Burden and Bad Days Among Mexican-Origin Women Caregivers

Abstract

Objectives

This article examines the construct of burden and the use of coping strategies among Mexican-origin caregivers of older adults.

Methods

In-depth semistructured interviews were conducted with 44 Mexican-origin women caregivers living in the East Los Angeles area. Audio files were transcribed and analyzed in Atlas.ti V7.1.8. Data were analyzed using a grounded theory approach.

Results

Caregivers did not typically talk about caregiving as a burden per se; they used other terms for burden that resonated with their experiences. Caregivers viewed caregiving difficulty in physical and emotional terms as it related to specific caregiving circumstances and situations. Caregivers used a variety of coping strategies to get through bad days, including reframing stressful situations to make sense of their circumstances.

Discussion

Findings shed light on the mixed results found in the literature on Latino caregiving burden. Results suggest that Mexican-origin women caregivers have a more nuanced experience of caregiving burden than has been found in prior literature. Results also suggest research using traditional measures of burden may not fully capture situational and cultural distinctions to the extent Mexican-origin caregivers ascribe other language to represent difficult caregiving experiences.

The caregiving literature is mixed on whether Latino caregivers experience more burden than other racial/ethnic caregiver groups, and what the effect of burden is on their emotional and physical health (Rote, Angel, & Markides, 2015). Latino caregivers are known to care for elderly family members who are in poorer health than their non-Latino counterparts (Gonzalez-Barrera & Lopez, 2013; Markides, Eschbach, Ray, & Peek, 2007; Rote et al., 2015). Yet, some studies report that Latino caregivers experience less caregiver strain (Evercare & National Alliance on Caregiving, 2008), while other studies have shown a relationship between specific caregiving activities, and emotional strain and burden (Anthony, John Geldhof, & Mendez-Luck, 2017; Rote et al., 2015).

These mixed results suggest that Latino caregivers’ appraisals of their caregiving situations may be influenced by cultural factors that are not being captured on existing caregiving assessment tools or measures. Some commonly used measures like the Revised Memory and Behavior Problem Checklist (Johnson, Wackerbarth, & Schmitt, 2001), the Caregiver Strain Index (Thornton & Travis, 2003), and the Zarit Burden Interview (Bédard et al., 2001) attempt to capture the importance of the relationship between caregiving experiences and burden, but do not necessarily address cultural nuances among racial/ethnic groups and/or differences in experiences among Latino subpopulations. Moreover, research that uses the word “burden” or other similar words may not fully capture the strains and constraints as experienced by Latino caregivers, to the extent that Latino caregivers ascribe other language to represent difficult caregiving experiences (Evans, Coon, & Belyea, 2014; Mendez-Luck, Kennedy, & Wallace, 2008). For example, our prior work with Mexican caregivers identified pesado as a cultural construct of burden, in which caregivers described specific situations that were literally or figuratively heavy, equating to emotional heaviness or being taxed physically (Mendez-Luck et al., 2008). Although the word pesado translates literally to “heavy” in English, the concept has not been widely adopted in caregiver burden research among Spanish-speaking Latinos in the United States, including Mexican-origin caregivers.

Additionally, much research with Latinos use scales that were not initially designed for Latino populations, or not particularly for Spanish-speaking individuals (Trapp, Ertl, Gonzalez-Arredondo, Rodriguez-Agudelo, & Arango-Lasprilla, 2018). Scales undergo validation testing in the original target population and are subsequently translated and administered to other target populations, such as Latinos (Szapocznik, Scopetta, & Kurtines, 1978). While scales may undergo validation testing after translation and the translations may hold their meanings, the questions themselves may not be the “right questions” to ask Latinos in the first place (Cuellar, Harris, & Jasso, 1980) because they lack cultural meaning or context. Findings from a survey of Mexican-origin caregivers speaks to this issue. Anthony and colleagues (2017) found nuanced differences in the way these caregivers described their burden level based on how questions were framed. The caregivers in this study associated difficulty with activities of daily living and instrumental activities of daily living (ADL/IADL) with negative emotional outcomes when questions on caregiver burden were worded such that the focus was placed on the activity itself rather than on the family member receiving care. Thus, measuring relevant constructs using culturally meaningful words can facilitate a better understanding of how Latino caregivers experience burden.

Investigating Mexican-origin caregivers’ coping mechanisms can also contribute to our understanding of their experiences of burden. Examining the use of coping strategies in this caregiver population is important because studies have noted higher rates of depression and poorer health outcomes (Pinquart & Sörensen, 2005) among Latino caregivers, and that they utilize formal support services less frequently than non-Latino caregivers (Ho, Weitzman, Cui, & Levkoff, 2000).

Studies of stress and coping among caregivers of older adults have shown that coping style is associated with sociocultural factors that may influence the preference of one strategy over another (Knight & Sayegh, 2010). For example, a study on coping among Latino and Caucasian dementia caregivers showed that Latino caregivers utilized religious coping more frequently than Caucasian caregivers, indicating that cultural values may also influence preferred coping strategies (Coon et al., 2004). Additional studies have shown other influences on coping strategies like subjective burden (del-Pino-Casado, Frías-Osuna, Palomino-Moral, & Pancorbo-Hidalgo, 2011), levels of self-efficacy (Zeiss, Gallagher-Thompson, Lovett, Rose, & McKibbin, 1999), and filial responsibility (Funk, Chappell, & Liu, 2011). Nonetheless, much of the current literature on caregiver burden and coping lacks investigation of Latino-specific cultural influences (Knight & Sayegh, 2010), particularly within Latino subgroups (Dilworth-Anderson, Williams, & Gibson, 2002).

We undertook the present study to examine how Mexican-origin women in East Los Angeles, CA assigned meaning to burden in their caregiving experiences, and particularly to investigate whether the word pesado resonated as a cultural construct of burden with this sample of caregivers. A secondary aim of this study was to investigate women’s strategies for coping during periods of time or situations (i.e., bad days) when they perceived experiencing caregiver burden. The purposes of this article are to describe the common themes and nuances on burden expressed by these women, and to describe their coping mechanisms as formative research for future studies.

Theoretical Framework

This study was informed by social constructionism and three constructs in the literature on Mexican culture—familismo, marianismo, and respeto. Social constructionism stems from the micro-level analytic traditions of symbolic interactionism and phenomenology (Schwandt, 2000), which seek to understand social events on an individual level. Two key features of social constructionism are the linking of a phenomenon—caregiver burden in this study—to social-structural contexts, and the situational, emergent, and defining features of the phenomenon (Bengtson, Burgess, & Parrott, 1997). The social-structural contexts pertinent to burden among Mexican-origin caregivers could include social role expectations (Mendez-Luck & Anthony, 2016) and living arrangements (Cantu & Angel, 2017), among other factors. The situational, emergent, and defining aspects of caregiver burden may involve the care receiver’s illness trajectory, episodic health events, or need for help with basic activities of daily living (Rote et al., 2015) that influence a caregiver’s perceptions and experience of burden. Thus, a social constructionist framework allowed us to examine how women participated in their everyday lives as caregivers, creating and maintaining social meanings for themselves and for those around them. This framework guided the development of the research questions, the questions included on the interview guide, and the interpretation of results.

The constructs of familismo, marianismo, and respeto complemented a social constructionist framework by allowing us to examine Mexican-origin women’s conceptualizations of caregiver burden and coping within the purview of their social and gender roles prescribed in the Mexican culture. We chose these constructs because they are enduring principles in Latino cultures, and they have been offered as separate and complementary constructs to frame the cultural context of elder care in Latino families (Mendez-Luck & Anthony, 2016; Mendez-Luck, Applewhite, Lara, & Toyokawa, 2016). The literature describes familismo as a multidimensional construct that includes values such as strong family attachment, support, obligation, and interconnectedness (Almeida, Molnar, Kawachi, & Subramanian, 2009). Marianismo is a traditional female gender role in the Mexican family that encompasses behaviors of submission and self-sacrifice or self-subjugation (Bridges, 1980; García & de Oliveira, 1997; Lugo Steidel & Contreras, 2003; Nader, 1986; Peñalosa, 1968). This role stems from the iconic figure of the Virgin Mary in the Catholic religion, who is held as the embodiment of la madre abnegada (Hubbell, 1993), or “self-sacrificing mother.” The expectation that a woman sacrifices her own needs and happiness for the sake of her family (Finkler, 1994; Hubbell, 1993) underlies the marianismo role. Thus, fulfillment of the role can be seen as a normative goal that is irrespective of an explicit choice. Respeto refers to “knowing the level of courtesy and decorum required in a given situation in relation to other people of a particular age, sex and social status” (Harwood, Miller, & Irizarry, 1995). Parents use respeto to socialize their children in the appropriate and expected behaviors of respect and deference to older generations (Calzada, Fernandez, & Cortes, 2010). From a social constructionist point of view, caregiver burden and coping among Mexican-origin caregivers are created, negotiated, and maintained from the normative expectations embedded in these three cultural constructs. These constructs aided us in the analysis and interpretation of results.

Method

Study Design and Data Source

We analyzed data from a qualitative study that investigated caregiving constructs among 44 Mexican-origin women caring for community-dwelling, non-institutionalized family members 60 years and older in the greater East Los Angeles area of Southern California (Mendez-Luck & Anthony, 2016; Mendez-Luck et al., 2016). The data were collected between 2006 and 2012 from one-time, in-depth, semistructured interviews, with most interviews occurring in 2006 and 2007 (Mendez-Luck, Trejo, Miranda, Jimenez, Quiter, & Mangione, 2011). All interviews were audio-recorded, conducted in English or Spanish, and lasted an average of 84 min. The interview audio recordings were transcribed verbatim by a professional transcriber or a native-speaking research assistant. The selection criteria included self-identified Mexican-origin women who were at least 18 years of age and responsible for the day-to-day care of a dependent, older adult relative. The older adult relative was defined as a person at least 60 years old and related to the caregiver through blood or marriage. Dependency was defined as needing assistance with one or more IADLs (Lawton & Brody, 1969) or ADLs (Katz, 1983), such as bathing, toileting, grocery shopping, or mobility. An exception to the older adult age requirement was made three times when the older adult was not yet 60 years of age, but was identified as “old” and dependent by their caregiver.

The interview guide addressed four main topics, using open-ended questioning: (a) beliefs about the caregiver role, (b) social and cultural beliefs about aging, (c) story of becoming a caregiver, and (d) forms of assistance and contexts of caregiving. Probing questions were used within each topic to elicit a richer set of responses. The English and Spanish interview guide questions used various words to capture the construct of burden, including burden, difficult, heaviness, pesado, and cargar. We included pesado in the English guide in case a caregiver was bilingual and was familiar with the word. We included cargar because it is the word used most often in Spanish-language translations of burden scales (Martin-Carrasco et al., 2010). Cargar translates in English to “carry” (as a verb) or “load” (as a direct object or metaphor). Table 1 shows sample questions germane to the present study. The institutional review boards of Oregon State University and University of California, Los Angeles approved all study protocols and materials for the main qualitative study and for the present analysis.

Table 1.

Sample Interview Questions

Question
1. Beliefs about the caregiver role  a. What do you like most about being a caregiver?  b. What do you like least about being a caregiver?  c. Some women have explained that sometimes taking care of someone is pesado or heavy. Could you describe for me a situation when taking care of someone is heavy?  d. Other women have said that taking care of someone is an obligation. Do you consider that taking care of someone is an obligation?  e. Has your relative ever told you that it’s your obligation to care for him/her?  f. For you, what does being a burden mean?  g. Does it ever get tiring or difficult to be the only one taking care of your relative?  h. What helps you overcome the bad days?  i. Are there other ways you cope with your situation?  j. Where did you get the sense of responsibility for taking care of your [relative]?
2. Social and cultural beliefs about aging  a. What do you believe the elderly need most?  b. For women who are just starting to take care of their husbands or relatives, what is the important thing that they ought to know?  c. What makes Mexicans different in the way they take care of their elderly loved ones?
3. Story of becoming a caregiver  a. Can you tell me the story of how you became the person in charge of your relative?  b. Did your life change when you started to take care of your relative?  c. How did you adapt to these changes in your life?  d. Do other persons in your household or your family help you?  e. Do you receive any other kind of help to take care of your [relative]?
4. Forms of assistance and contexts of caregiving  a. Can you tell me what things you do to help your relative?  b. How have you adapted the care you provide your relative as they have changes in their health?

Sample

Table 2 presents characteristics of the study sample. Twenty-six participants were born in Mexico, and 18 participants were born in the United States. The mean age of the caregivers was 52.6 years, with a range of 23–89 years, with U.S.-born caregivers being slightly older than those born in Mexico. Immigrant caregivers were slightly younger, slightly less educated, and had lower monthly incomes. Eighty-two percent of caregivers did not work outside of the home. Participants tended to be long-time residents of their neighborhoods, with 30 participants living in East LA, and 14 participants residing in nearby communities. U.S.-born participants reported having lived in their neighborhoods for an average of 36.5 years. Participants who were immigrants reported having lived at their present locations for 22 years on average.

Table 2.

Characteristics of Sample (N = 44)

Characteristic	M	SD	n	%
Caregiver age (in years)	52.6	17.8
Years of caregivers’ education	10.0	4.2
Caregiver employment status
Employed outside home			8	18.2
Marital status of non-spousal caregivers
Married			12	37.5
Never married			9	28.1
Divorced or separated			5	15.6
Widowed			3	9.4
Other			3	9.4

Characteristics of Caregiving Situation

Table 3 presents characteristics of study participants’ caregiving situations. The majority of caregivers (32) cared for non-spousal relatives. Mothers were the most common care receiver; however a higher proportion of immigrant caregivers (31%) reported caring for husbands than did U.S.-born caregivers (22%). Study participants represented a mix of long- and short-term caregiving situations. The mean number of years providing care was 8.3 with a range of 8 months to 62 years. While half of participants had been caring for a family member between 1 and 3 years, five caregivers (three U.S.-born and two immigrant) reported providing care for at least 21 years. High proportions of U.S.-born caregivers and immigrant caregivers shared households with their care receivers (72% and 85%, respectively).

Table 3.

Caregiving Situation of Sample (N = 44)

Characteristic	M	SD	n	%
Care receiver age (in years)	73.4	10.2
Length of caregiving (in years)	8.3	11.7
Median monthly family income	$1,630	1192.8
Number of persons supported on income	3.0	2.6
Caregiver and care receiver share household			35	79.5
Number of family members in household
One			3	6.8
Two			13	29.5
Three			10	22.7
Four or more			18	40.9
Care receiver–caregiver relationship
Husband			12	27.3
Parents			23	52.3
Mother-in-law			2	4.5
Other relatives			7	15.9
Mean number of illnesses per care receiver	1.9
Care receiver illness prevalence by type:
Diabetes			16
Alzheimer’s disease or  related dementia			13
Mobility issues			9
Arthritis			7
High blood pressure			5
Blindness			4
High cholesterol			4
Chronic pain			4
Cancer			3
Dialysis/kidney failure			3
Depression			2
Cardiovascular disease			2
Congestive heart failure			2
Other			11

Care receiver age ranged from 55 to 93 years, with a mean of 73.4 years. The majority of care receivers were immigrants from Mexico and had an average of 6 years of formal education. Care receivers of immigrant caregivers were on average younger, less educated, had a higher average number of co-morbidities, and needed more ADL help, compared to the care receivers of U.S.-born caregivers.

Data Analysis

The interview transcripts were the primary data analyzed for this study, although the first and second author periodically compared emerging results against the interviewers’ memos and observational notes to improve trustworthiness in the study (Lincoln & Gupa, 1985). The transcripts were analyzed in their original language, although some Spanish-language transcripts were translated into English to facilitate the participation of the second author. Except for one case, English-language transcripts corresponded to the U.S.-born women and Spanish-language transcripts corresponded to the immigrant women. The exception was an immigrant participant who was fluent in both languages and opted to be interviewed in English. The interview transcripts were managed in Atlas.ti (Friese, 2014) to facilitate data analysis.

The analysis used a grounded theory approach that involved a systematic and iterative process of examining the text (Corbin & Strauss, 2015). The first author and research assistants trained in qualitative data analysis examined the interview transcripts to develop code lists and identify initial code categories, including those related to burden, coping, and the constructs of familismo, marianismo, and respeto. The transcripts were reviewed independently multiple times by team members, which began with an initial reading of the transcripts. Notes were handwritten on hard copy documents or typed as comments in electronic documents. This initial pass through the data concluded with each team member writing a memo summarizing their first impressions of the data (Charmaz, 2014). The team members independently coded the data in subsequent passes, writing analytic memos after each pass. The team convened after each pass to reconcile the codes and reach consensus on the coding and content. This iterative process was aided by theoretical sampling to reach saturation of the data, which occurred at Interview 18 for the English interviews and Interview 26 for the Spanish interviews. More details about the analytic process can be found in Mendez-Luck and Anthony (2016) and Mendez-Luck and colleagues (2016).

The second author then coded the data independently using the reconciled code list and code categories or domains, as well as formulating new codes from her own multiple passes through the data. The first and second authors met to discuss the coding after each pass. The first author randomly reviewed 50% of the second author’s work as a validation check. This iterative process was continued until consensus on thematic content was reached.

After thematic content was finalized, the three authors compared the coded text in the translated transcripts to the original-language transcripts to make sure cultural nuances in the data were captured. Spanish-language quotes were translated subsequently for use in this article. Pseudonyms were used to protect the identity of study participants.

Results

Views of Caregiver Burden

The study participants were asked a series of open-ended questions to investigate their views of caregiving burden (see Table 1 for sample questions). Most caregivers shared that providing care for their elderly family members was a choice, and therefore did not view caregiving as a burden. They explained further that the term burden was tied to underlying feelings and motivations for doing something one had no choice in doing. Burden occurred when a person was “forced to do something they don’t want to.” One participant explained that to her burden was “like paying your bills.” Another caregiver explained that providing care was a form of generational reciprocity and that the term burden did not apply to caregiving because she thought:

A burden is when you do not want people, and you so say, ‘oh…I have to take care of this person’…I feel it is not a burden for anyone to spend some time with [their relative]…It does not cost me anything because, look, when I was young, many people helped me with my daughters, right?

While the term burden did not resonate with caregivers as a culturally relevant term to describe the overall act of giving care or their status as a caregiver, they openly discussed the physical and emotional difficulties that came with caregiving. They described their difficulties using culturally nuanced terminology such as pesado. As one Spanish-speaking caregiver explained, caregiving was pesado because “it [caregiving] physically and emotionally drains you.”

Participants’ descriptions of being drained revealed that burden or pesado was situational and contextual. Caregivers explained that certain situations momentarily took a toll on them, leaving them with feelings of being overwhelmed, tired, weary, exhausted, and depleted. For example, one participant explained that there were times when her family member, “requires more attention, and I can’t give it to her. That would be a burden to me,” illustrating the situational nature of feeling burdened; the “burden” was from not being able to provide more care, almost a feeling of guilt rather than a taxing burden.

Further analysis of the data showed that study participants’ views of burden or pesado fell in two main categories, physical and emotional, and both had negative consequences associated with them.

Physical burden

Study participants described physically burdensome situations as “physically hard,” “exhausting,” “tiring,” “difficult,” “hard on the body,” “traumatic,” and producing a feeling of physical “heaviness.” Caregivers described instances when the physical nature of caregiving became overwhelming and their own health deteriorated as a result. Many caregivers shared that they were sleep deprived and suffered physical health consequences. One caregiver shared, “I feel bad…from all the sleepless nights…he doesn’t sleep at night. I hardly sleep at night, I sleep 3 or 4 hours, or sometimes I don’t sleep at all…I feel sick, I also have diabetes. I’m sick too.” Norma had cared for her husband Oscar for the past 10 years, at first due to his prostate problems, and later more intensively when he was diagnosed with Alzheimer’s disease. Norma shared a caregiving situation that was physically difficult for her:

I had to physically do the enemas. . . I was getting exhausted. . .Because he wouldn’t know. . . when he was going to go to the bathroom and there would be [an accident], and here I am. . .taking care of it. So, I was really getting tired. I was really physically getting… in fact my son, Michael, would say, “Mom, abuse-you’re hollering at Dad!” I said, “I am tired! That’s why.” It was really getting to me. And then he started falling more . . . So, I wasn’t able to really leave him alone at all because he would be falling for no apparent reason. So, I always had to be on him 24 hours . . . But, yeah, it was very trying. Very trying.

Norma’s physical exhaustion from managing Oscar’s toileting needs affected how she interacted with her husband, compounding the already difficult situation. Many other caregivers shared similar scenarios where the demands of providing care were more than they could handle physically. Another caregiver, Silvia, had been caring for her mother for over 13 years at the time of the interview. She explained the difficulties she encountered in the days following her mother’s operation. She was providing 24-hr care for her mother at the time, while also taking care of her young children and disabled husband: “one has to do it…it has to be done, you understand me? Even though you physically feel that you can’t and at the end of the day you end up exhausted.”

Emotional burden

In addition to physical burden, study participants also described situations that were taxing emotionally. These situations were “straining,” “overwhelming,” “depressing,” “stressful,” “draining,” and “frustrating,” and included the period during which they were transitioning into the caregiver role, managing medications, trying to meet care receivers’ needs while also meeting their own personal needs, and arguing with the older adult. For example, transitioning into the caregiving role and accepting her myriad new responsibilities took a toll on Lupe, who cared for both her mother and her husband. The 41-year-old described moving from Mexico and leaving behind her teaching career to care for her mother in the United States as emotionally pesado:

… it was a carga pesada [a heavy load] for me to carry and my mom was already getting weaker. She was already in her 60’s, near 70’s and…it was very pesado for me to cross over here [i.e., come to the U.S.] and lose my house, job, school, everything, you know?

For Lupe, providing care was emotionally pesado because she had to change her life circumstances and give up other life roles to care for her ailing mother. Many caregivers shared Lupe’s sentiments that the initial onset of the care receiver’s illness was when caregiving was an emotionally difficult period of time.

One caregiver shared her abrupt experience transitioning into the role of caregiver when her husband became disabled. She explained that she was “always crying, always depressed.” Several other caregivers described their feelings about being with their family members as they progressed through their illnesses. One caregiver explained “one has a lot of stress because of everyday work, not only from the physical work but from the emotional work, seeing how the person is, how the sickness is also affecting them.”

Feeling trapped inside the home with the care receiver was another emotionally burdensome experience for many women. One caregiver, 64-year-old Laura, cared for her 71-year-old husband who was on dialysis every 3 days. Laura shared her feelings about being at home all day: “Well…it’s [caregiving] pesado because it’s like a jail…The only troublesome thing is being like incarcerated. That [I’m] taking care of him 24 hours a day.” For Laura, the inability to leave home was the most burdensome aspect of caring for her husband. Becoming homebound was expressed as pesado because it isolated many caregivers from their regular social networks and support systems. One caregiver expressed the emotions she felt when she and her husband could no longer spend time with friends: “It was sadder, since we didn’t participate in anything anymore with friends, parties, no more. We never went anywhere anymore, never.”

Coping Strategies

Caregivers shared a variety of coping strategies that helped them overcome bad days and times when caregiving was burdensome or pesado. Three main strategies emerged from our analysis: disengagement, being connected physically and mentally to others, and faith and retrospection. Most caregivers utilized one or more coping strategies while two caregivers reported not using any coping strategies at all.

Disengagement

Many caregivers expressed that they removed themselves either physically or mentally from a negative situation, which helped them overcome bad days. Caregivers described using distractions to actively or passively disengage themselves momentarily from the situation. Active disengagement involved actions that removed them physically from their environment or kept them occupied in their environment. For example, some caregivers shared that they would “take a walk,” “go shopping,” “go outdoors,” while other caregivers shared that they would “play a game,” “knit,” “keep busy,” “read,” or “listen to music” to get their minds off of negative experiences. Yvette, aged 71, cared for her 69-year-old brother Rudy who suffered from Alzheimer’s disease. Yvette explained how she distracted herself from the reality that she could not leave the home because of having to constantly watch out for her brother. She shared, “…sometimes I start to knit, to sew, or to write…or watch television or something, but…I have to be knitting or doing something.”

Some caregivers described disengagement as an internal process of calming themselves or quieting the mind. Gloria, aged 31, explained how she coped with stress while she cared for her 62-year-old mother who suffered from mobility problems from foot pain:

...Once in a while, if it’s been like a really tough day…I sometimes go out into the porch and I sit down, and I just try to blank out, like just listen to the wind, look at the plants that we have. [I] basically calm myself down and then go back in.

Other women shared similar examples of going outside to clear their minds, meditate, or calm themselves before returning to their duties.

Being connected physically and mentally to others

Some caregivers described being connected physically and mentally with others as a way to keep going and get through bad days. These connections included socializing with family and friends, discussing problems or issues with the older adult care receiver, and attending support groups. Fifty-seven-year-old Victoria cared for her 84-year-old father and shared how support from her daughter and spending time with her grandkids helped her get over bad days:

…what helps me get through a bad day is…having the faith that I know that somebody is there for me. All I have to do is reach out and ask for the help. My daughter has been a very good support...she’ll come over and she’ll say, “Mom, you gotta get out. Mom, you’re isolating” …My grandkids, they keep me going [too]. …Knowing that somebody’s there just listening. …It’s just her support and knowing that she’s there and that her kids are there.

Like many other participants, Victoria’s connections within her family network—specifically her daughter and grandchildren—provided a sense of support and closeness that she relied on to keep her spirits up during difficult caregiving times.

Gabriela, aged 43, cared for her 53-year-old husband who was legally blind. She was reluctant to leave him alone or with another person and struggled with emotional and physical burnout after the sudden onset of his illness. Gabriela explained how visiting with a social worker and attending a caregiver retreat helped her during a particularly distressing time:

…The social worker for me, that was like my second home…and she told me if I wanted to go to a retreat, she said, ‘I think that it’s going to help you a lot’…and the first thing I said was, ‘Can I take him with me?’ She said, ‘no, it’s…so that you can get away for a couple hours…when she said no, I told her then I won’t go…because I don’t have anybody to leave him with and she said,…‘they can…take care of him while you’re over [there]’…I went and I remember that they gave me a massage…and I stayed but [I was] completely asleep…I didn’t wake up until dinner time…

Gabriela was able to make a connection with a social worker who supported her through the difficult time she was having adjusting to caring for her husband. Through the support of the social worker, Gabriela was able to gain access to additional services such as respite care so that she could attend a caregiver retreat.

Faith and retrospection

Half of all caregivers discussed using religious/spiritual coping strategies to ease their burden. Some participants coped by going to church, attending spiritual retreats, praying, or looking to God for strength. Many study participants shared experiences of relying on the support and strength of prayer to make it through particularly trying days. Ana was 66 years old and cared for her 67-year-old husband, Lalo, who could not walk. Ana described how faith in God helped her through days when she had to do her least favorite caregiving tasks and the days when Lalo was particularly irritable:

I start praying and I ask God…or I go to the church…and I say, ‘Dios mio [Oh my God] help me because I don’t know what I’m going to do’ and…that helps me, it must be the faith, right?. And then… I tell myself there are other worse things and people overcome them. Well, why can’t I, right?

Ana felt that the act of praying to God and asking for help alleviated much of her stress and allowed her to continue caring for her husband. For Ana, and many other women, prayer had a calming effect during difficult times.

God was also credited with giving strength to caregivers when they needed to overcome bad days. One caregiver shared that her faith in God was what helped her overcome the challenging days caring for her mother:

That is what gives me strength. I go and ask God for help…and give me strength to keep helping her... Prayer gives me strength. …[It] helps me keep going and I imagine that is what gives her strength too….

Some participants coped by reflecting on their situations and trying to make sense of or look for the higher good in being a caregiver. They described talking to themselves, reflecting on their lives, and looking for meaning in otherwise challenging situations that could not be changed. Some caregivers remembered their childhoods when their family member was patient with them while others shared the importance of maintaining an internal strength, “toughing it out,” “trying to make the best of [difficult] situations,” and “having hope in the future.”

Discussion

This study sought to examine how Mexican-origin women conceptualized caregiver burden and coping in terms of their cultural beliefs, social norms, role functioning, and familial obligations. This study moves the field forward by using a theoretical framework and cultural constructs to ground Mexican-origin caregivers’ views of burden and coping in a culturally relevant and meaningful context. Dilworth-Anderson and colleagues (2002) have pointed out that the lack of theory in research on racial/ethnic caregiver populations has limited the understanding of caregiving in these populations. Thus, our findings may shed light on the mixed results found in the literature on Latino caregiving burden. Specifically, caregiver burden, as perceived by this sample of Mexican-origin caregivers, was influenced by cultural concepts; pesado may be a more appropriate culturally relevant term that can provide a richer meaning of burden than is currently applied to research in Latino caregiving populations.

One initial and notable finding was the paradox between burden and choice. The word “burden” did not resonate with this sample of caregivers to describe their overall status as caregivers or their caregiving situations because they considered caregiving as a matter of choice, rather than as a prescribed role or obligation. This finding is consistent with research showing the positive attributes of caregiving, such as giving meaning and purpose to caregivers (Brown, Nesse, Vinokur, & Smith, 2003; Pinquart & Sörensen, 2003). This finding also supports the principles of familismo and marianismo, whereby women are socialized to view caregiving within the purview of their designated family and social roles and responsibilities (Lugo Steidel & Contreras, 2003; McDermott & Mendez-Luck, 2018). From a social constructionist point of view, caregivers created meaning of challenging circumstances to frame caregiving as a choice to fulfill culturally specific gender roles. Yet, they pushed the boundaries of marianismo in that they allowed themselves to discuss the difficulties of caregiving, suggesting a sense of agency rather than passivity. The tension between fulfilling traditional roles and asserting their agency points to a potential shift in the traditional definition of marianismo and self-sacrifice. This finding may help understand previous research showing that Latino caregivers have low overall subjective burden ratings (Coon et al., 2004), while providing high levels of physically demanding ADL/IADL assistance to their family members (Evercare & National Alliance on Caregiving, 2008).

A second contribution to the literature is the finding that caregivers used culturally nuanced language, such as difficult, draining, and overwhelming, to describe to caregiving experiences that prior literature has characterized as a burden (Shahly et al., 2013). While caregivers did not speak of caregiving as a burden per se, they described it as emotionally and physically tiring or pesado when related to specific experiences or circumstances. These findings support previous research with Mexican female caregivers (Mendez-Luck et al., 2008) and reflect the literature on other racial/ethnic caregiver populations that conceptualizes burden as the physical, emotional, social, and financial hardships experienced by family caregivers (Deeken, Taylor, Mangan, Yabroff, & Ingham, 2003; Schulze & Rössler, 2005; Zarit, 2004). These findings are supported further by prior research documenting the psycho-social consequences of caregiving, including depression, stress, and poor health outcomes (Chappell & Reid, 2002; Chumbler, Grimm, Cody, & Beck, 2003; Spurlock, 2005).

Additionally, our findings on the situational distinctions and culturally relevant wording of burden have important implications for measurement of the construct in this Latino subgroup. Caregivers’ descriptions of pesado focused on the caregiving task or instrumental activity being performed rather than the care-receiving individual. For example, caregivers viewed tasks related to personal hygiene as physically burdensome or pesado activities that took a toll on their bodies. This finding is supported by research showing that difficulty with ADLs and IADLs was associated with negative emotional outcomes when questions on caregiver burden were worded such that the focus was placed on the activity itself rather than on the family member receiving care (Anthony, John Geldhof, & Mendez-Luck, 2017). Some burden measures ask caregivers to rate how much certain behaviors bother them or are upsetting to them (Johnson et al., 2001). Our results showed that burden was a complex construct with emotional and physical dimensions that are contextual to time and circumstance. Ratings could miss these important subtleties for Mexican-origin caregivers. The usage of the word burden and its literal translations in Spanish (cargar, encargar, or sobrecargado) are used extensively in caregiver burden measures (Martin-Carrasco et al., 2010; Zarit, 2004). Caregivers in the present study did not use those same words to describe burden. Thus, our findings suggest prior research on Latino caregivers may not have fully captured their experiences using traditional measures of caregiver burden. Our findings further suggest a need to measure burden or pesado with culturally meaningful language and constructs to develop more valid measures of burden or pesado.

With respect to coping, we found that caregivers used various strategies to overcome difficult days and situations of caregiving. The caregivers relied on themselves in acts of self-sacrifice and received mostly emotional support from their family and social networks to cope with the difficulties of caregiving. These strategies reflected aspects of familismo, wherein value is placed on the family as an institution despite the personal cost, and family members have responsibilities to each other to provide support (Almeida et al., 2009; Mendez-Luck et al., 2016; Mendez-Luck, Amorim, Anthony, & Neal, 2017). Gelman’s (2014) work with Latino Alzheimer’s caregivers showed similar results in that familismo structured their caregiving experiences, whether for the better or for the worse. Furthermore, the compromise suggested by some of the caregivers’ coping strategies provides evidence that they fulfilled the tenets of marianismo (Hubbell, 1993) through self-sacrificing actions.

Some caregivers reframed stressful situations by looking for the higher good and trying to make sense of their circumstances, which is consistent with a form of internal emotion-focused coping defined as perspective taking (Aldwin, Yancura, & Boeninger, 2010). The caregivers’ perspective taking may reflect the Latino cultural value of respeto (Calzada et al., 2010). It could be that some caregivers coped with perceived caregiving hardships by viewing their elderly family members through a lens of reverence that mitigated the negative emotional impact of specific situations. This is consistent with research showing the benefit of positive reappraisals to caregiver well-being (Rapp & Chao, 2000).

Other caregivers coped through disengaging from their immediate situation, suggesting that reframing by itself may not be a sufficient form of coping. Coping through disengagement has been described as a less productive form of coping that may actually increase depressive symptoms among caregivers (Knight & Sayegh, 2010). However, we found that disengagement took many forms, some of which might be inadvertently protective for the caregiver. For example, some caregivers indicated they went for walks as a way to remove themselves momentarily from particularly stressful events. This form of avoidant coping (Aldwin et al., 2010) actually may be an effective strategy for circumstances that cannot be changed, such as long-term caregiving. Moreover, walking as a form of exercise has been shown to combat the negative effects of stress (Lee & Buchner, 2008), even if not done by caregivers explicitly for the physical health benefits. Thus, walking as well and other acts of disengagement, like getting a massage, meditating, and listening to music, could be considered forms of self-care. This finding contrasts with other findings that Latina caregivers do not engage in self-care practices (Wells, Cagle, Marshall, & Hollen, 2009) and that caregiving is associated with physical inactivity and low levels of self-care (Hoffman, & Mendez-Luck, 2011; Janevic & Connell, 2004).

Lastly, caregiver’s reports of utilizing religious coping through attending church, praying, and talking directly to God support previous research showing benefits in the use of religious coping. Campesino and Schwartz (2006) and Evans, Crogan, Belyea, and Coon (2009) found that Mexican American women developed personal relationships with religious figures that allowed them to speak intimately with them regarding the struggles of caregiving, thus providing a strong foundation for coping when needed. A growing body of literature suggests that religious coping is a positive strategy that can potentially offset some of the burden experienced by caregivers (Herrera, Lee, Nanyonjo, Laufman, & Torres-Vigil, 2009). Further research is still warranted to identify the specific types of religious coping that are most beneficial to caregivers, particularly with respect to Mexican-origin caregivers.

Using the frame of social constructionism, we can theorize that women created meaning through negotiating their experiences within themselves and with others, especially their elderly family members. The long-standing and emerging aspects of their life situations framed how they sought solutions to problems, interacted within their family networks, and thus how they perceived burden in their caregiving experiences. This in turn shaped how women responded to the burden perceived within their created realities as caregivers.

Limitations of the Study

This study has some limitations. First, men were not included in the study, although 34% of caregivers nationally are men (National Alliance on Caregiving, 2009). Future studies should incorporate men’s experiences to gain a better understanding of gender differences in caregiving burden and coping among Latinos. This study did not examine thematic findings by sample characteristics, such as language or years in the United States. Instead, we sought to identify universal themes from the entire data, allowing us to focus on similarities rather than differences and to propose findings that warrant further examination. Further research is needed to understand how potentially important distinguishing characteristics, such as generational status, acculturation, nativity, and gender, may influence conceptualizations of burden within this and other Latino subgroups.

Conclusion

This study provides a starting point for future research to broaden the understanding and measurement of burden among Latino caregivers, perhaps through the development of a new burden scale with questions on situational difficulties or hardships and emotional drain or tiredness. Researchers using existing burden scales might consider revising questions to use terms such as pesado to capture the cultural nuances of burden unique to this Latino subgroup. Moreover, these results provide a window to further examine the relationship of caregiving as pesado and health among diverse Latino caregivers, particularly the relationship between caregiving-driven isolation and physical and mental health. Future translational research should take care not to solely explain caregiving among Mexico-origin women in terms of burden, but to identify culturally appropriate caregiving constructs in this population to develop culturally appropriate interventions and support programs.

Funding

This work was supported by the Aetna Foundation (20072361 to C. A. Mendez-Luck); the Drew/UCLA Project EXPORT Center by National Institutes of Health/National Center on Minority Health and Health Disparities (P20MD000182); the UCLA Resource Centers for Minority Aging Research/Center for Health Improvement for Minority Elderly under National Institutes of Health/National Institute on Aging (P30AG021684); the National Institutes of Health (1K01AG033122 to C. A. Mendez-Luck); and the National Science Foundation (DGE 0965820).

Conflict of Interest

None reported.