Professional Documents
Culture Documents
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:
223
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.
Figure 1
Qualitative Data Analysis Path.
Investigators Journaling began process
Journaling continued
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
Journaling continued
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
Table 1
Descriptive Demographic Data: Mexican American Family Caregivers
Variable
Marital status
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
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
Figure 2
Mexican American Family Caregiver Experience: Becoming Stronger.
Becoming Stronger
Feeling
Supported
Lacking
Support
Strategizing:
Struggling:
Providing Care
Life Restructuring
Tough, scary
illness
Duty to family
Belief in God
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).
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.
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
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
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.
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