You are on page 1of 11

Voices of Mexican American Caregivers

for Family Members With Cancer

Journal of
Transcultural Nursing
Volume 19 Number 3
July 2008 223-233
2008 Sage Publications
10.1177/1043659608317096
http://tcn.sagepub.com
hosted at
http://online.sagepub.com

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 responsive 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 patients cancer care.
Keywords:

Mexican American; caregivers; cancer; culture; strength

diagnosis of cancer in a Mexican American (MA)


family member significantly affects the entire
family, especially female family members who usually
provide cancer care in the home. Cultural beliefs of
familism and adherence to gender-specific roles (Juarez,
2003; Mendelson, 2002; Phillips, Torres de Ardon,
Komnenich, Killeen, & Rusinak, 2000) provide rationale
for MA women providing this care. Although MAs are
the fastest growing ethnic group in the Southwestern
United States, and cancer is the second leading cause of
death among Hispanics (American Cancer Society,
Texas Division, 2006; U.S. Census Bureau, 2006), no
specific theories exist to guide culturally sensitive care
approaches to MA female caregivers of cancer patients.
MA caregivers are usually women, less educated than
Non-Hispanic White (NHW) caregivers, and they care
for recipients in poorer health than those cared for by
NHWs (Carrasquillo, Lantigua, & Shea, 2000; Crist,
Garcia-Smith, & Phillips, 2006). Compared to NHWs,
they typically have lower incomes, limited English language skills, greater competing life roles, and greater
change of informal networks of family caused by acculturation (Borrayo & Jenkins, 2001; Crist, Velaquez,

Durnan, & Figueroa, 2006). These factors contribute to


role-related emotional distress and negative physical
health consequences among MA females, despite historically strong family support (Crist, Garcia-Smith, &
Phillips, 2006; Juarez, 2003).
Existing general knowledge about female caregiving
sheds little insight into the specific influence of culture
on MA female cancer family caregiving (Ayalong, 2004;
Navaie-Waliser et al., 2002). This lack of knowledge
critically impairs the ability to plan effective culturally
and socially relevant nursing interventions that improve
the care of the affected family member and effectively
support their caregiver. Ideally, this support should be
based on an underlying theoretical perspective that
comes from a clear understanding of perceived needs
Authors Note: National Institutes of Health/National Institutes of
Nursing Research funded this project, R15 NR008510-01A1
Mexican American: Family Caregiver Experience. Drs. Wells, Cagle,
and Bradley served as investigators. Dr. Barnes was a research associate. Correspondence concerning this article should be addressed to
Jo Nell Wells, Texas Christian University, Harris College of Nursing
and Health Sciences, 2800 West Bowie, Fort Worth, TX 76129;
e-mail: J.Wells@tcu.edu.

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

223

224 Transcultural Nursing

and difficulties experienced by MA caregivers.


Therefore, the purpose of this study was to discover the
underlying social-psychological processes of MA female
caregivers when caring for a family member with cancer
and to develop a culturally relevant theory that might
guide relevant care approaches to MA caregivers and
their families. A grounded theory qualitative approach
was used to investigate the MA family cancer caregiver
experience from the caregivers viewpoint. Grounded
theory techniques were appropriate to elucidate knowledge about this experience, where little formal inquiry
existed (Glaser, 1992; Speziale & Carpenter, 2003).

Methods
Sample
Purposive sampling was used to select the sample of
34 female MA family caregivers of cancer patients
attending a public outpatient oncology clinic in the
Southwestern United States. Male caregivers were not
included, based on documented evidence that most MA
caregivers are female (Ayalong, 2004; Crist, GarciaSmith, & Phillips, 2006; Juarez, 2003). Those who completed the study came from a pool of 62 women who
received information about the study. All caregivers who
started the study completed both interviews. Of those
who expressed interest in participating in the study, 14
did not meet eligibility criteria, and 14 others could not be
located for study participation. Inclusion criteria included
self-identification as MA, living in the United States,
being age 21 years or older, being biologically linked to
the care recipient, acting as a family members primary
cancer caregiver for at least 1 month, and able to speak
English or Spanish. All participants acknowledged that
they were not receiving reimbursement for providing
care, receiving psychiatric care, abusing drugs or alcohol,
or participating in a caregiver support or educational
group. For purposes of this study, MA ethnicity was
defined as being born in Mexico or having a parent or
grandparent born in Mexico. All caregivers stated that the
care recipient required their assistance because of cancerrelated causes and were willing and able to communicate
their perceptions of the caregiving experience. The study
was approved by the investigators Institutional Review
Board and clinical agencys Human Subjects Review
Committees. Informed consent was obtained from prescreened potential participants prior to enrollment, with
assurance that all research materials would be locked in a
file accessible only to the researchers.

Data Collection
Data from two different interviews were collected by
two investigator-trained bilingual and bicultural student
research assistants (RAs), who were proficient in both
English and Spanish, with Spanish as their native language. The investigators trained and then closely monitored each RAs adherence to the study protocol. To
adapt to possible low literacy issues among participants,
RAs read all materials in the participants preferred language. Interviews occurred in a private and comfortable
place in the clinic or in the patient home as selected by
the caregiver. Two instruments were administered during
the first 30- to 45-minute interview: an investigatorgenerated demographic tool and the 12-item ASASH (A
Short Acculturation Scale for Hispanics; Marin, Sabogal,
Marin, Otero-Sabogal, & Perez-Stable, 1987). ASASH
data provided information that helped delineate possible
caregiver preferred language for the second interview,
including qualitative questions. Each caregiver received
a special recognition certificate acknowledging contributions to the study and to her family.
The second interview, lasting 45 to 90 minutes,
occurred 2 weeks later and was audiotaped. The RA used
a semistructured interview guide with open-ended questions to gain information about the participants experience of cancer caregiving. The initial overall interview
question was, Tell me what being the main caregiver for
your family member [aunt, mother, son] with cancer is
like for you. Prewritten probes encouraged the caregiver
to elaborate on a question if desired. An investigator
accompanied the RA to each interview to guide and monitor data quality and interview efficacy. The investigator
added any necessary follow-up questions at the conclusion of the interview. Each caregiver was given a $60.00
gift certificate to acknowledge her contribution of time.
Twenty-two interviews occurred in Spanish and 12 in
English. Spanish interviews were transcribed by the RAs
first in Spanish, then they were translated into English. A
bicultural-bilingual consultant selectively checked for
congruency of audiotape and transcriptions (both English
and Spanish; see Figure 1). Discussion among the RAs,
the investigators, and the consultant rectified any discrepancies, errors, or omissions. Memos composed by the RA
and investigator immediately after each interview provided further information regarding the context. NVivo
(QRS International, 2005) computer software was used to
organize data into categories for coding (Figure 1). Close
adherence to criteria used to evaluate qualitative studies
(Emden & Sandelowski, 1999; Speziale & Carpenter,
2003) helped assure qualitative rigor of the study.

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

Wells et al. / Mexican American Cancer Family Caregivers 225

Figure 1
Qualitative Data Analysis Path.
Investigators Journaling began process

Interview yielded audiotape recording & memo data


Bi-Cultural
Consultant
reviewed the first
4 transcripts,
th
then every 4
tape & transcript
for congruency

RA transcribed audiotape into Spanish then English

Journaling continued

2 Co-investigators did separate


line-by-line analysis

Bilingual
GT Expert
separately coded
st
1 4 transcripts &
met with team
once per month

Bi-Cultural
Collaborator
reviewed for
cancer cultural
context

PI did
line-by-line analysis

Open Coding, Axial Coding, Selective Coding


Separately coded concepts, determined provisional
hypotheses, categories, and subcategories; wrote theoretical
memos; used NVivo for data management

Journaling continued

In weekly group meetings investigators


shared data interpretation; negotiated
mutually acceptable codes and definitions;
composed theoretical memos; developed
hypotheses; and consulted literature until
theoretical saturation was reached yielding
the theoretical model

Data Analysis
Initially, the investigators engaged in introspection via
journaling (completing diary entries) to identify assumptions on MA caregiving (see Figure 1). Ongoing journaling helped investigators examine preconceived ideas and
compare those with the caregivers narrative, concepts,
and processes (Speziale & Carpenter, 2003). Data analysis began simultaneously with data collection as investigators worked separately and then together in weekly
meetings to identify concepts emerging from open, axial,
and selective coding (Glaser, 1992; Strauss & Corbin,

1998). Axial coding included identifying category properties (characteristics) and dimensions (range of properties), range of conditions, actions/interactions and
outcomes of a phenomenon, and specifying relationships
between categories and subcategories based on close
inspection of the data (Strauss, 1987).
Conceptual diagramming, done during axial coding,
helped organize and visualize the data. Literature
resources helped fill in gaps in the evolving theory and
add greater breadth to the theoretical description (Stern,
Allen, & Moxley, 1982). A bilingual grounded theory

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

226 Transcultural Nursing

Table 1
Descriptive Demographic Data: Mexican American Family Caregivers
Variable
Marital status

Care recipient: Relationship to caregiver

Caregiver schooling completed

Caregiver perception of her health status

Caregiver roles responsive to patient needs

Attributes

Frequency (%)

Married
Single
Divorced
Single but living with someone else
Child
Parent
Spouse
Sister
Niece
Other
Never attended school
Primary (age 6-12 years)
Secondary (age 13-15 years)
High school (age 16-18 years)
College
Poor
Fair
Good
Very good
Excellent
Toileting
Eating
Getting out of bed
Walking
Telephoning
Dressing
Bathing
Making appointments
Housekeeping
Medications
Transportation
Encouragement

expert and two bicultural bilingual experts, one an expert


in MA research, the other an expert in cancer care,
worked closely with the three investigators to meet the
study aims. Member checking involving a randomly chosen 30% of the sample validated the ideas at three different times in the study and before the evolving theory
assumed its final form (Lincoln & Guba, 1985).
Investigators and the bilingual grounded theory expert
met for 1 week to immerse in the data and identify a core
category reflective of language used by the caregivers.
Previously developed conceptual frameworks then
moved from descriptive to theoretical levels capable of
future empirical testing (Speziale & Carpenter, 2003;
Stern, 1980). Additional data evolved from research
meeting discussions and memos. On reaching data saturation with 29 caregivers, researchers determined a need
to collect quantitative data from five more caregivers
to ensure adequate power for statistical analyses. These

25 (73.5)
4 (11.8)
3 (8.8)
2 (5.9)
12 (35.5)
8 (23.5)
7 (20.0)
4 (11.8)
2 (5.9)
1 (2.9)
2 (5.9)
7 (20.6)
8 (23.5)
12 (38.3)
1 (2.9)
2 (5.9)
3 (8.8)
18 (52.9)
6 (17.6)
5 (14.7)
3 (8.8)
5 (14.7)
7 (20.6)
6 (23.5)
9 (26.5)
11 (32.4)
12 (35.3)
20 (58.8)
26 (76.5)
28 (82.4)
29 (85.3)
31 (91.2)

additional caregivers provided feedback to clarify, validate, and refine the theory.

Findings
The 34 MA female caregivers ranged in age from 21
to 63 years (M = 38.5, SD = 11.6), and provided care
ranging from 2 hours per week to 24 hours per day.
Based on ASASH scores, the group was low-to-moderately acculturated. Care recipients were 13 to 74 years of
age (M = 48.7, SD = 18.0). Seventy-five percent of caregivers said they were born in Mexico, and several had
traveled to the U.S. to give care to a loved one. Those
immigrating to the United States arrived 4 months to 40
years ago. Spanish was the primary language for both
speaking and writing for 10 participants (29.4%),
whereas 22 caregivers (64.7%) spoke mostly English but

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

Wells et al. / Mexican American Cancer Family Caregivers 227

Figure 2
Mexican American Family Caregiver Experience: Becoming Stronger.

Becoming Stronger

Feeling
Supported

Ill family member gets quality


care
Family gets closer
Caregiver feels satisfied
Caregiver knows more
Caregivers faith is strengthened

Lacking
Support

Strategizing:

Struggling:

Providing Care

Hurting too much

Life Restructuring
Tough, scary
illness

Duty to family

Belief in God

used Spanish to communicate in writing and for the


interviews. See Table 1 for further descriptive data.

Becoming Stronger
The basic social-psychological process of MA family
caregivers of cancer patients was Becoming Stronger
(see Figure 2). MA women, socialized to be caretakers,
and based on strong feelings of duty to family and belief
in God, emphasized their emotional, cognitive, and spiritual growth through assumption of caregiving. The role
was valued by their families and congruent with the MA
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
of cancer by engagement in caregiving. Becoming
stronger included discovering personal feelings of
importance, life values, appreciation by others, and internal rewards for caregiving. These outcomes contributed
to the caregiver feeling satisfied with her role. Other
outcomes of becoming stronger included the patient
getting quality care, the family becoming closer, the caregiver knowing more about health care and advocacy,
and her faith becoming strengthened. becoming stronger
helped caregivers meet their cultural responsibility to
strengthen the family, to face the future with options
appropriate for the family and self, and meet caregivers
goals to provide quality care for the loved one with

cancer. In this process of becoming stronger, caregivers also found a renewed connection to God, one they
believed might continue to provide support in future
struggles and successes of their lives.
Caregivers prioritized the patients needs, and this
necessitated restructuring of their lives to deal with the
cancer. Life restructuring involved caregivers seeking a
balance between struggling (hurting too much) and
strategizing to provide quality care for their ill family
member. In this process, those caregivers who experienced feeling supported to prioritize the patient care
most successfully moved toward becoming stronger.

Life Restructuring
Life restructuring included the revision of life roles,
changes in patterns of daily living, and possible residence
changes precipitated by prioritizing caregiving demands.
Caregivers willingly and readily responded first to the
patients needs, then to well family members needs, and
then, if time allowed, to self-care. They believed that caregiving was the right thing to do and nothing is more
important than caring for a sick loved one. Caregivers
responded to patient care needs by providing encouragement to the patient, scheduling patient care appointments,
transporting the patient to cancer care services and waiting
with the patient, housekeeping for the patient, and administration of patient medications (see Table 1).

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

228 Transcultural Nursing

Being a caregiver is a life changing point, it was


life back then and the way it will be from now on.
Cancer affects everybody in the family.
Life restructuring meant changing the familys usual
structure and processes. This included having their loved
one with cancer move into the caregivers home or having the caregiver leave their home to move into the home
of the ill-loved one, even when this meant leaving other
well family members behind in Mexico or in another
state. It included relying on fathers to complete child
care normally associated with MA women and relying
on the family breadwinner to meet all economic needs.
Caregivers also gave up paying jobs outside the home to
give care full-time. Negative consequences of life
restructuring occurred as caregivers faced difficulties in
balancing work and family demands. Caregivers had less
time with spouse and children, and sometimes developed
an argumentative relationship with husbands, if they did
not support caregiving decisions or priorities.
Life restructuring positively influenced family
members understanding that cancer is a serious illness.
Additionally, caregivers reported children learned to be
sensitive to the ill family member. Life restructuring
allowed caregivers, with family support, to insure their
patient received quality care. As the caregiver maximized
care to the ill family member, through a choice to
restructure her life, she developed insight into her capabilities, values, and strengths, and this facilitated her own
personal growth.

Strategizing: Providing Care for the Patient


Caregivers believed that they could provide care in a
better way than nonfamily members and, therefore, meet
their cultural obligation to care. Caregivers felt that when
they provide quality care, the patient becomes stronger
and keeps going. Examples of providing quality
patient care included being there, advocating, being
patient, moving forward, suffering apart, looking to God,
and learning more.
Being there. Caregivers demonstrated being there
by accompanying or transporting the patient to appointments, staying with the patient while waiting for
appointments, and/or helping with shots, pills, and
meals. The caregivers believed that the patient might go
real fast (die or die sooner), may give up (not take
medicine), or would not be as strong without the caregiver being there. By being there, caregivers worried less
and felt increased emotional closeness to the patient and
other family members who assisted with care.

Advocating. Caregivers actively pursued health care


services on behalf of the cancer patient when they perceived a lack of care or attention to the patient. In
some cases, if the caregiver had not advocated, the
patient would have received no cancer care at all.
First, the caregivers had to learn to navigate the complicated health care system to find the public hospital
and clinic that would serve them. A private nonprofit
hospital health care provider told one patient that she
should go to Mexico for care because she was undocumented. As the caregiver succeeded in advocating for
the patient, she learned she could access desired U.S.
health care to better meet the needs of the patient and
family.
Being patient. The caregivers dealt with caregiving
one day at a time and did not share their frustrations with
the ill family member. Being patient was necessary
because of lengthy cancer treatments. This sometimes
resulted in other family members receiving caregiver
anger or hearing about caregiver frustrations hidden
from the patient. Being patient allowed the caregiver to
appear strong to the patient and hold the family together,
sources of satisfaction and strength for the caregivers.
Moving forward. To beat the cancer, moving forward
became part of the treatment. Rather than being sad,
caregivers chose to face the cancer with optimism, fight
it as the enemy, and helped the patient do the same.
Caregivers chose to believe in the doctor and the prescribed treatment, face situations with strength, and
encouraged the patient to not only accept the cancer
diagnosis but also to confront and overcome it through
the treatment. The caregivers saw themselves as fighting
until the very end, trying to always have a positive mindset about victory.
Suffering apart. Caregivers described situations
of mirroring or identifying with the patient emotions, which ranged from sadness to happiness during
the caregiver experience. Caregivers consciously
chose to experience sad emotions internally and not
in front of the patient. They expressed their negative
thoughts at night by crying, talking to their husbands,
or to God, but not by crying in front of the patient or
family to avoid everything falling apart. One caregiver stated
She will always receive my optimism because that
is part of the treatment as well. This is nothing, I
have suffered much worse things; all we must do,
we must do with enthusiasm and optimism.

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

Wells et al. / Mexican American Cancer Family Caregivers 229

Suffering apart appeared to cause significant emotional work for the caregiver, but she accepted this to have
a positive self-image and sense of being a good caregiver.
Another caregiver stated that she was embarrassed
because at times she wanted to find someone to help her
and tell that person everything that she wanted to say.
However, the caregiver believed she could not do this
based on an obligation or duty to care for her loved one.
Looking to God. As a part of caregivers suffering
apart, they frequently spoke to and looked to God to
meet their emotional needs. Caregivers responded to the
gift God gave them by choosing them to become a caregiver, a perception that strengthened their connection to
God, their concept of personal strength, and their ability
to successfully provide care. Many caregivers asked God
to give them strength and patience to meet the needs of
the family member with cancer. One caregiver encouraged the patient by saying
I assure you that God is with us and He is not going
to leave us and look they [the health care workers]
are going to take good care of us.
The caregivers frequently voiced strengthening of
their faith during the cancer crisis and trusted God that
she [the caregiver] would come out ahead with Gods
help. The caregivers believed that God was the ultimate decision-maker on the patient progress and that
health care providers worked under Gods guidance.
Caregivers did not attend church regularly but reported
feeling supported by their faith during the cancer crisis.
Learning more. Caregivers found that the more they
learned about cancer and care resources, the better care they
could give. Learning more within the MA culture often
occurred through interpersonal communication because of
the strong MA oral tradition. For example, one caregiver
mentioned that she did not take time to read books but
went by what other lay people told her. The problem was
that she did not know whether that information was accurate. She said, Sometimes they could be making it up,
you know? In general, the amount of learning varied from,
I cant change anything because I dont know how to
I dont have to ask anymore [because now I know].
Caregivers desired more visual and reading materials
to increase their understanding of both the patient cancer
experience and relevant caregiving approaches. Topics of
particular interest for the caregiver were providing emotional support, medication administration, and meal
preparation when the patient experienced side effects of
cancer treatment.

Struggling: Hurting Too Much


Although caregivers desperately wanted to give good
care to their family member, factors interfered with their
full ability to do so. For example, one woman said she
had a hard time caring for her mother when she herself
was hurting too much. Although caregivers hurt too
much, they identified positive outcomes, such as becoming stronger, from their experience. Components of their
struggles were being uncertain, having no money, getting
sick, and needing an interpreter.
Being uncertain. When the caregivers could not predict the future, the disease progress or outcome, they felt
uncertainty that led to caregiver feelings of uneasiness
and mental anguish. One caregiver stated
We are always wondering what will happen tomorrow. We are always on alert. I thank God and want
to just accept it and live in peace but its like a terror, a real terror.
Negative consequences of being uncertain included
the family getting depressed when the doctor did not tell
the caregiver or family about the cancer and how to handle it, when promises to deliver health care services were
not kept, when there is no cure, or when they told us
she could die at any time. Caregiver uncertainty also
occurred when they watched the patient suffer from the
side effects of the cancer treatment: The way they cure
her is the toughest for me. Caregiver uncertainty also
contributed to a delay in obtaining needed palliative care
services for terminally patients.
Having no money. Having little money and/or insurance to pay for patient care or meet other caregiver needs
was a frequently expressed challenge. Family members
contributed extra money or offered live-in arrangements
to caregivers to help meet their daily living expenses.
Expenses escalated when the caregiver brought the
patient into her home to live. The increased electric, gas,
and water bills mandated less money for other family
needs. One caregiver reported
The caregiving is really impacting us. Like I take
off work, I dont get paid or anything, yet the
expenses increase.
Getting sick. Caregivers in the study demonstrated a
range of emotional and physical responses to caregiving.
Caregivers conveyed physical symptoms such as stomachaches, headaches, lack of restful sleep, inability to get
out of bed to provide care, and chest pain. Caregivers

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

230 Transcultural Nursing

agreed that they experienced getting sick when they worried a lot, (a) when the patient is very sick and has complicated care, (b) when the illness does not go away or
even gets worse, (c) when the patient had a reoccurrence of cancer, and (d) when caregivers could not maintain their desired daily routine.
Positive outcomes of getting sick included increased
caregiver awareness that their emotional response to
caregiving influenced their physical health. They noted
they needed to control themselves to prevent getting
sick because this would allow continued caregiving.
Yet, caregivers viewed symptoms as unassociated with
caregiver burden and did not change their lifestyle to
deal with caregiver stress. Motivation to take care of
themselves was based on the belief that they could take
better care of the patient if they stayed well. One
caregiver noted
If she [patient] is sick, I have to be well so that I
transmit only good things to her [patient]. It would
be so sad if both of us were ill, then who would take
care of her? I prefer to attend to her myself.
Needing an interpreter. Caregivers noted that the doctors inability to speak Spanish, lack of an interpreter,
receipt of late information about services that might help
the patient during treatment, and the lack of educational
materials in Spanish blocked their understanding of cancer and ways to effectively provide patient care. One
caregiver noted that she had to bring her daughter to
serve as an interpreter during clinic visits which was
even worse and another thing that makes you tense
because the daughter could lose her job with her
absences. Another caregiver noted
Sometimes you had to wait more time for the interpreter to come but, yes, if there wasnt an interpreter,
you couldnt understand anything.
Negative consequences of needing an interpreter
included the caregiver feeling nervous, tense, and experiencing suffering because they wondered how they would
help the patient, and not getting the patient into care
early. These barriers blocked understanding between the
doctor and caregivers and, in some cases, the patients.
Caregivers in this sample who experienced the most
struggles during caregiving also expressed more difficulty becoming stronger. It is possible that there are
other caregivers who experienced so many difficulties
that they stopped caregiving altogether and were no
longer attending the clinic where our data collection took

place. To fully explore the opposite or negative case of


the becoming stronger theoretical construct, we would
need to find and interview those women as well, something that was outside the scope of this study.

Support: Assistance to Strategize


or Barrier to Becoming Stronger
Feeling supported, as expressed by caregivers, came
predominantly and readily from the caregivers family.
Family members, both extended and nuclear, offered
money, child care, housing, and transportation that
helped with the practical needs of the caregiver and
patient. Emotional support included listening to the caregivers frustrations or accompanying the caregiver to the
clinic. Relatives living out of town called and sent money
on a regular basis.
Professionals also served as a source of informational
and emotional support in some cases. Caregivers generally
spoke highly of the clinics humanitarian care. One caregiver stated, Doctors and nurses are an important part of
our support. Caregivers stated their appreciation about
being called at home to confirm appointments or when
asked about the patients and the caregivers status.
Caregivers spoke of nurses who encouraged them to take
better care of themselves. Other private, nonprofit agencies provided sources of support, mostly through allocation of financial assistance to cover medication costs and
nutritional drink supplements. However, caregivers did
not generally choose to accept outside services the family
could provide such as transportation services, even though
this could have helped families with limited budgets.
A lack of support occurred when no geographically
close family members were available to give practical or
emotional support. Because many MAs in Texas are recent
immigrants, they have left the extended family behind in
their home country and have a smaller social network to
rely on. In some cases, the patient had difficulty finding
oncology care, if they were in the United States as undocumented immigrants, and without insurance. Anecdotal
stories included being told to return to Mexico for care
because they were undocumented. Other barriers to care,
when caregivers did not feel supported, included long waits
in the clinic for appointment times, the lack of Spanish
print material, and the lack of available interpreters. When
the patient had to provide the interpreter in order for care
to be given, it put a further strain on the family and was a
struggle rather than a support. Caregivers who experienced
feeling supported were best able to effectively strategize to
provide quality care. These caregivers most successfully
experienced becoming stronger.

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

Wells et al. / Mexican American Cancer Family Caregivers 231

Discussion
Despite limited education, these women used eloquent
language to express their strength and cultural obligation
to prioritize the patient during the cancer crisis. They
learned a great deal about themselves and cancer through
caregiving, which supports other research findings that
show family caregivers finding meaning in the cancer
experience. These experiences are found to cause transformation in life priorities and greater appreciation of
daily life (Jones, Zhang, & Meleis, 2003; Northouse,
Kershaw, Mood, & Schafenacker, 2005). Caregivers had
faced more serious events than cancer in the past, which
prepared them for assaulting the villain of cancer.
Overall good health of the caregiver, social support, especially from family to bolster caregiver commitment in her
work, and belief in the doctor and cancer treatment,
allowed caregivers to generally report rewards of caregiving. This was reported even in the face of a patients terminal illness or caregivers learning or financial struggles.
Caregivers frequently found it difficult to talk about
their own response to the caregiving experience, focusing instead on the family members response to the cancer. Perhaps this reflects the caregivers difficulty in
identifying self separate from the family within the MA
culture. By prioritizing the patient over herself, the caregiver had less time for self-care. Caregivers reported
feeling sadness and depression, emotions well described
in caregiver burden literature (Navaie-Waliser et al.,
2002; Nijboer et al., 2000). Consistent with studies that
found MA women tend to engage in less healthpreventive behaviors (Borrayo, Lawsin, & Coit, 2005;
Fernandez, Palmer, & Leong-Wu, 2005), few caregivers
changed their lifestyle to deal with caregiver stress.
Caregivers acknowledged their major role was meeting the ill family members need for encouragement,
even though their own personal emotional needs
received minimal attention as they suffered apart.
Cultural preservation of a family caregivers need to be
strong in front of her family is essential. Providing private one-on-one conversations with the caregiver to
assess her emotional and learning needs during health
care encounters offers confidential supportive assistance
in developing relevant health care interventions. The
caregivers in this study were relatively young women
(see Table 1) at a stage, where teaching about self-care
could reduce risk for future health problems that might
interrupt future family caregiving. Health care providers
might assist caregivers in further understanding the need
for self-care and ways to provide this care by organizing
caregiver education on this topic (Wells, Cagle, &
Bradley, 2006). MA caregivers may offer a challenge to

health teaching because this study indicated that caregivers believed they had good health and placed a lesser
priority on preventive or early care, perhaps because of
lack of a future orientation. This finding appears consistent with other studies (Borrayo et al., 2005; Dumonteil
& Lon, 2003; Fernandez et al., 2005).
Both spirituality and looking to God served as primary coping resources previously identified in many
studies that address the importance of religion and spirituality as sources of solace and hope in various ethnic
populations (Campesino & Schwartz, 2006; Juarez,
2003). Caregivers showed both strong spirituality (ones
intimate relationship with a universal being or consciousness; Reed, 1998; Vella-Brodrick & Allen, 1995)
and religiosity (behaviors such as praying and reading of
scripture; Pargament, Smith, Koenig, & Perez, 1998;
Strawbridge, Cohen, Shema, & Kaplan, 1997) but in
nonchurch settings. Caregivers may feel more supported
in their spiritual needs in cancer clinics that provide an
on-site prayer room and access to private pastoral care
during their long waits there.
No caregiver in this study identified caregiver burden
in their experience, although this outcome variable is often
identified in studies of caregivers who feel an imbalance
between caregiving challenges and reciprocity of support
(Saldaa, Dassori, & Miller, 1999). Only a very few
Spanish-speaking caregivers, with significant lack of
financial or family resources that made them unable to prioritize the ill family members care, reported that the negatives of caregiving exceeded the positives. Although
caregivers denied they experienced caregiver burden,
rephrasing questions addressing difficulties of caregiving
elicited responses that clearly reflected a phenomenon
defined by investigators as caregiver burden. Plausible
reasons for caregivers denial of burden may reflect inappropriateness of acknowledging caregiving burden when
one has a cultural obligation to care and absence of a word
in the Spanish language for this type of burden.
Caregivers also may find it difficult to conceptualize this
term, or they might not feel comfortable acknowledging
these feelings to interviewers during such short acquaintance (John & McMillian, 1998). More accurate information on MA caregiving and family stress may come from
assessment if terms such as suffering, hurts, or sadness experienced with caregiving are used. These terms
permit a culturally sanctioned context for discussions with
caregivers that can be followed by questions about individual factors that cause these negative responses.
Most (59%) caregivers in the United States continue to
work full-time or part-time outside the home, and 39%
report having no choice in becoming a caregiver
(National Alliance for Caregiving & American Association

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

232 Transcultural Nursing

of Retired Persons [AARP], 2004). One woman in


the study continued to work during caregiving and
expressed dismay that the quality of her work suffered
because of her preoccupation with her mothers cancer
struggles. Other caregivers who quit their jobs when they
assumed the role of caregiving noted that their family
member came first, and they could always return to work
later. Some caregivers found the loss of income and job
stimulation stressful.
The low-to-moderate acculturation range among participants may influence more perceived stress and need
for greater coping efforts among the Spanish-speaking
caregivers in the study (Jolicoeur & Madden, 2002;
Saldaa et al., 1999). Further long-term study, perhaps
with completion of sequential interviews during different
phases of the cancer trajectory (diagnosis, treatment,
recovery, or reoccurrence) or examination of caregiverpatient relationship, might reveal differences in caregiver
coping or needs. In that case, individualized primary and
secondary prevention interventions to support continuance of caregiving, an important cultural role for MA
women, are required. Further study is needed to more
fully understand the unique needs of caregivers who
appear to straddle both MA traditional beliefs and newer
American beliefs about caregiving or who live in urban
versus rural environments, factors that may cause caregiving stress and influence caregiver health (CoraBramble & Williams, 2000; Jolicoeur & Madden, 2002).
Health care providers attention to areas of highest caregiver interest for learning more (medications, meals, and
patient emotional support) would acknowledge a partnership with the caregiver in providing cancer care, foster
learning to decrease caregiver uncertainty in her role, and
assist the caregiver to prioritize the patients care. The
more-acculturated caregivers were motivated to help those
with unresolved language and literacy barriers to learn
more about patient care. Caregiver uncertainty and determination to fight the cancer by trusting the doctor and treatment often prevented caregivers from accepting palliative
services readily. Thus, some caregivers lacked learning
more, or receiving free, or low cost resources from social
services, a resource frequently used by other ethnic groups
with cancer who need information and help with financial
issues of care (Cagle, Appel, Skelly, & Carter-Edwards,
2002; Dilworth-Anderson, Williams, & Gibson, 2002).
The majority of study participants were Spanish-speaking
caregivers who had a particularly deep need for learning
more about where and how to access health care. Lack of
citizenship sometimes prevented access to services available to U.S. citizens even with significant support of clinic
staff. Study findings indicate a need for more research
on delivery of health care access information and testing

outcomes of caregiver education for those with limited


education levels. There is a vital role for trained interpreters with knowledge and sensitivity to address the distinct cultural needs of patients and families, particularly
those without U.S. citizenship, to facilitate positive care
outcomes to increasing numbers of patients and their
families seeking cancer care in U.S. clinics.

Conclusion
This study, rich in both depth and diversity of data, provided a valuable opportunity for 34 previously silent, low
educated women to share their wisdom about the positives
and negatives of caregiving, their perceptions of that role
on their health, and their emotional quest for quality care
and outcomes for their ill family member. Findings indicated that culture influenced the overall caregiving experience and informed culturally relevant interventions for
this group. Health care providers who are informed by this
caregiving experience and the MA caregivers integral role
to the patient access, receipt, and response to cancer care,
hold promise for changing current cancer patient care
approaches that improve MA family health.

References
American Cancer Society, Texas Division. (2006, September 13). A
closer look at cancer in US Hispanics/Latinos. ACS Press
Release, ACS Archives. Available from www.cancer.org
Ayalong, L. (2004). Cultural variants of caregiving on the culture of
caregiving. Journal of Cultural Diversity, 11, 131-138.
Borrayo, E. A., & Jenkins, S. R. (2001). Feeling healthy: So why
should Mexican American women screen for breast cancer?
Qualitative Health Research, 11, 812-823.
Borrayo, E. A., Lawsin, C., & Coit, C. (2005). Latinas appraisal of
participation in breast cancer prevention clinical trials. Cancer
Control: Journal of Moffitt Cancer Center, 12(Suppl. 2), 107-110.
Cagle, C. S., Appel, S., Skelly, A. H., & Carter-Edwards, L. (2002).
Mid-life African American women with type 2 diabetes: Influence of
work and the multicaregiver role. Ethnicity & Disease, 12, 555-566.
Campesino, M., & Schwartz, G. E. (2006). Spirituality among
Latinas/os: Implications of culture in conceptualization of measurement. Advances in Nursing Science, 29, 69-81.
Carrasquillo, O., Lantigua, R. A., & Shea, S. (2000). Differences in
functional status of Hispanic versus non-Hispanic White elders.
Journal of Aging and Health, 12, 342-361.
Cora-Bramble, D., & Williams, L. (2000). Explaining illness to
Latinos: Cultural foundations and messages. In B. B. Whaley
(Ed.), Explaining illness: Research, theory, and strategies
(pp. 259-281). Mahwah, NJ: Lawrence Erlbaum.
Crist, J. D., Garcia-Smith, D., & Phillips, L. R. (2006).
Accommodating the stranger en casa: How Mexican American
elders and caregivers decide to use formal care. Research and
Theory in Nursing Practice, 20, 109-206.
Crist, J. D., Velaquez, H., Durnan, I., & Figueroa, D. R. (2006).
Instrument development of the confidence in home care services

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016

Wells et al. / Mexican American Cancer Family Caregivers 233


questionnaire for use with elders and caregivers of Mexican
descent. Public Health Nursing, 23, 284-291.
Dilworth-Anderson, P., Williams, I., & Gibson, B. (2002). Issues of
race, ethnicity, and culture in caregiving research: A 20-year
review (1980-2000). The Gerontologist, 42, 237-272.
Dumonteil, E., & Lon, M. R. G. (2003). Mexico (United Mexican
States). In C. D. DAvanzo & E. M. Geissler (Eds.), Pocket guide
to cultural health assessment (3rd ed., pp. 520-525). St. Louis,
MO: Mosby.
Emden, C., & Sandelowski, M. (1999). The good, the bad and relative, part two: Goodness and the criterion problem in qualitative
research. International Journal of Professional Nursing Practice,
5(1), 2-7.
Fernandez, M. E., Palmer, R. C., & Leong-Wu, C. A. (2005). Repeat
mammography screening among low-income and minority
women: A qualitative study. Cancer Control: Journal of the
Moffitt Cancer Center, 12(Suppl. 2), 77-83.
Glaser, B. (1992). Basics of grounded theory analysis: Emergence
versus forcing. Mill Valley, CA: Sociology Press.
John, R., & McMillian, B. (1998). Exploring caregiver burden among
Mexican Americans: Cultural prescriptions, family dilemmas.
Journal of Aging and Ethnicity, 1, 93-111.
Jolicoeur, P. M., & Madden, T. (2002). The good daughters:
Acculturation and caregiving among Mexican-American women.
Journal of Aging Studies, 16, 107-120.
Jones, P., Zhang, X. E., & Meleis, A. I. (2003). Transforming vulnerability. Western Journal of Nursing Research, 25, 835-853.
Juarez, G. (2003). Perceptions of the caregiving experience and quality of life: Mexican/Mexican American caregivers providing care
to adults with advanced cancer. Dissertation Abstracts International,
64, 11B, p. 5449. (UMI No. AA13112755)
Lincoln, Y. S., & Guba, E. (1985). Naturalistic inquiry. Beverly Hills,
CA: Sage.
Marin, G., Sabogal, F., Marin, B. V., Otero-Sabogal, R., &
Perez-Stable, E. J. (1987). Development of a short acculturation
scale for Hispanics. Hispanic Journal of Behavioral Sciences, 9,
183-205.
Mendelson, C. (2002). Health perceptions of Mexican American
women. Journal of Transcultural Nursing, 13, 210-217.
National Alliance for Caregiving & American Association of Retired
Persons. (2004). Caregiving in the U.S. Retrieved May 23, 2005,
from http://www.caregiving.org/data/04finalreport.pdf
Navaie-Waliser, M., Feldman, P., Gould, D., Levine, C., Kuerbis, A., &
Donelan, K. (2002). When the caregiver needs care: The plight
of vulnerable caregivers. American Journal of Public Health, 92,
409-413.

Nijboer, C., Triemstra, M., Tempelaar, R., Mulder, M., Sanderman, R.,
& Van den Bos, G. A. (2000). Patterns of caregiver experiences
among partners of cancer patients. The Gerontologist, 40, 738-746.
Northouse, L., Kershaw, T., Mood, D., & Schafenacker, A. (2005).
Effects of a family intervention on the quality of life of women
with recurrent breast cancer and their family caregivers. PsychoOncology, 14, 478-491.
Pargament, K., Smith, B., Koenig, H., & Perez, L. (1998). Patterns of
positive and negative religious coping with major life stressors.
Journal of Scientific Study of Religion, 37, 710-724.
Phillips, L. R., Torres de Ardon, E., Komnenich, P., Killeen, M., &
Rusinak, R. (2000). The Mexican American caregiving experience. Hispanic Journal of Behavioral Sciences, 22, 296-313.
QRS International. (2005). NVivo (Version 2.0) [Computer software].
Markhan, ON: Author.
Reed, P. (1998). The re-enchantment of health care: A paradigm
of spirituality. In M. Cobb & V. Robshaw (Eds.), The spiritual challenges of healthcare (pp. 35-55). New York: Churchill Livingstone.
Saldaa, D. H., Dassori, A. M., & Miller, A. L. (1999). When is caregiving a burden? Listening to Mexican American women.
Hispanic Journal of Behavioral Sciences, 21, 283-301.
Speziale, H. J., & Carpenter, D. R. (2003). Designing data generation and
management strategies. In H. J. Speziale & D. R. Carpenter (Eds.),
Qualitative research in nursing: Advancing the humanistic imperative (pp. 27-42). Philadelphia: Lippincott, Williams, & Wilkins.
Stern, P. N. (1980). Grounded theory methodology: Its uses and
processes. Image, 12(1), 20-23.
Stern, P. N., Allen, L. M., & Moxley, P. A. (1982). The nurse as
grounded theorist: History, processes, and uses. Review Journal of
Philosophy and Social Science, 7, 200-215.
Strauss, A. (1987). Qualitative analysis for social scientists.
Cambridge, UK: University of Cambridge Press.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research (2nd
ed.). Thousand Oaks, CA: Sage.
Strawbridge, W. J., Cohen, R. D., Shema, S. J., & Kaplan, G. A.
(1997). Frequent attendance at religious services and mortality
over 78 years. American Journal of Public Health, 87, 957-961.
U.S. Census Bureau. (2006, August 4). Census Bureau releases population estimates by race, Hispanic origin and age for states and counties (Table 1). Washington, DC: U.S. Census Bureau News, U.S.
Department of Commerce. Available from www. census.gov
Vella-Brodrick, D. A., & Allen, F. C. (1995). Development and psychometric validation of the mental, physical, and spiritual wellbeing scale. Psychology Representative, 77, 659-674.
Wells, J. N., Cagle, C., & Bradley, P. (2006). Building on MexicanAmerican cultural values. Nursing 2006, 36(7), 20-21.

Downloaded from tcn.sagepub.com at UKM Medical Centre on March 17, 2016