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Fear of cancer recurrence in survivor and caregiver dyads:
differences by sexual orientation and how dyad members
influence each other
Ulrike Boehmer, Ph.D1, Yorghos Tripodis, Ph.D2, Angela R Bazzi, Ph.D1, Michael Winter,
MPH3, and Melissa A Clark, Ph.D4
1Department of Community Health Sciences, Boston University, Boston, MA
2Department of Biostatistics, Boston University, Boston, MA
3Data Coordinating Center, Boston University, Boston, MA
4Warren Alpert School of Medicine and School of Public Health, Brown University, Providence, RI
Abstract
Purpose—To identify explanatory factors of fear of recurrence (FOR) in breast cancer survivors
of different sexual orientations and their caregivers, and to assess the directionality in the survivor
and caregiver dyads’ FOR.
Methods—We recruited survivors of non-metastatic breast cancer of different sexual orientations
and invited their caregivers into this study. Using a telephone survey, we collected data from 167
survivor and caregiver dyads. Using simultaneous equation models and a stepwise selection
process, we identified the significant determinants of survivors and caregivers’ FOR and
determined the directionality of survivors and caregivers’ FOR. Weighting the model by the
inverse propensity score ensured that differences by sexual orientation in age and proportion of life
in the caregiver-survivor relationship were accounted for.
Results—Caregivers’ FOR predicted survivors’ FOR, and sexual orientation had a significant
effect on survivors’ FOR, in that sexual minority women reported less FOR than heterosexual
women. Other determinants of survivors’ FOR included their medical characteristics, co-residence
with caregivers, and caregivers’ social support and use of counseling. Caregivers’ FOR was related
to their social support and survivors’ medical characteristics.
Conclusions—This study suggests a need for caregiver interventions. Because survivors’ FOR
is affected by caregivers’ FOR caregiver interventions will likely benefit survivors’ FOR.
*Corresponding Author: Ulrike Boehmer, Ph.D., Department of Community Health Sciences, Boston University School of Public
Health, 801 Massachusetts Avenue, Crosstown Center, Boston, MA 02118, Phone 617-638-5835, Fax 617-638-4483,
boehmer@bu.edu.
Compliance with Ethical Standards:
Conflict of Interest: All authors declare that they have no conflict of interest.
Ethical approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of
the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable
ethical standards.
Informed consent: Informed consent was obtained from all individual participants included in the study.
HHS Public Access
Author manuscript
J Cancer Surviv
. Author manuscript; available in PMC 2017 October 01.
Published in final edited form as:
J Cancer Surviv
. 2016 October ; 10(5): 802–813. doi:10.1007/s11764-016-0526-7.
Author Manuscript Author Manuscript Author Manuscript Author Manuscript
Implications for Cancer Survivors—Both sexual minority and heterosexual breast cancer
survivors’ FOR are affected by their caregivers’ FOR, which suggests the caregivers of breast
cancer survivors are central for the survivors’ well-being and shall therefore be integrated into the
care process.
Keywords
Breast cancer; caregiving; dyads; fear of recurrence; psychological needs
Introduction
In the United States, approximately 14.5 million cancer survivors were alive in 2014 [1].
Due to advances in cancer screening and cancer treatments, it is expected that this number
will increase to 19 million cancer survivors by 2024 [1]. Forty-one percent of female cancer
survivors report a history of breast cancer [1]. With increased survival rates, the field of
cancer survivorship aims to understand the concerns and needs of cancer survivors over the
long term. One of the psychosocial problems most commonly reported by breast cancer
survivors is fear of recurrence (FOR) [2, 3], which is defined as worry and concern about
recurrence of cancer. Prevalence estimates of breast cancer survivors’ FOR vary from 25%
to 97% [3, 4], due to the different measures of FOR used in studies. Despite the absence of a
defined clinically relevant level of FOR, consensus exists that FOR is the most common
unmet need for breast cancer survivors in part due to consistent evidence linking FOR to
anxiety, depression, and decreased quality of life [3] and follow-up care [5].
Based on several review studies summarizing decades of research on FOR [3, 6, 7],
demographic and cancer characteristics as well as other medical factors have been identified
as determinants of FOR [3, 7]. Among the demographic factors, younger age has
consistently been associated with greater FOR [3, 7], while the evidence for other
demographic factors has been more mixed. Some, yet not all, studies have found lower
education to be associated with greater FOR [3, 7]. Furthermore, the association between
race or ethnicity, marital status, income or employment and FOR was inconsistent [3, 7]. In
these reviews, no mention was made of sexual orientation and its relationship to FOR. With
respect to the cancer-related variables, time since diagnosis was generally unrelated to FOR,
and the evidence for a relationship between cancer stage and cancer treatments was mostly
inconsistent, with some evidence pointing to a relationship between comorbid disease and
FOR [3, 7].
Studies also indicate that FOR is not limited to survivors, leading to the evaluation of FOR
among survivors’ partners, spouses, and family members [3, 8]. In one review, five of nine
studies indicated that caregivers’ FOR was greater than that of survivors [3]. Generally there
was consensus that survivors and their partner or family member were interdependent in
terms of FOR, in that FOR experienced by one influenced the FOR by the other [9].
However, studies to date were limited in several ways. First, heterosexuality was assumed in
that studies focused on breast cancer survivors and their husbands and family members. Yet
breast cancer also occurs in the underserved population of women who report being lesbian,
bisexual, or have a preference for a female partner, which we refer to as sexual minority
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women (SMW) [10]. Omitting SMW from this body of research is a significant oversight
due the growing body of evidence of SMW’s greater risk factors for breast cancer [11–25]
and some evidence suggesting SMW have higher incidence [26], and greater breast cancer
mortality [27] compared to heterosexual women (HSW). To date, a number of studies
examining SMW breast cancer survivors have concluded that quality of life and levels of
anxiety, depression, and mood disturbance are similar to those among HSW with breast
cancer [28].
With the exception of one prior study, studies of the caregivers to SMW breast cancer
survivors have been lacking [29]. The only caregiver study indicated that caregivers reported
significantly less support compared to the SMW breast cancer survivors, while SMW
survivors and caregivers’ distress was similar [29]. FOR was not considered in this study and
no comparison sample of heterosexual women (HSW) and their caregivers was available. To
address this gap in research on FOR among SMW and their caregivers, we conducted a
study that recruited SMW and HSW with breast cancer. Each participating woman with
breast cancer was asked to put us in contact with her partner or spouse if partnered, while
survivors without a partner were asked to identify the most important support person to
them, as we explained in more detail elsewhere [30]. Having survey data from survivors of
different sexual orientations and their participating caregivers allows for a detailed
examination of the explanatory factors of survivors and their caregivers’ FOR. Moreover, the
current study acknowledges the interdependence between survivors (actors) and their
caregivers’ (partners) FOR. Using an analytic approach common in econometrics [31], yet
entirely novel in this context, this study aims to identify directionality of the
interdependence, or whether the actor-partner’s FOR is mutual, and whether the actor’s FOR
impacts the partner’s FOR or vice versa.
Methods
All aspects of this study were approved by the Institutional Review Board of Boston
University.
Recruitment
Because this study sought to learn about heterosexual women (HSW) and sexual minority
women (SMW) with breast cancer and their caregivers, the recruitment focused on SMW
and HSW with breast cancer first. To obtain a sample of SMW and HSW with breast cancer,
we initially re-contacted participants from an earlier comparative study of 257 HSW and 181
SMW, who were recruited from a cancer registry [32]. Additionally, we used community-
based recruitment, by inviting SMW and HSW who were ineligible for a study of advanced
breast cancer for which we recruited concurrently. For this non-probability recruitment, we
used the Love/AVON Army of Women (AOW) – an online recruitment resource designed to
partner a diverse group of women with the research community in an effort to accelerate
breast cancer research. Eligibility criteria for women with breast cancer were a diagnosis of
non-metastatic (stage in situ to III) and non-recurrent breast cancer after age 21. Eligible
SMW and HSW were invited to participate in a 45-minute telephone survey. At the end of
the survey, each participant was given the opportunity to invite her partner, if partnered, or
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her primary support person, if unpartnered, to participate in a similarly structured phone
survey. Any individual who was identified as the partner or the primary support for a woman
with breast cancer was invited to participate in a telephone survey of approximately the same
length and asked the same or similar questions as we asked the breast cancer survivors.
From May to July 2012, we recruited 297 breast cancer survivors of whom 203 (68.4%)
provided contact information for their caregiver, while 82 (27.6%) refused to provide contact
information, and 12 (4.0%) indicated they did not have a caregiver. When we contacted the
203 caregivers for whom we had contact information, 167 (82.3%) participated in the
survey, 25 (12.3%) exceeded the number of contact attempts to complete the survey, 7
(3.4%) responded, yet were unable to participate before the end of the study period, and 4
(2.0%) refused participation. For this study, we relied on the 167 breast cancer survivors and
their caregivers for whom we had complete data.
Measures
The outcome, FOR, was measured by the self-report measure developed by Northouse in
1981 [6]. This 22-item instrument is available for survivors and family caregivers [33]. This
scale uses negatively and positively worded items to determine the amount of worry and
concern survivors and their caregivers have about the cancer recurring. Higher scores
indicate greater FOR. The Cronbach alpha for the FOR scale in our sample of survivors and
caregivers was 0.94 and 0.93, respectively.
The main independent measure, sexual orientation, distinguished heterosexual survivors and
caregivers from sexual minority survivors and caregivers. Sexual minorities were comprised
of lesbian, gay, bisexual individuals, and individuals reporting a preference for same-sex
partners. Demographic, cancer-related, and medical factors were considered as independent
variables, consistent with the literature on fear of recurrence [3, 7]. Because of our focus on
sexual orientation, we also considered discrimination experiences and the social support
resources of survivors and caregivers, which were relevant factors explaining the experiences
of sexual minority survivors in prior studies [29, 32, 34].
Demographic data consisted of age, race, education, employment, and income for all
participants. For survivors, we assessed marital status, having a partner, living alone, and
health insurance. From survivors’ addresses we derived two measures of neighborhood
socioeconomic status. Using Census 2000 data, we obtained: (1) Poverty level, the
percentage of the population in a census block living under the Federal poverty level and (2)
the census block’s median household income. In the context of the demographic data, we
asked survivors and caregivers if they ever felt discriminated against because of their age,
race/ethnicity, gender, sexual orientation, appearance, income level, or having had cancer,
allowing for yes or no answers. Each affirmative discrimination experience was then counted
[35, 36].
Medical information included survivors’ cancer-related experiences such as time since
diagnosis (calculated from the diagnosis to the survey date), stage, and cancer treatments,
from which we derived measures of surgery, radiation, chemotherapy, and receipt of anti-
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estrogen (tamoxifen or aromatase inhibitor) therapy. For both survivor and caregiver
participants, we determined comorbidities using a measure developed by Ganz [37].
We measured multiple aspects of social support. We used a six-item short form of the
Interpersonal Support Evaluation List (ISEL) (Cronbach alpha=0.72) [38–40]. To determine
in more detail the sources of social support, we also used a 12-item social support
instrument (MPSS) (Cronbach alpha=0.90), which assesses support from three sources,
family, friends, and a significant other [41]. Using single items, we inquired about survivors’
and caregivers’ use of cancer support groups and assessed mental health counseling prior to
and after the breast cancer diagnosis. As dyadic characteristics, we assessed survivor and
caregiver’s co-residence, the type of survivor-caregiver relationship, and the duration of the
relationship from which we determined the proportion of life they were in this relationship.
Another dyadic characteristic was a five item scale that measures dyadic cohesion (Cronbach
alpha=0.76), which was derived from the dyadic assessment scale [42]. Finally, from a
single item adapted from a study on couples [43], we determined breast cancer’ effect on
closeness of the relationship.
Statistical Analysis
Survivors and caregivers’ demographic, clinical, and dyadic characteristics were compared,
using t-tests and chi-square tests, to examine differences by survivors’ sexual orientation. To
account for potential selection biases and confounding that may influence the outcomes,
survivors’ and their caregivers’ FOR, we used propensity scores. Of the significant factors
related to sexual orientation in our sample, we used caregiver age and proportion of life in
relationship with the survivor in the propensity score model, since both are unmodifiable
risk factors and highly unbalanced in our sample. Propensity scores weighted all estimators
by their inverse-probability and were generated using a multivariable logistic regression
model for the dichotomous outcome (SMW vs HSW). To identify independent factors
associated with each actor’s FOR, we used a stepwise selection process in regressions,
always including survivors’ sexual orientation. P-values less than 0.1 were considered
significant enough to be included in the simultaneous equation model. For this step, all
variables in Table 1 were considered, with the exception of caregiver gender and sexual
orientation because there was complete overlap between these variables and the main
independent variable of interest, survivor sexual orientation. Since each actor’s FOR were
both outcomes and predictors for the other actor’s FOR, we had “endogeneity” [44] causing
the following two problems: 1. a linear regression model that had FOR of the other actor as a
determinant would give invalid inference due to the significant correlation between the
determinant and the error term, and 2. their coefficients would be biased. To address the
inference and bias problems caused by endogeneity, we used simultaneous equation models
(SIM), which are widely used in econometrics, stem from economic theory and have a
causal interpretation. All analyses were performed in SAS 9.4
Results
Table 1 presents survivors’ characteristics by sexual orientation and the caregivers’
characteristics by the sexual orientation of the survivor. We first tested for differences
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between HSW and SMW. SMW were on average younger, 56 years, compared to HSW who
were on average 61 years old. There were no differences with respect to race, in that about
90% of all survivors reported white race. Survivors’ marital status differed, with 41% of
SMW reporting never having been married compared to 7% of HSW. About 85% of SMW
and HSW had a partner and less than 20% of survivors reported living alone. There were no
differences in socioeconomic status, in that survivors were highly educated, about half
reported having completed graduate school, more than 40% had an income of $70,000 or
more, more than 40% resided in low poverty-level neighborhoods, and about 25% lived in
neighborhoods with a low median household income ($43,846 or lower). Compared to
HSW, SMW reported twice the amount of discrimination experiences. Survivors were
similar with respect to their clinical characteristics, with about 60% reporting in situ or stage
I breast cancer. More than 80% were treated with breast conserving surgery, more than 60%
received radiation therapy, and about 70% received anti-estrogen therapy. The average years
since diagnosis was seven for SMW compared to six for HSW. Both survivor groups shared
similar levels of comorbidities, 2.5 on average, with almost half of survivors reporting three
or more comorbidities. Survivors’ overall social support scores were similar but SMW
reported receiving significantly more support from friends than reported by HSW. Compared
to HSW, SMW reported significantly greater use of cancer support groups and greater use of
counseling prior to their breast cancer, yet survivors’ use of counseling after the breast
cancer diagnosis was similar.
The caregivers significantly differed by gender and sexual orientation, in that 84% of HSW
caregivers were male and all self-reported as heterosexual, while 94% of caregivers to SMW
were female and 86% self-reported as sexual minority. Caregivers to SMW were
significantly younger, on average 56 years old, compared to HSW’ caregivers, who were on
average 62 years old. Both groups of caregivers reported mostly white race, similar income
levels, and high educational attainment (more than 75% reported a college or graduate
degree). Caregivers to SMW were significantly more likely employed (73% vs. 48%) and
reported three times the discrimination reported by HSW’ caregivers. Both groups of
caregivers reported less than three medical comorbidities on average. Caregivers’ social
support was similar overall, yet SMW’ caregivers reported significantly more support from
significant others and from friends than HSW caregivers. Caregivers to SMW were
significantly more likely to report having used counseling prior to the survivors’ cancer,
while the use of support groups and counseling to deal with the survivors’ cancer was
similar by caregiver group.
When comparing survivor-caregiver’s dyadic characteristics, both survivor groups’ were
85% spouse or partner caregivers, yet caregivers to HSW were significantly more likely to
be family members while caregivers to SMW were more likely to be friends. The duration of
the survivor-caregiver relationship was significantly longer for HSW than for SMW (31.6 vs.
18.6 years). Dyads of SMW and their caregivers were similar to HSW caregiver dyads in
cohesion and closeness. Finally, when assessing the outcomes, survivors’ FOR did not differ
by sexual orientation, and both caregiver groups reported similar FOR. As expected, there
was a significant correlation between caregiver FOR and survivor FOR (rho=0.29, p-value<.
0001).
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Figure 1 provides a path diagram of the determinants we included in the SIM. Rectangles
denote independent variables, ellipses denote dependent variables. Determinants associated
with the survivors’ FOR (p<.10) consisted of years since diagnosis, co-residence with the
caregiver, caregivers’ counseling, survivors’ social support (ISEL), chemotherapy treatment,
and survivors’ sexual orientation. In addition, we considered caregivers’ FOR as a
determinant of survivors’ FOR. The determinants associated with the caregivers’ FOR (p<.
10) were years since diagnosis, caregivers’ discrimination, caregivers’ social support
(MPSS), and survivors’ anti-estrogen therapy, comorbidities, and sexual orientation. As
before, we added the survivors’ FOR as a determinant of the caregivers’ FOR.
Table 2 presents the results of the two-staged SIM analyses, showing the regression
coefficients and their t-statistics, all adjusted using propensity scores to account for the
differences in age and proportion of life in the relationship with the survivor. Columns 3 and
4 of Table 2 show the direct effects for each outcome. The direct effects for each outcome
account for all independent factors found significant in the model selection step along with
the effect of the other actor’s FOR. These results indicate that actor-partner FOR is
unidirectional, in that caregivers’ FOR significantly impacts survivors’ FOR but not the
other way around. Covariates that were significant and included in the SIM for caregiver
FOR were anti-estrogen therapy, years since diagnosis, caregiver discrimination score,
survivors’ comorbidities, caregivers’ total social support scores (MPSS). Covariates that
were significant and included in the SIM for survivors’ FOR were years since diagnosis,
chemotherapy, whether caregivers sought mental health counseling to deal with diagnosis,
co-residence, and survivors’ ISEL.
The total effects of each predictor on the outcome of interest, FOR, while accounting for age
and proportion of life in relationships with survivors, are shown in columns 5 and 6 of Table
2. This total effects model accounts for both direct effects on FOR as well as indirect effects.
Indirect effects result from the causality loop, in that beyond the direct effects of caregiver
FOR on survivor FOR, all determinants for caregiver FOR affect survivor FOR. Sexual
orientation had a significant effect on survivor FOR, with SMW having a small but
statistically significantly lower FOR than HSW. There was a similar effect of sexual
orientation on caregiver FOR, but it was not statistically significant. Caregiver FOR also had
a positive relationship with survivor FOR, with higher caregiver FOR resulting in higher
survivor FOR. The opposite relationship between actors (survivors and caregivers) was also
positive but not statistically significant. Significant factors that increased survivors’ FOR
included receipt of anti-estrogen therapy, caregivers who sought mental health counseling to
deal with diagnosis, co-residence, survivors’ comorbidities, and receipt of chemotherapy.
Significant factors that were negatively correlated with survivor FOR included years since
diagnosis, survivors’ social support (ISEL), and caregivers’ social support (MPSS).
Significant factors that increased caregiver FOR included receipt of anti-estrogen therapy
and survivors’ comorbidities. Significant factors that were negatively correlated with
caregivers’ FOR included years since diagnosis and caregivers’ social support (MPSS).
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Discussion
In many ways this study is consistent with existing knowledge about FOR, indicating that
even five or more years after diagnosis, FOR is a persistent concern [45]. As indicated by
previous studies, social support, medical comorbidities, time since diagnosis and cancer
treatments related to FOR [3, 7, 45]. While prior studies linked demographic factors to FOR
[3, 7], the contribution of this study are the links between the survivors’ sexual orientation
and the survivors’ and caregivers’ FOR. Moreover, the significant correlation between
survivors’ and caregivers’ FOR that we identified confirms survivor-caregiver
interdependence [3, 8, 9]. While there is consensus that FOR experienced by one dyad
member influences the FOR of the other [9], this study’s novelty and unique contribution is
to reveal greater details about the dynamics within caregiver-survivor dyads that have
implications for interventions for survivors and caregivers related to FOR.
This study illuminates a more complex picture, mostly suggesting paths by which caregivers
increase survivors’ FOR. First, this study determined that survivor-caregiver co-residence
increased survivors’ FOR but was unrelated to caregivers’ FOR. We suggest that living
together may allow survivors to closely observe their caregivers’ reactions, coping, and
mood, which may then increase survivors’ FOR. Second, caregivers who sought counseling
to deal with the cancer diagnosis increased survivors’, but was unrelated to caregivers’ FOR.
On the other hand, caregivers with more social support decreased survivors’ FOR. These
findings may suggest that survivors perceive their caregivers’ help-seeking behavior as a
weakness or as an inability to cope, whereas caregivers who have social support, possibly
through sources other than a therapist decreased survivors’ FOR. These dynamics suggest
needs for further studies into survivor-caregiver communication and possible later
opportunities for communication and cognitive behavioral stress management interventions
for these dyads [46–49]. For example, our findings of survivors being reactive to caregivers
may make it necessary to develop cognitive behavioral interventions focused on reassuring
survivors about their caregivers’ ability to cope or changing survivors’ cognitions to perceive
their caregivers’ help seeking behaviors as strengths and appropriate self-care.
Most importantly, these findings go beyond interdependence of survivor-caregiver FOR to
demonstrate how the dynamics were unidirectional, in that caregivers’ FOR directly affected
survivors’ FOR, while survivors’ FOR did not affect caregivers’ FOR. Our interpretation of
these findings is that they reveal a common feature of survivors being highly reactive to their
caregivers. The unidirectional dynamic of caregivers’ FOR directly affecting survivors’ FOR
and caregivers’ social support reducing survivors’ and caregivers’ FOR provide
opportunities for caregiver interventions that may improve both dyad members’ FOR. While
specific medical and cancer characteristics affected both dyad members, they are not
modifiable and therefore unsuitable for interventions. In contrast, social support and
discrimination experiences are mutable factors suitable for interventions to reduce FOR. The
importance of social support as a mechanism suitable for interventions to reduce caregivers
and survivors’ FOR has already been suggested by others [50].
With respect to sexual orientation and FOR, we found that SMW and HSW had similar FOR
as did the caregivers of SMW and HSW. However, in the final fully adjusted models, we
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found that SMW who had similar characteristics as HSW had slightly less FOR compared to
HSW. Additionally, caregivers of SMW, who had similar characteristics as the caregivers of
HSW, had somewhat lower FOR compared to caregivers of HSW. These differences in FOR
by sexual orientation are an indication that our study did not fully account for all differences
between dyads of HSW and their caregivers and the dyads of SMW and their caregivers.
Future studies are needed to identify and explain these differences in FOR by sexual
orientation. We suggest unmeasured factors which might account for SMW somewhat lower
FOR are SMW’ protective factors such as being connected to the LGBT community [51]
and having developed resilience through other life circumstances such as experiences with
discrimination [52]. We found that compared to HSW survivors, SMW survivors reported
more discrimination, consistent with our prior studies [32, 53]. While we linked caregivers’
discrimination experiences to caregivers and survivors’ FOR initially, in our final models the
effect of discrimination experiences diminished when other factors were accounted for.
However, we used only a cursory assessment of discrimination experiences. Future studies
will need to assess in greater detail the specifics of SMW survivors and their caregivers’
experiences of discrimination, including whether any of these experiences are linked to their
treating providers, nurses, or administrators. Given our approach of restricting the caregiver
choice for partnered survivors to the partner or spouse, caregivers to HSW were more likely
men compared to the mostly female caregivers to SMW. Also, this study focused on the
dyad, therefore an inclusion criterion of this study was to have a participating caregiver,
implying that we only included partnered survivors who had a participating spouse or
partner. As we explained elsewhere [30], this criterion was easier met by partnered SMW
survivors than by partnered HSW survivors, in that fewer male partners agreed to participate.
SMW’ caregivers, the majority of whom self-reported a sexual minority identity themselves,
were more likely employed, and shared with the SMW survivor greater experiences of
discrimination and use of counseling before the cancer diagnosis compared HSW and their
caregivers. Similar to survivors, we found that caregivers to SMW were more likely to report
discrimination experiences compared to caregivers of HSW. This confirms a recent review of
sexual minority patients’ caregivers, which pointed to discrimination within health and
social services systems [54].
This study has limitations worth noting. For example, caregiver gender and sexual
orientation could not be considered in this study. If future studies allow survivors to identify
any person as their caregiver, irrespective of the relationship to the caregiver, it will be
possible to better understand gender effects, assuming some HSW survivors will identify
female caregivers rather than a male partner or spouse. This may provide additional insights
with respect to the effects of caregiver gender and caregiver role (partner versus other). Our
sample lacked diversity in terms of race and ethnicity preventing us from examining the
intersectionality of race and sexual orientation.
Despite these limitations, this study’s ability to reveal dynamics in caregiver and survivor
dyads is a major strength and innovation. Other strengths include consideration of the sexual
orientation of breast cancer survivors, involving caregivers who were and were not partners,
and our novel analytic approach that allowed us to identify a causal relationship in that
caregivers’ FOR affected survivors’ FOR, while survivors’ FOR did not affect caregivers’
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FOR. Therefore, findings of this study point to the importance of caregiver interventions to
reduce FOR in survivors and their caregivers and thereby enhance their well-being.
Acknowledgments
Funding: This study was funded by the American Cancer Society (RSGT-06-135-01-CPPB).
Support for this research was provided by the American Cancer Society, Grant No. RSGT-06-135-01-CPPB PI: U.
Boehmer. Additional supplemental funding was made available by a Boston University School of Public Health
pilot grant and by funding from NCI 3R01CA181392-02S1. The authors are grateful to the participants who took
the time to respond to our questions and complete the survey.
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Figure 1.
Path diagram of SIM model.
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Table 1
Characteristics of the Sample
Characteristic Heterosexual Survivor
N=43 Sexual Minority Survivor
N=124 p-value Caregiver to Heterosexual Survivor
N=43
Caregiver to Sexual Minority
Survivor
N=124 p-value
Demographics
Gender: Female 43 124 7 (16.3) 116 (93.5) <.0001
vs. Male 0 0 36 (83.7) 8 (6.5)
Sexual Orientation <.0001
Heterosexual 43 0 43 ( 100) 18 (14.5)
Sexual Minority 0 124 0 106 (85.5)
Age at survey 60.8 (8.4) 56.3 (8.6) 0.0037 62.4 (8.0) 55.8 (9.3) <.0001
Mean (SD)
Race: White 38 (88.4) 114 (91.9) 0.5379 42 (97.7) 111 (89.5) 0.0962
vs. Other 5 (11.6) 10 ( 8.1) 1 ( 2.3) 13 (10.5)
Marital Status <.0001
Never Married 3 ( 7.0) 50 (40.7)
Married 35 (81.4) 55 (44.7)
Sep/Div/Widowed 5 (11.6) 18 (14.6)
Missing
0 1
Having a partner/spouse 0.7801
No 7 (16.3) 18 (14.5)
Yes 36 (83.7) 106 (85.5)
Lives alone 0.4266
No 37 (86.0) 100 (80.6)
Yes 6 (14.0) 24 (19.4)
Education 0.5187 0.1506
High School or less/Techn Training 3 ( 7.0) 3 ( 2.4) 3 ( 7.0) 3 ( 2.4)
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Characteristic Heterosexual Survivor
N=43 Sexual Minority Survivor
N=124 p-value Caregiver to Heterosexual Survivor
N=43
Caregiver to Sexual Minority
Survivor
N=124 p-value
Some College 4 ( 9.3) 9 ( 7.3) 6 (14.0) 14 (11.3)
Graduated College 16 (37.2) 49 (39.5) 15 (34.9) 31 (25.0)
Completed Grad School 20 (46.5) 63 (50.8) 19 (44.2) 76 (61.3)
Currently employed 0.1307 0.0024
Yes 24 (55.8) 85 (68.5) 20 (47.6) 90 (73.2)
No 19 (44.2) 39 (31.5) 22 (52.4) 33 (26.8)
Missing
1 1
Health insurance 1
Yes 43 ( 100) 122 (98.4)
No 0 2 ( 1.6)
Individual income 0.8781 0.4057
Less than $30K 8 (20.0) 27 (22.3) 5 (12.5) 27 (22.1)
$30K – <$70K 14 (35.0) 45 (37.2) 18 (45.0) 47 (38.5)
$70K or more 18 (45.0) 49 (40.5) 17 (42.5) 48 (39.3)
Missing
3 3 3 2
Census poverty level 0.7826 -- --
<5% 19 (44.2) 58 (46.8)
5% – <10% 12 (27.9) 36 (29.0)
10% – <20% 10 (23.3) 21 (16.9)
20%+ 2 ( 4.7) 9 ( 7.3)
Census median household income 0.2278 -- --
Low $43,846 or less 12 (27.9) 31 (25.0)
Mid $43,847 – $74,313 20 (46.5) 74 (59.7)
High > $74,313 11 (25.6) 19 (15.3)
Discrimination 0.8 (1.1) 1.5 (1.6) 0.0023 0.5 (0.8) 1.5 (1.5) <.0001
Mean (SD)
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Characteristic Heterosexual Survivor
N=43 Sexual Minority Survivor
N=124 p-value Caregiver to Heterosexual Survivor
N=43
Caregiver to Sexual Minority
Survivor
N=124 p-value
Clinical
Years since diagnosis 5.8 (3.9) 7.3 (3.6) 0.0314 NA NA
Mean (SD)
Stage of cancer at time of diagnosis 0.9269 NA NA
In situ (ductal carcinoma) 8 (19.0) 26 (21.0)
Stage I 18 (42.9) 46 (37.1)
Stage II 12 (28.6) 40 (32.3)
Stage III 4 ( 9.5) 12 ( 9.7)
Missing
1 0
Surgical Treatment 0.1404 NA NA
Lumpectomy 41 (95.3) 105 (84.7)
Mastectomy Only 0 ( 0.0) 10 ( 8.1)
Mastectomy and Reconstruction 2 ( 4.7) 9 ( 7.3)
Radiation 0.2338 NA NA
No 11 (25.6) 44 (35.5)
Yes 32 (74.4) 80 (64.5)
Anti-estrogen Treatment 0.8883 NA NA
No 12 (27.9) 36 (29.0)
Yes 31 (72.1) 88 (71.0)
Comorbidities 0.9519 0.2659
Mean (SD) 2.5 (1.6) 2.5 (1.7) 2.5 (1.7) 2.2 (1.5)
Number of Comorbidities 0.3199 0.3433
0 3 ( 7.1) 13 (10.7) 5 (11.6) 15 (12.4)
1 11 (26.2) 18 (14.8) 8 (18.6) 31 (25.6)
2 8 (19.0) 33 (27.0) 7 (16.3) 29 (24.0)
3+ 20 (47.6) 58 (47.5) 23 (53.5) 46 (38.0)
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Characteristic Heterosexual Survivor
N=43 Sexual Minority Survivor
N=124 p-value Caregiver to Heterosexual Survivor
N=43
Caregiver to Sexual Minority
Survivor
N=124 p-value
Social support
ISEL-SF Mean (SD) 22.3 (2.0) 22.5 (2.3) 0.7815 21.7 (2.6) 22.5 (1.9) 0.0743
Multidimensional Perceived Social
Support Scale: Total Score 6.0 (0.5) 6.0 (0.8) 0.5568 5.8 (0.8) 6.0 (0.6) 0.2529
Multidimensional Perceived Social
Support Scale: Significant Other
Subscale
6.2 (0.5) 6.3 (0.9) 0.0924 6.0 (0.9) 6.3 (0.6) 0.0256
Multidimensional Perceived Social
Support Scale: Family Subscale 6.0 (5.5, 6.0) 6.0 (5.0, 6.8) 0.103 5.8 (0.9) 5.6 (1.2) 0.1389
Multidimensional Perceived Social
Support Scale: Friends Subscale 6.1 (0.5) 6.3 (0.8) 0.0256 5.9 (0.9) 6.2 (0.6) 0.0132
Ever cancer support group? 0.0154 0.2715
No 30 (69.8) 60 (48.4) 39 (90.7) 104 (83.9)
Yes 13 (30.2) 64 (51.6) 4 ( 9.3) 20 (16.1)
Counseling to deal with breast
cancer? 0.069 0.0533
No 32 (74.4) 73 (58.9) 41 (95.3) 103 (83.7)
Yes 11 (25.6) 51 (41.1) 2 ( 4.7) 20 (16.3)
Counseling before breast cancer? 0.0008 0.0002
No 24 (55.8) 34 (27.4) 30 (69.8) 45 (36.6)
Yes 19 (44.2) 90 (72.6) 13 (30.2) 78 (63.4)
Dyadic
Relationship to Survivor 0.0233
Spouse/Partner 36 (83.7) 106 (85.5)
Child 3 (7.0) 0
Sibling 2 (4.7) 3 (2.4)
Parent 1 (2.3) 3 (2.4)
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Characteristic Heterosexual Survivor
N=43 Sexual Minority Survivor
N=124 p-value Caregiver to Heterosexual Survivor
N=43
Caregiver to Sexual Minority
Survivor
N=124 p-value
Friend 1 (2.3) 12 (9.7)
Spouse /partner 36 (83.7) 106 (85.5) 0.7801
vs. other Caregiver 7 18
Survivor –Caregiver Co residence 36 (83.7) 97 (78.2) 0.4406
Years of Rel with Survivor <0.0001
Mean (SD) 31.6 (13.1) 18.6 (12.0)
Proportion of life been in
relationship with Survivor Mean
(SD)
<0.0001
0.5 (0.2) 0.3 (0.2)
Dyadic cohesion Mean (SD) 17.5 (2.6) 18.1 (3.0) 0.284 17.5 (2.9) 18.2 (2.5) 0.1036
Breast cancer 0.3812 0.7525
Brought you closer, 29 (69.0) 88 (72.7) 33 (76.7) 94 (77.7)
Distanced you from her, 1 (2.4) 8 (6.6) 2 (4.7) 3 (2.5)
Had no effect on your relationship 12 (28.6) 25 (20.7) 8 (18.6) 24 (19.8)
Outcome variable
Fear of Recurrence Scale 0.2316
Mean (SD) 73.9 (15.4) 70.9 (16.4) 0.2955 75.2 (13.6) 71.8 (16.5)
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Table 2
Explanatory factors of FOR in survivor and caregiver dyads of different sexual orientations
Direct Effects Total Effects
Survivor FOR Caregiver FOR Survivor FOR Caregiver FOR
Sexual Orientation (SM vs HS)
Estimate −0.13 −0.15 −0.21 −0.16
Std Err 0.08 0.09 0.07 0.08
t-value −1.76 −1.68 −2.95 −1.96
p-value 0.0779 0.0924 0.0032 0.0503
Years Since Diagnosis
Estimate −0.17 −0.24 −0.30 −0.25
Std Err 0.08 0.09 0.07 0.08
t-value −2.08 −2.76 −4.27 −3.32
p-value 0.0374 0.0058 <.0001 0.0009
Anti-estrogen therapy (Yes vs No)
Estimate 0.22 0.11 0.22
Std Err 0.07 0.04 0.07
t-value 3.10 2.52 3.30
p-value 0.0019 0.0117 0.0010
Survivor Comorbidities
Estimate 0.24 0.12 0.25
Std Err 0.07 0.05 0.07
t-value 3.21 2.60 3.48
p-value 0.0013 0.0092 0.0005
Chemotherapy (Yes vs No)
Estimate 0.16 0.16 0.01
Std Err 0.06 0.07 0.03
t-value 2.46 2.50 0.37
p-value 0.0138 0.0123 0.7117
Caregiver Sought Mental Health counseling to deal with diagnosis (Yes vs No)
Estimate 0.31 0.32 0.02
Std Err 0.07 0.06 0.05
t-value 4.76 4.98 0.37
p-value <.0001 <.0001 0.7102
CORESIDENCE (Yes vs No) Estimate 0.22 0.23 0.01
Std Err 0.07 0.07 0.04
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Direct Effects Total Effects
Survivor FOR Caregiver FOR Survivor FOR Caregiver FOR
t-value 3.35 3.44 0.37
p-value 0.0008 0.0006 0.7108
Caregiver Discrimination Score
Estimate 0.14 0.07 0.15
Std Err 0.07 0.04 0.08
t-value 1.90 1.74 1.93
p-value 0.0575 0.0827 0.0541
Survivor ISEL
Estimate −0.19 −0.19 −0.01
Std Err 0.06 0.07 0.03
t-value −2.90 −2.94 −0.37
p-value 0.0038 0.0032 0.7110
Caregiver MPSS TOTAL
Estimate −0.23 −0.12 −0.24
Std Err 0.07 0.05 0.07
t-value −3.34 −2.57 −3.41
p-value 0.0008 0.0102 0.0006
Caregiver FOR
Estimate 0.49 0.51 0.03
Std Err 0.15 0.16 0.08
t-value 3.37 3.15 0.36
p-value 0.0008 0.0017 0.7180
Survivor FOR
Estimate 0.06 0.03 0.06
Std Err 0.15 0.08 0.16
t-value 0.38 0.36 0.36
p-value 0.7074 0.7180 0.7154
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