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Research Article

Depression among underserved rural and urban caregivers of Latinas with breast cancer

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ABSTRACT

Among Latino/as, informal caregiving duties are often deemed a family responsibility. Understanding psychological outcomes tied to caregivers of Latina breast cancer survivors is important to identify the impacts of cancer. Secondary analysis of baseline data collected in a randomized clinical trial (RCT) from 230 Latina breast cancer survivor–caregiver dyads. Characteristics of caregivers residing in rural/underserved and urban areas were compared using t- or chi-square tests. General linear models were used to analyze depressive symptoms in relation to residence, survivor–caregiver relationship, acculturation, obligation, reciprocity, and comorbidities. Urban residence was significantly associated with higher levels of depression controlling for survivor–caregiver relationship acculturation, obligation, reciprocity, and comorbidities. Mother caregivers had significantly higher levels of depression than other caregivers. Depression among Latino/a caregiver’s providing care to an adult child is an important consideration as Latino/as are less likely to seek out/have access to mental health services than other groups.

Background

Latina breast cancer and caregivers

Breast cancer incidence rates are estimated to be the highest for Hispanic female cancers (American Cancer Society, Citation2020). Latinas are more likely to be diagnosed with a more advanced disease state, have more aggressive disease types than non-Hispanic White females (Martinez et al., Citation2017), poorer physical health, and increased psychological distress (Badger et al., Citation2020; T. Badger et al., Citation2017). The negative consequences of breast cancer in Latinas may also increase the care burden for the informal caregiver.

As breast cancer incidence among Hispanic females has increased, so too has the number of informal caregivers (AARP & National Alliance for Caregiving, Citation2020), defined as family members providing unpaid care for a family or friend with a health condition, disabled, and/or elderly (Hopkins). In a nationwide caregiver survey, 7% of caregivers reported cancer as the primary health condition of those for whom they were providing care. Among those surveyed, the Hispanic population represented the second largest race/ethnicity (17%; AARP & National Alliance for Caregiving, Citation2020). Caregivers often face varying adverse consequences for their own health and well-being, such as a decline in overall systemic health, physical strain, financial stress, and emotional stress (AARP & National Alliance for Caregiving, Citation2020). In a national survey, 23% of all caregivers reported a personal perception that caregiving had caused a detriment to their own health, and 17% reported caregiving as a high physical strain (AARP & National Alliance for Caregiving, Citation2020). It is also estimated that the percentage of caregivers with depression (20%) is double that seen among non-caregivers (Family Caregiver Alliance, Citation2002). Higher numbers of co-morbidities among cancer caregivers are linked to poorer physical health (Paek et al., Citation2018). Co-morbidities also have an impact on depression, as the odds of having depression increase with the number of comorbidities (Read et al., Citation2017).

Rural and medically underserved areas through the social determinants of health lens

Although “rural” is defined by the U.S. census as 50,000 or less, there are populations larger than this that share similar social determinants of health (SDH) (U.S. Census). Social determinants of health include the interrelated concepts “(a) economic stability, (b) education, (c) neighborhood and built environment, (d) health and health care, and (e) social and community context (Asare et al., Citation2017).” Rural areas have less economic stability (lower household income), lower educational attainment, barriers due to the neighborhood and built environment (transportation issues), and less access to health and health care (Centers for Disease Control and Prevention., Citation2019). Larger communities that mimic these same SDH of rural locations should also be considered as underserved. Communities with high percentages of Hispanic populations in Arizona such as Yuma with a population of 104,000 can be characterized as an underserved area, sharing similar SDH as those experienced in rural areas. This city, which is over 100 square miles, requires those with medical conditions to drive far distances to access medical care. Access to transportation may also be an issue. Yuma also has a lower household income than the Arizona state national average (City of Yuma, Citation2020).

Findings for mental health by type of residence, such as depression by urban versus rural residence, have been mixed (Van der Kruk et al., Citation2022). At the national level, the Substance Abuse Mental Health Services Administration has reported that depression as a mood disorder is more prevalent among those living in urban areas than rural (Substance Abuse and Mental Health Service Administration, Citation2016). The Health Information National Trends Survey indicates higher depression among those living in rural areas in an unadjusted analysis (Probst et al., Citation2006). Mental health and other health outcomes are affected by more than rural/urban location and should be considered in the lens of SDH and medically underserved.

Caregivers and SDH

The majority of caregivers in the U.S. live in urban areas; 12% overall with 3% of Hispanic caregivers living in rural locations (AARP & National Alliance for Caregiving, Citation2020). In Arizona, the percentage of Hispanic caregivers living in rural locations is higher, as the population of Hispanic is over 50% in two of Arizona’s counties (United States Census Bureau, Citation2019a; United States Census Bureau., Citation2019b). Caregivers in underserved areas echo the same caregiver concerns and face difficulties similar to those in rural locations (Gorawara-Bhat et al., Citation2019). Caregivers living in rural areas have lower levels of educational attainment and more economic instability (Bouldain et al., Citation2018; Crouch et al., Citation2017). Both are exacerbated among female caregivers. In addition, rural caregivers in comparison to urban caregivers have less access to services such as public transportation (neighborhood and built environment), and fewer specialized cancer care and informal caregiver support opportunities (health and health care; Charlton et al., Citation2015; Rozario & Simpson, Citation2018). Caregivers must frequently travel long distances and incur increased travel-related expenditures to access services (Charlton et al., Citation2015; Walling et al., Citation2019). Rural pediatric cancer caregivers spent $96 more than urban caregivers per cancer care-related visit for travel costs (Fluchel et al., Citation2014). Rural cancer patients and their caregivers may be further encumbered with economic instability should they require emergency healthcare and transportation services, suffer lost wages due to missing work for caregiving and the overall high cost of cancer treatment for the recipient (Bouldain et al., Citation2018; Fluchel et al., Citation2014; Ramsey & Dusetzina, Citation2019; Walling et al., Citation2019).

The unique challenges from the neighborhood and built environment, access to health care and financial instability, result in rural caregivers’ negative health outcomes Fewer rural caregivers have been found to rate their perception of personal health as good to excellent (Rozario & Simpson, Citation2018). A lower perceived rating of health is more common among unemployed than employed caregivers, and rural caregivers are more likely to be unemployed (Crouch et al., Citation2017). This economic instability and its associated stress can also lead to negative health outcomes for rural caregivers as well as the creation of and impact on comorbidities (Bouldain et al., Citation2018). Although rural caregivers have higher rates of co-morbidities than urban caregivers, they have a lower percentage of having gone for an annual routine doctors visit (Bouldain et al., Citation2018).

Latino culture, acculturation, reciprocity, and obligation

In addition to the physical location living in a rural/underserved area, the SDH of social and community context can be seen in culture and its influence on outcomes of caregivers. For the Latino population, caregiving is rooted in cultural construction of Latino families (Koerner & Shirai, Citation2019). The process of acculturation, broadly defined as an individuals’ adjustment to their surrounding environment through the adoption of prevailing norms, practices, and behaviors (Abraido-Lanza et al., Citation2006, Citation2016) has been posited as playing a role in expectations of Latino caregiving. Hispanic females are also more likely take on the role of being a caregiver than Hispanic males due to cultural beliefs (Badger et al., Citation2019). A cultural gender expectation that caregiving should be performed by females can relegate the caregivers’ own health to being secondary to caregiving duties, which is a feature of the value of “marianismo” (Badger et al., Citation2019).

In addition to this cultural gender role, Hispanic female caregivers have additional values, such as familism, that influence their caregiving experience. Familism, defined here as sense of obligation to family that may at times require a prioritizing family benefit above individual interests (Campos et al., Citation2014; Flores et al., Citation2020), also encompasses reciprocity as a motive to provide care (Crist et al., Citation2009; Mendez-Luck & Anthony, Citation2016; Crist et al., Citation2009; Mendez-Luck & Anthony, Citation2016). Studies on reciprocity, which have not focused on aspects of culture, found that reciprocity can also be influenced by the nature of the caregiver and care-recipient relationship. This is expressed as internal perceptions that caregivers could potentially require caregiving in the future or desire to reciprocate if they had relied on a caregiver in the past (Del-Pino-Casado et al., Citation2011).

Latino culture, acculturation, and familism specifically can also influence caregiver perceptions related to the expectation to provide care as an obligation and feelings around reciprocity in the caregiver and care-recipient relationship (del-Pino-Casado et al., Citation2018; Segrin et al., Citation2019, Citation2017). When the term “obligation” is viewed through a cultural lens, it has less negative connotations, and more positive association among less acculturated Mexican female caregivers (Del-Pino-Casado et al., Citation2011; Mendez-Luck & Anthony, Citation2016). Other studies on obligation (non-Latina sample where acculturation was not taken into consideration) as motivation for caregiving have shown that this motive can lead to adverse outcomes for health in female caregivers (Hodgkins et al., Citation2011; Wuest et al., Citation2007).

Depression in Latino populations

Acculturation and gender have been found to influence depression in Latino populations. Findings related to the effect of acculturation on depression are mixed. Mexican American caregivers who were categorized as being highly acculturated had higher depression scores (Center for Epidemiological Studies-Depression Scale) than caregivers who were categorized as low acculturation (Hahn et al., Citation2011). In another study, lower acculturation was associated with higher depression, and mothers caring for their daughters with cancer were found to have high depression scores even after controlling for acculturation (Segrin et al., Citation2019). Gender also impacts depression prevalence, with a higher percentage of Latinas (females) experiencing depressive symptoms than males (Wassertheil-Smoller et al., Citation2014).

Theoretical model

In addition to the Social Determinants of Health, Social Exchange Theory may be at work in perceptions of reciprocity affecting caregiver health outcomes (Call et al., Citation1999). In addition to evaluating costs and benefits of being in the caregiver-care recipient relationship, caregivers would also be sensitive to whether their inputs into the relationship are being returned in any way and whether those inputs are causing any harm to the self. When this reciprocity norm is upset, caregivers would be expected to experience distress. In caregivers, acculturation may influence depression directly and indirectly through its relationship with obligation and reciprocity. How the caregiver-care recipient relation is perceived in terms of reciprocity may also be working on its own to influence the caregiver health outcome of depression. In the published literature, these factors and outcomes of caregiving have not been studied together in a model that accounts for rural/medically underserved or urban residence of Latina caregivers.

Purpose of the study

We evaluated the influences of geographical location (urban-rural/medically underserved), survivor–caregiver relationship, obligation, reciprocity, and comorbidities on depression of caregivers of Latinas with breast cancer. The evaluation was guided by the theoretical model shown in .

Figure 1. Rural Latina caregiver theoretical model.

Figure 1. Rural Latina caregiver theoretical model.

Hypotheses

We hypothesized that rural/underserved versus urban area of residence, lower levels of acculturation, and greater comorbidity would be associated with higher depression. Obligation and reciprocity would be influenced by acculturation and also lead to decreased depression.

Methods

The study hypotheses were tested in a secondary analysis of baseline data collected in a randomized clinical trial (RCT) of psychosocial intervention Latinas with breast cancer and their caregivers (Badger et al., Citation2019). A total of 230 survivor–caregiver dyads completed baseline assessment between 2013 and 2017. The RCT was approved by the University of Arizona Institutional Review Board.

Participants

The study sample consisted of caregivers who were providing care to a family member with breast cancer (Badger et al., Citation2020). The caregivers were identified by Latinas with breast cancer. In Arizona, geographic regions that meet the population threshold for rural, as defined by this study, are also medically underserved areas (Arizona Department of Health Services., Citation2019). We increased the definition of rural residence from the U.S. Census definition of <50,000 (United States Census Bureau, Citation2020) to <100,000 due to potential for these populations in Arizona to be underserved through the lens of the SDH. Participants who reported residing in areas with a population of 100,000 or greater were categorized as urban dwellers. The operationalization of this definition of rural/medically underserved versus urban for Arizona provides a unique opportunity to consider the salient SDH context that may affect psychosocial outcomes of the caregiver population.

Study procedures

Participants were recruited in Arizona in both clinical and community settings. Recruitment was conducted at clinical recruitment sites using approved printed materials; at cancer-related community events; and through self-referral (Badger et al., Citation2019). Inclusion criteria for caregiver included: being identified as a caregiver by a Latina survivor with breast cancer; being 18 years of age or older not currently being treated for cancer; fluency in English or Spanish; and access to a telephone (Badger et al., Citation2019).

Data were collected via a telephone-based survey by bilingual interviewers in the language preferred by the participant. The majority of the study participants opted to complete their telephone interview in Spanish. Each participant was mailed a $20 gift card and thank you letter after the baseline assessment.

Measures

Demographic measures included age, marital status, level of education, income, population of the town of residence, living situation as it related to the care recipient (living together or apart), and the participant’s relationship to the care recipient. Presence of chronic conditions was assessed via a checklist that included heart disease, diabetes, chronic obstructive pulmonary disease or other respiratory illness, arthritis, stroke, hypertension, or other. Those who responded “other” were asked to list their health condition. The total number of conditions was calculated based on the checklist.

Acculturation

Acculturation was assessed with the Mexican-American Acculturation Scale. This instrument consisted of seven Likert scale questions, with participants rating each question from 1 (not at all) to 5 (almost always). Questions were a part of the American orientation scale from the Acculturation Rating Scale for Mexican Americans (ARMSA-II; Jimenez et al., Citation2010). Potential total scores ranged from 7 to 35, with higher scores indicative of a higher level of acculturation. The internal consistency reliability of this sample was α = 0.92 (Segrin et al., Citation2019).

Obligation

One question measured the perception of caregiving as an obligation was, “I think it is a moral obligation to care for the survivor.” Participants rated their answers from 1 (strongly disagree) to 5 (strongly agree).

Reciprocity

One question measured reciprocity in the caregiver and care-recipient relationship, “The survivor is very grateful and it gratifies and compensates me.” Participants answered on the scale from 1 (strongly disagree) to 5 (strongly agree).

Depression

The Patient Reported Outcomes Measurement Information System (PROMIS) Emotional Distress Depression Short 8-item Form v 1.0 was utilized. Participant’s answers on the scale: from 1 (never) to 5 (always) were summed into raw scores with potential range of 8–40. Raw scores were converted to the T-score metric in which the US general population had mean 50 and standard deviation 10. The internal consistency reliability of this sample was α = 0.92 (Segrin et al., Citation2019).

Statistical analysis

Descriptive statistics for the variables of interest were tabulated. Based on the distribution of the number of comorbid conditions, comorbidity was categorized as at least one condition versus none. Unadjusted comparisons of rural and urban caregivers were performed using t- or chi-square tests as appropriate.

The multivariable modeling followed the conceptual model and was implemented using general linear models for the PROMIS depression T-scores for the caregivers. The first general linear model included urban versus rural/underserved, comorbidity indicator (at least one condition versus none), and acculturation. The second model had survivor–caregiver relationship added. Models 3 and 4 had obligation or reciprocity added (one at a time, respectively). Finally, Model 5 included all explanatory variables: residence, comorbidity, acculturation, survivor–caregiver relationship, obligation, and reciprocity. The coefficients for the explanatory variables and their standard errors were estimated from these models. Tests of the differences of the coefficients from zero yielded formal test of hypotheses for the association of depression with these factors. All statistical tests were two-sided and performed at .05 level of significance. SAS 9.4 was used for all analyses.

Results

There were no significant differences between urban and rural caregivers on socio-demographic characteristics with the exception of income (). Rural caregivers were slightly but not significantly older. Rural caregivers had higher proportions in the income category of <$10,000 a year; while more urban caregivers than rural had incomes between $10,000 and $19,9999.

Table 1. Characteristics of urban and rural caregivers.

In the first multivariable model, both residence and acculturation were significantly associated with caregiver depression, with urban-dwelling caregivers and less acculturated caregivers reporting higher depression (). When survivor–caregiver relationship was added (model 2), the effect of residence on caregiver depression did not change in an appreciable manner (p = .03; ), but the effect of acculturation on caregiver depression was attenuated (p = .015; ). Mother caregivers had higher levels of depression (p = .008; ) compared to spouses or other caregivers, and this effect was not changed by controlling for obligation (model 3), reciprocity (model 4), or both (model 5). Similarly, urban residence was consistently associated with higher depression regardless of additional covariates.

Table 2. General linear models for caregiver depression: coefficients for the explanatory variables, the standard errors (SEs), and p-values.

Discussion

Depression among caregivers of cancer patients is well established in the literature (Badger et al., Citation2011; Ferrell & Wittenberg, Citation2017; Ugalde et al., Citation2018). A burgeoning literature on depression among Latina caregivers and cancer survivors (Badger et al., Citation2020, Citation2019; Segrin et al., Citation2019) adds novel considerations of the cultural and socioeconomic facets of cancer caregiving specific to Latino/a populations. Consideration of the mechanisms influencing Latina caregiver depression is important to better understand as Latino/as have been found to be less likely to seek out services for mental distress when compared to other cultural groups (Gutnick et al., Citation2017). Our finding of a statistically significant relationship between residence and depression of Latina caregivers in this study extends this body of literature, allowing for an integrative examination of the role of geographic barriers.

Geographic location and the corresponding barriers of access to care are established mechanisms of health disparities in the social determinants of health framework (Asare et al., Citation2017; Singh et al., Citation2017). Geographic barriers have been previously found to have negative impacts on Latino/a health outcomes (Topmiller et al., Citation2016). Neighborhoods and geographic locations with a high density of Latino/as have disproportionately high shortages of mental health services (Dinwiddie et al., Citation2013) which may exacerbate depression in this population as receiving diagnosis and treatment may be complicated by lack of mental health service access (Cook et al., Citation2017). Additionally, primary care settings have been found to play a pivotal role in identifying undiagnosed mental health disorders in Latina (Lopez et al., Citation2018). Latino/a caregivers that reported greater neighborhood-level cohesion have been found to be less likely to report depressive symptoms (S. Rote et al., Citation2019). Rural social ties often qualitatively differ than those reported by urban dwellers. Further research is needed to better understand if perceived social cohesion at the neighborhood-level could influence depression trends in this sample of Latina caregivers.

Regardless of other factors included in previous studies, Latina caregivers with urban residences had consistently higher rates of depression. Globally, living in cities and urban settings is a well-established risk factor for a mental illness (Gruebner et al., Citation2017). Previous studies indicate that depression is pervasive among Latino/a populations (Eghaneyan et al., Citation2017; Liefland et al., Citation2014). Urban Latinas have been found to be at an elevated risk for depression (Dillon et al., Citation2018; Liefland et al., Citation2014). Gutnick et al. (Citation2017) suggest it is unclear if urban Latino/as are reporting symptoms of major depressive disorder or stressors of poor living conditions in an urban setting. Urban stressors in the everyday experiences of the Latina caregivers in this sample may be influential in the findings of this study since these women were more likely to have interconnected stressors, such as full-time employment, not experienced by their rural counterparts in the sample. Further research is needed to better understand the role of geographic context, neighborhood-level characteristics, and the affiliated stressors on Latina caregivers of cancer patients/survivors and rates of depression.

Acculturation was shown to influence depression in the study sample, but its effect was attenuated when controlling for survivor–caregiver relationship. This is understandable as mothers caring for their daughters had lower acculturation levels than other caregivers. The literature on Latino/a acculturation largely points to the protective nature of lower acculturation across multiple health outcomes as referenced in the Immigrant and Latino Health Paradox (Calzada & Sales, Citation2019). Emerging empirical evidence suggests that the protective nature of acculturation may not hold for depression among Latinas in the U.S. (Torres et al., Citation2016). This evidence aligns with the findings of this study. Moreover, lower acculturation is often coupled with a lower degree of resources and social capital available to Latina women (Valencia-Garcia et al., Citation2012). The lack of material resources has been found to have a mediating role in mental health distress among Latino/as (Eghaneyan et al., Citation2017). The role of acculturation on Latina caregiving being non-protective for depression in this sample may be rooted in the cultural expectations of caregiving. Latina caregivers with lower acculturation would be expected to navigate a higher caregiver burden, a greater degree of time, limited outside resources, and more emotional labor (S.M. Rote et al., Citation2017). It is unclear if the findings on acculturation and depression here capture constrained available resources for the caregiver or a heavier caregiver burden, or potentially both. Further research is needed to tease out the dimensions of influence surrounding acculturation in Latina caregivers of cancer patients and emotional labor (S.M. Rote et al., Citation2017).

Mothers have the highest rates of depression, which echoes previous findings (Segrin et al., Citation2019). In this study sample, mothers who also were in the role of caregiver had the lowest levels of acculturation (Segrin et al., Citation2019). There is an abundant body of literature that focuses on parental distress related to childhood cancer (Sultan et al., Citation2016). Little is known about parental distress and depression surrounding adult children with cancer, although it is plausible to assume that confrontation of a life-threatening illness in one’s child is highly stressful at any point in the life span. Latina women, particularly Mexican descent women (Miranda et al., Citation2011), are at a high risk of being diagnosed with early onset breast cancer in women under the age of 50 (Colon-Otero, Citation2020). As trends of early onset breast cancer in this population persists, the rates of Latina mother-caregiver can be anticipated to also expand in size and scope. A better understanding of the experiences of depression and parental distress across Latina mothers with adult children with breast cancer will be vital in shaping cancer outcomes in this population.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the University of Arizona Cancer Prevention and Control Health Disparities Training Program and the National Cancer Institute [T32CA078447] and American Cancer Society [PI: Terry Badger, RSG-12-120-01-CPPB].

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