Professional Documents
Culture Documents
Voices of Mexican American Caregivers For Family Members With Cancer
Voices of Mexican American Caregivers For Family Members With Cancer
Transcultural Nursing
Volume 19 Number 3
July 2008 223-233
On Becoming Stronger
Jo Nell Wells, PhD, RN, OCN
Carolyn Spence Cagle, PhD, RNC
Patricia Bradley, DNS, RN
Donelle M. Barnes, PhD, RN
Texas Christian University
This grounded theory study report describes the experience of 34 Mexican American (MA) female caregivers who provided
care to a family member with cancer. Caregivers identified a process of “Becoming Stronger” as a result of their caregiver
role. The emerging theoretical model of female MA cancer caregiving offers evidence to change current cancer care
approaches from patient-focused to family-focused care for this ethnic group. Findings suggest that changes most respon-
sive to cultural values and likely to provide accessible and quality cancer care for MA families are those that involve active
partnering with MA caregivers to prioritize the patient’s cancer care.
Figure 1
Qualitative Data Analysis Path.
Table 1
Descriptive Demographic Data: Mexican American Family Caregivers
Variable Attributes Frequency (%)
expert and two bicultural bilingual experts, one an expert additional caregivers provided feedback to clarify, vali-
in MA research, the other an expert in cancer care, date, and refine the theory.
worked closely with the three investigators to meet the
study aims. Member checking involving a randomly cho-
sen 30% of the sample validated the ideas at three differ- Findings
ent times in the study and before the evolving theory
assumed its final form (Lincoln & Guba, 1985). The 34 MA female caregivers ranged in age from 21
Investigators and the bilingual grounded theory expert to 63 years (M = 38.5, SD = 11.6), and provided care
met for 1 week to immerse in the data and identify a core ranging from 2 hours per week to 24 hours per day.
category reflective of language used by the caregivers. Based on ASASH scores, the group was low-to-moder-
Previously developed conceptual frameworks then ately acculturated. Care recipients were 13 to 74 years of
moved from descriptive to theoretical levels capable of age (M = 48.7, SD = 18.0). Seventy-five percent of care-
future empirical testing (Speziale & Carpenter, 2003; givers said they were born in Mexico, and several had
Stern, 1980). Additional data evolved from research traveled to the U.S. to give care to a loved one. Those
meeting discussions and memos. On reaching data satu- immigrating to the United States arrived 4 months to 40
ration with 29 caregivers, researchers determined a need years ago. Spanish was the primary language for both
to collect quantitative data from five more caregivers speaking and writing for 10 participants (29.4%),
to ensure adequate power for statistical analyses. These whereas 22 caregivers (64.7%) spoke mostly English but
Figure 2
Mexican American Family Caregiver Experience: Becoming Stronger.
Feeling
Supported Lacking
Support
Strategizing: Struggling:
Providing Care Life Restructuring Hurting too much
Tough, scary
illness
used Spanish to communicate in writing and for the cancer. In this process of “becoming stronger,” care-
interviews. See Table 1 for further descriptive data. givers also found a renewed connection to God, one they
believed might continue to provide support in future
Becoming Stronger struggles and successes of their lives.
Caregivers prioritized the patient’s needs, and this
The basic social-psychological process of MA family necessitated restructuring of their lives to deal with the
caregivers of cancer patients was Becoming Stronger cancer. Life restructuring involved caregivers seeking a
(see Figure 2). MA women, socialized to be caretakers, balance between struggling (“hurting too much”) and
and based on strong feelings of duty to family and belief strategizing to provide quality care for their ill family
in God, emphasized their emotional, cognitive, and spir- member. In this process, those caregivers who experi-
itual growth through assumption of caregiving. The role enced feeling supported to prioritize the patient care
was valued by their families and congruent with the MA most successfully moved toward “becoming stronger.”
cultural value of familism. These women believed it was
possible to grow stronger as an individual and as a family
united against the “scary, tough, and unpredictable event
Life Restructuring
of cancer” by engagement in caregiving. Becoming Life restructuring included the revision of life roles,
stronger included discovering personal feelings of changes in patterns of daily living, and possible residence
importance, life values, appreciation by others, and inter- changes precipitated by prioritizing caregiving demands.
nal rewards for caregiving. These outcomes contributed Caregivers willingly and readily responded first to the
to the caregiver feeling “satisfied with her role.” Other patient’s needs, then to well family members’ needs, and
outcomes of “becoming stronger” included the patient then, if time allowed, to self-care. They believed that care-
getting quality care, the family becoming closer, the care- giving was the “right thing to do” and “nothing is more
giver knowing more about health care and advocacy, important than caring for a sick loved one.” Caregivers
and her faith becoming strengthened. “becoming stronger” responded to patient care needs by providing encourage-
helped caregivers meet their cultural responsibility to ment to the patient, scheduling patient care appointments,
“strengthen the family,” to face the future with options transporting the patient to cancer care services and waiting
appropriate for the family and self, and meet caregivers’ with the patient, housekeeping for the patient, and admin-
goals to provide quality care for the loved one with istration of patient medications (see Table 1).
Being a caregiver is a life changing point, it was Advocating. Caregivers actively pursued health care
life back then and the way it will be from now on. services on behalf of the cancer patient when they per-
Cancer affects everybody in the family. ceived a lack of care or attention to the patient. In
some cases, if the caregiver had not advocated, the
Life restructuring meant changing the family’s usual patient would have received no cancer care at all.
structure and processes. This included having their loved First, the caregivers had to learn to navigate the com-
one with cancer move into the caregiver’s home or hav- plicated health care system to find the public hospital
ing the caregiver leave their home to move into the home and clinic that would serve them. A private nonprofit
of the ill-loved one, even when this meant leaving other hospital health care provider told one patient that she
well family members behind in Mexico or in another should go to Mexico for care because she was undocu-
state. It included relying on fathers to complete child mented. As the caregiver succeeded in advocating for
care normally associated with MA women and relying the patient, she learned she could access desired U.S.
on the family breadwinner to meet all economic needs. health care to better meet the needs of the patient and
Caregivers also gave up paying jobs outside the home to family.
give care full-time. Negative consequences of life
restructuring occurred as caregivers faced difficulties in Being patient. The caregivers dealt with caregiving
balancing work and family demands. Caregivers had less one day at a time and did not share their frustrations with
time with spouse and children, and sometimes developed the ill family member. Being patient was necessary
an argumentative relationship with husbands, if they did because of lengthy cancer treatments. This sometimes
not support caregiving decisions or priorities. resulted in other family members receiving caregiver
Life restructuring positively influenced family anger or hearing about caregiver frustrations hidden
members’ understanding that cancer is a serious illness. from the patient. Being patient allowed the caregiver to
Additionally, caregivers reported children learned to be appear strong to the patient and hold the family together,
sensitive to the ill family member. Life restructuring sources of satisfaction and strength for the caregivers.
allowed caregivers, with family support, to insure their
patient received quality care. As the caregiver maximized Moving forward. To beat the cancer, “moving forward”
care to the ill family member, through a choice to became part of the treatment. Rather than being sad,
restructure her life, she developed insight into her capa- caregivers chose to face the cancer with optimism, fight
bilities, values, and strengths, and this facilitated her own it as the enemy, and helped the patient do the same.
personal growth. Caregivers chose to believe in the doctor and the pre-
scribed treatment, face situations with strength, and
Strategizing: Providing Care for the Patient encouraged the patient to not only accept the cancer
diagnosis but also to confront and overcome it through
Caregivers believed that they could provide care in a the treatment. The caregivers saw themselves as fighting
better way than nonfamily members and, therefore, meet until the very end, trying to always have a positive mind-
their cultural obligation to care. Caregivers felt that when set about victory.
they provide quality care, the patient becomes stronger
and “keeps going.” Examples of providing quality Suffering apart. Caregivers described situations
patient care included being there, advocating, being of “mirroring” or identifying with the patient emo-
patient, moving forward, suffering apart, looking to God, tions, which ranged from sadness to happiness during
and learning more. the caregiver experience. Caregivers consciously
chose to experience sad emotions internally and not
Being there. Caregivers demonstrated “being there” in front of the patient. They expressed their negative
by accompanying or transporting the patient to appoint- thoughts at night by crying, talking to their husbands,
ments, staying with the patient while waiting for or to God, but not by crying in front of the patient or
appointments, and/or helping with shots, pills, and family to avoid “everything falling apart.” One care-
meals. The caregivers believed that the patient might “go giver stated
real fast” (die or die sooner), “may give up” (not take
medicine), or would not be as strong without the care- She will always receive my optimism because that
giver being there. By being there, caregivers worried less is part of the treatment as well. This is nothing, I
and felt increased emotional closeness to the patient and have suffered much worse things; all we must do,
other family members who assisted with care. we must do with enthusiasm and optimism.
Suffering apart appeared to cause significant emo- Struggling: Hurting Too Much
tional work for the caregiver, but she accepted this to have
Although caregivers desperately wanted to give good
a positive self-image and sense of being a good caregiver.
care to their family member, factors interfered with their
Another caregiver stated that she was embarrassed
full ability to do so. For example, one woman said she
because at times she wanted to find someone to help her
had a hard time caring for her mother when she herself
and tell that person everything that she wanted to say.
was “hurting too much.” Although caregivers “hurt too
However, the caregiver believed she could not do this
much,” they identified positive outcomes, such as becom-
based on an obligation or duty to care for her loved one.
ing stronger, from their experience. Components of their
Looking to God. As a part of caregivers’ suffering struggles were being uncertain, having no money, getting
apart, they frequently spoke to and looked to God to sick, and needing an interpreter.
meet their emotional needs. Caregivers responded to the
Being uncertain. When the caregivers could not pre-
“gift God gave them by choosing them to become a care-
dict the future, the disease progress or outcome, they felt
giver,” a perception that strengthened their connection to
uncertainty that led to caregiver feelings of uneasiness
God, their concept of personal strength, and their ability
and mental anguish. One caregiver stated
to successfully provide care. Many caregivers asked God
to give them strength and patience to meet the needs of
We are always wondering what will happen tomor-
the family member with cancer. One caregiver encour-
row. We are always on alert. I thank God and want
aged the patient by saying
to just accept it and live in peace but it’s like a ter-
ror, a real terror.
I assure you that God is with us and He is not going
to leave us and look they [the health care workers] Negative consequences of being uncertain included
are going to take good care of us. the family getting depressed when the doctor did not tell
the caregiver or family about the cancer and how to han-
The caregivers frequently voiced strengthening of
dle it, when promises to deliver health care services were
their faith during the cancer crisis and trusted God that
not kept, “when there is no cure,” or “when they told us
“she [the caregiver] would come out ahead with God’s
she could die at any time.” Caregiver uncertainty also
help.” The caregivers believed that God was the “ulti-
occurred when they watched the patient suffer from the
mate decision-maker” on the patient progress and that
side effects of the cancer treatment: “The way they cure
health care providers worked “under God’s guidance.”
her is the toughest for me.” Caregiver uncertainty also
Caregivers did not attend church regularly but reported
contributed to a delay in obtaining needed palliative care
feeling supported by their faith during the cancer crisis.
services for terminally patients.
Learning more. Caregivers found that the more they Having no money. Having little money and/or insur-
learned about cancer and care resources, the better care they ance to pay for patient care or meet other caregiver needs
could give. “Learning more” within the MA culture often was a frequently expressed challenge. Family members
occurred through interpersonal communication because of contributed extra money or offered live-in arrangements
the strong MA oral tradition. For example, one caregiver to caregivers to help meet their daily living expenses.
mentioned that she did not take time to read books but Expenses escalated when the caregiver brought the
“went by” what other lay people told her. The problem was patient into her home to live. The increased electric, gas,
that she did not know whether that information was accu- and water bills mandated less money for other family
rate. She said, “Sometimes they could be making it up, needs. One caregiver reported
you know?” In general, the amount of learning varied from,
“I can’t change anything because I don’t know how” to The caregiving is really impacting us. Like I take
“I don’t have to ask anymore [because now I know].” off work, I don’t get paid or anything, yet the
Caregivers desired more visual and reading materials expenses increase.
to increase their understanding of both the patient cancer
experience and relevant caregiving approaches. Topics of Getting sick. Caregivers in the study demonstrated a
particular interest for the caregiver were providing emo- range of emotional and physical responses to caregiving.
tional support, medication administration, and meal Caregivers conveyed physical symptoms such as stom-
preparation when the patient experienced side effects of achaches, headaches, lack of restful sleep, inability to get
cancer treatment. out of bed to provide care, and chest pain. Caregivers
agreed that they experienced getting sick when they wor- place. To fully explore the opposite or negative case of
ried a lot, (a) “when the patient is very sick and has com- the “becoming stronger” theoretical construct, we would
plicated care,” (b) when “the illness does not go away or need to find and interview those women as well, some-
even gets worse,” (c) when the patient had a reoccur- thing that was outside the scope of this study.
rence of cancer, and (d) when caregivers could not main-
tain their desired daily routine. Support: Assistance to Strategize
Positive outcomes of getting sick included increased or Barrier to Becoming Stronger
caregiver awareness that their emotional response to
caregiving influenced their physical health. They noted Feeling supported, as expressed by caregivers, came
they needed to control themselves to prevent getting predominantly and readily from the caregiver’s family.
sick because this would allow continued caregiving. Family members, both extended and nuclear, offered
Yet, caregivers viewed symptoms as unassociated with money, child care, housing, and transportation that
caregiver burden and did not change their lifestyle to helped with the practical needs of the caregiver and
deal with caregiver stress. Motivation to take care of patient. Emotional support included listening to the care-
themselves was based on the belief that they could take giver’s frustrations or accompanying the caregiver to the
better care of the patient if they “stayed well.” One clinic. Relatives living out of town called and sent money
caregiver noted on a regular basis.
Professionals also served as a source of informational
If she [patient] is sick, I have to be well so that I and emotional support in some cases. Caregivers generally
transmit only good things to her [patient]. It would spoke highly of the clinic’s humanitarian care. One care-
be so sad if both of us were ill, then who would take giver stated, “Doctors and nurses are an important part of
care of her? I prefer to attend to her myself. our support.” Caregivers stated their appreciation about
being called at home to confirm appointments or when
Needing an interpreter. Caregivers noted that the doc- asked about the patient’s and the caregiver’s status.
tor’s inability to speak Spanish, lack of an interpreter, Caregivers spoke of nurses who encouraged them to take
receipt of late information about services that might help better care of themselves. Other private, nonprofit agen-
the patient during treatment, and the lack of educational cies provided sources of support, mostly through alloca-
materials in Spanish blocked their understanding of can- tion of financial assistance to cover medication costs and
cer and ways to effectively provide patient care. One nutritional drink supplements. However, caregivers did
caregiver noted that she had to bring her daughter to not generally choose to accept outside services the family
serve as an interpreter during clinic visits which was could provide such as transportation services, even though
“even worse and another thing that makes you tense” this could have helped families with limited budgets.
because the daughter could lose her job with her A lack of support occurred when no geographically
absences. Another caregiver noted close family members were available to give practical or
emotional support. Because many MAs in Texas are recent
Sometimes you had to wait more time for the inter- immigrants, they have left the extended family behind in
preter to come but, yes, if there wasn’t an interpreter, their home country and have a smaller social network to
you couldn’t understand anything. rely on. In some cases, the patient had difficulty finding
oncology care, if they were in the United States as undoc-
Negative consequences of needing an interpreter umented immigrants, and without insurance. Anecdotal
included the caregiver feeling “nervous, tense, and experi- stories included being told to return to Mexico for care
encing suffering” because they wondered how they would because they were undocumented. Other barriers to care,
help the patient, and “not getting the patient into care when caregivers did not feel supported, included long waits
early.” These barriers blocked understanding between the in the clinic for appointment times, the lack of Spanish
doctor and caregivers and, in some cases, the patients. print material, and the lack of available interpreters. When
Caregivers in this sample who experienced the most the patient had to provide the interpreter in order for care
struggles during caregiving also expressed more diffi- to be given, it put a further strain on the family and was a
culty becoming stronger. It is possible that there are struggle rather than a support. Caregivers who experienced
other caregivers who experienced so many difficulties feeling supported were best able to effectively strategize to
that they stopped caregiving altogether and were no provide quality care. These caregivers most successfully
longer attending the clinic where our data collection took experienced “becoming stronger.”
of Retired Persons [AARP], 2004). One woman in outcomes of caregiver education for those with limited
the study continued to work during caregiving and education levels. There is a vital role for trained inter-
expressed dismay that the quality of her work suffered preters with knowledge and sensitivity to address the dis-
because of her preoccupation with her mother’s cancer tinct cultural needs of patients and families, particularly
struggles. Other caregivers who quit their jobs when they those without U.S. citizenship, to facilitate positive care
assumed the role of caregiving noted that “their family outcomes to increasing numbers of patients and their
member came first,” and they could always return to work families seeking cancer care in U.S. clinics.
later. Some caregivers found the loss of income and job
stimulation stressful.
The low-to-moderate acculturation range among par-
Conclusion
ticipants may influence more perceived stress and need
This study, rich in both depth and diversity of data, pro-
for greater coping efforts among the Spanish-speaking
vided a valuable opportunity for 34 previously silent, low
caregivers in the study (Jolicoeur & Madden, 2002;
educated women to share their wisdom about the positives
Saldaña et al., 1999). Further long-term study, perhaps
and negatives of caregiving, their perceptions of that role
with completion of sequential interviews during different
on their health, and their emotional quest for quality care
phases of the cancer trajectory (diagnosis, treatment,
and outcomes for their ill family member. Findings indi-
recovery, or reoccurrence) or examination of caregiver-
cated that culture influenced the overall caregiving experi-
patient relationship, might reveal differences in caregiver
ence and informed culturally relevant interventions for
coping or needs. In that case, individualized primary and
this group. Health care providers who are informed by this
secondary prevention interventions to support continu-
caregiving experience and the MA caregiver’s integral role
ance of caregiving, an important cultural role for MA
to the patient access, receipt, and response to cancer care,
women, are required. Further study is needed to more
hold promise for changing current cancer patient care
fully understand the unique needs of caregivers who
approaches that improve MA family health.
appear to straddle both MA traditional beliefs and newer
American beliefs about caregiving or who live in urban
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