Citation
Treatment experiences of underserved Latina patients with breast cancer

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Title:
Treatment experiences of underserved Latina patients with breast cancer
Creator:
Nguyen, Jennifer Thuy ( author )
Language:
English
Physical Description:
1 electronic file (94 pages). : ;

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Subjects / Keywords:
Hispanic American women -- Health and hygiene ( lcsh )
Breast -- Cancer -- Psychological aspects ( lcsh )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Abstract:
Little is known about how underserved Spanish-speaking Latina breast cancer (BC) patients experience treatment and how these experiences affect patients’ treatment adherence and related outcomes. This study explored how underserved Latina BC patients experienced their treatments despite having multiple social disadvantages. Seven BC patients and seven healthcare providers involved with the care of BC patients were interviewed to better understand these patients’ treatment experiences and the personal and system barriers that affects their care. Data was analyzed using ethnographic content analysis. Patients described their personal journeys from diagnosis through treatment, including their treatment decisions, logistical barriers, and personal barriers and concerns that negatively affected their experience. However, they also discussed the support they received from their family and the resources and services they were provided at their treatment facility, and how these contributed to a more positive treatment experience. Healthcare providers described access barriers, language barriers, system issues, and the lack of resources, as negative factors that contribute to patient experiences, but they also discussed their role as well as the patient factors that seemed to help create a positive experience for patients. Overall, patients were generally satisfied with the care that they received despite needing to overcome multiple barriers. Healthcare providers, on the other hand, described patient experiences as a rollercoaster as patients go through their treatment journeys. Patients and providers discussed many similar topics with patients focusing more on their personal strengths and providers focusing on access and treatment barriers. Future studies should explore how the treatment experiences of patients can influence treatment adherence directly as well as incorporate mechanisms focused on helping patients overcome treatment barriers and addressing patient characteristics in order to improve BC patient’s treatment experiences and outcomes.
Thesis:
Thesis (M.A.)--University of Colorado Denver.
Bibliography:
Includes bibliographic references
System Details:
System requirements: Adobe Reader.
General Note:
Department of Psychology
Statement of Responsibility:
by Jennifer Thuy Nguyen.

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Source Institution:
University of Colorado Denver
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Auraria Library
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All applicable rights reserved by the source institution and holding location.
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952033445 ( OCLC )
ocn952033445

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Full Text
TREATMENT EXPERIENCES OF UNDERSERVED LATINA PATIENTS
WITH BREAST CANCER
by
JENNIFER THUY NGUYEN
B.A., University of Colorado Denver, 2009
A thesis submitted to the
Faculty of the Graduate School of the
University of Colorado in partial fulfillment
of the requirements for the degree of
Master of Arts
Clinical Health Psychology
2016


11
This thesis for the Master of Arts degree by
Jennifer Thuy Nguyen
has been approved for the
Clinical Health Psychology Program
by
Kristin Kilboum, Chair
Evelinn Borrayo, Advisor
Paula Espinoza
December 18th, 2015


Ill
Nguyen, Jennifer Thuy (M.A., Clinical Health Psychology)
AYUDA: Acceptability and Feasibility of a Psychoeducational and Psychosocial Support
Program for Spanish-Speaking Latinas with Breast Cancer
Thesis directed by Professor Evelinn Borrayo.
ABSTRACT
Little is known about how underserved Spanish-speaking Latina breast cancer (BC)
patients experience treatment and how these experiences affect patients treatment adherence and
related outcomes. This study explored how underserved Latina BC patients experienced their
treatments despite having multiple social disadvantages. Seven BC patients and seven healthcare
providers involved with the care of BC patients were interviewed to better understand these
patients treatment experiences and the personal and system barriers that affects their care. Data
was analyzed using ethnographic content analysis. Patients described their personal journeys
from diagnosis through treatment, including their treatment decisions, logistical barriers, and
personal barriers and concerns that negatively affected their experience. However, they also
discussed the support they received from their family and the resources and services they were
provided at their treatment facility, and how these contributed to a more positive treatment
experience. Healthcare providers described access barriers, language barriers, system issues, and
the lack of resources, as negative factors that contribute to patient experiences, but they also
discussed their role as well as the patient factors that seemed to help create a positive experience
for patients. Overall, patients were generally satisfied with the care that they received despite
needing to overcome multiple barriers. Healthcare providers, on the other hand, described
patient experiences as a rollercoaster as patients go through their treatment journeys. Patients
and providers discussed many similar topics with patients focusing more on their personal
strengths and providers focusing on access and treatment barriers. Future studies should explore


iv
how the treatment experiences of patients can influence treatment adherence directly as well as
incorporate mechanisms focused on helping patients overcome treatment barriers and addressing
patient characteristics in order to improve BC patients treatment experiences and outcomes.
The form and content of this abstract are approved. I recommend its publication.
Approved: Evelinn Borrayo


V
TABLE OF CONTENTS
CHAPTER
I. INTRODUCTION..........................................................1
Breast Cancer Disparities among Underserved Latinas...................2
Access to Care, Socioeconomic Status, and Language....................3
Cultural & Gender Factors.............................................8
Additional Factors that Affect the Treatment Experience..............10
Patient-Provider Relationship........................................11
Treatment Experience.................................................14
II. SUMMARY AND RESEARCH QUESTIONS.......................................17
III. METHODS..............................................................19
Participants.........................................................19
Key Informants...................................................19
Patients.........................................................20
Procedures...........................................................20
IV. ANALYSIS.............................................................22
V. RESULTS..............................................................23
Research Question 1..................................................23
Treatment Options and Treatment Delays...........................25
Family Involvement...............................................28
Treatment Side Effects and Provider Recommendations..............30
Complementary Treatments.........................................33
Research Question 2..................................................34
Language, Education, Literacy, and Health Literacy...............35


VI
Cultural Health Beliefs and Behavioral Norms.........................37
Psychological Concerns...............................................40
Coping Methods.......................................................44
Treatment Barriers...................................................48
Transportation, Insurance, and Access..........................49
Competing Responsibilities.....................................50
Religious Beliefs and Norms....................................52
Research Question 3......................................................53
Healthcare Provider Roles............................................53
Healthcare Provider Communication....................................55
Patient Navigator Roles..............................................58
Logistic Concerns....................................................59
VI. DISCUSSION...............................................................62
Limitations..............................................................72
Contributions and Future Directions..................................... 72
REFERENCES.........................................................................74
APPENDIX
A. KI and Patient Interviews...................................................81
B. Patient Socio-demographic Questionnaire.....................................85
C. Key Informant Socio-demographic Questionnaire...............................87
D. Patient Navigator Socio-demographic Questionnaire...........................88


CHAPTERI
INTRODUCTION
Since the National Cancer Act was signed in 1971, significant progress has been made to
increase cancer treatment rates and improve cancer patient survival rates, but decades later,
cancer is still a leading cause of death within the United States. In 1999, a groundbreaking
report by the Institute of Medicine on the quality of cancer care in the United States described a
wide gap between what could be construed as ideal and the reality of what patients actually
experience with cancer (Seils & Schulman, 2003). A decade later, the Cancer Treatment Centers
of America completed a survey that demonstrated similar findings showing a significant gap
between the expectations that patients have for treatment and what they actually received
(Cancer Treatment Centers of America, 2013). Even with the progress made in cancer treatment
over the last few decades, not all groups benefit from the medical advances. The National
Institute of Cancer (2008) reported that certain groups in the country suffer disproportionately
from cancer and its associated effects, including premature death. Multiple complex and
interrelated factors contribute to the disparity in cancer treatment benefits among underserved
groups, with lack of healthcare coverage and low socioeconomic status as being the most
pervasive factors (National Institute of Cancer, 2008). It is concerning that even though the
effects of these factors on cancer disparities are well understood, very little progress has been
made to improve the participation and cancer treatment success rates for underserved patients
and very little is known about their expectations and experiences when they are able to
participate in cancer treatment.


2
Breast Cancer Disparities among Underserved Latinas
A group that is particularly underserved is low-income Spanish-speaking Latinas with
breast cancer. Breast cancer is the most common cancer in women, no matter what race or
ethnicity women are (Centers for Disease Control and Prevention [CDC], 2014). In 2014,
232,670 new cases of invasive breast cancer will be diagnosed in women and 40,000 women will
die from breast cancer (American Cancer Society [ACS], 2014). Among Hispanic (Latina)
women, breast cancer is the most common cause of cancer death, even though Latinas have
lower breast cancer rates when compared to non-Hispanic white women (CDC, 2014; Susan G.
Komen, 2014). Additionally, it is important to note that the incidence rates for breast cancer in
Latinas are higher for women under the age 40 (Ashing-Giwa, Padilla, Bohorquez, Tejero, &
Garcia, 2006). Across multiple studies, Latina breast cancer patients also tended to present with
more advanced disease, more adverse prognosis, higher risk of mortality, and they seem to be
diagnosed at a younger age than white women (Dehal, Abbas, & Johna, 2013; Katz et al., 2005;
U.S. Department of Health and Human Services (HHS), 2010). Although the overall mortality
rate for breast cancer has decreased, the mortality rate for Latinas has not decreased as much as
for non-Hispanic women (Ashing-Giwa et al., 2006).
Latinas also have a poorer prognosis for survival rates when compared to their white
counterparts (Susan G. Komen, 2013). Across the nation, Latinas have an 83% five-year breast
cancer survival rate while non-Hispanic White females have a five-year breast cancer survival
rate of 88% (ACS, 2012). Furthermore, Latinas are more likely than non-Latina white women to
receive a first course of treatment that does not meet the 2000 National Comprehensive Cancer
Network Standards (Li, Malone, & Daling, 2003). Many factors contribute to the cancer
disparities that affect Latinas, but little is known about how these factors influence patients


3
subjective experiences during treatment and how such experiences affect disparities in treatment
completion and related outcomes (e.g., more advanced stage, lower 5-year survival, and greater
risk of death). By exploring how various factors influence the subjective experiences of
underserved Latinas undergoing breast cancer treatment, future interventions can be tailored to
address such factors in order to improve Latinas treatment completion and related outcomes. A
review of the literature follows to understand the current state of knowledge regarding the social
determinants of cancer treatment disparities that affect medically underserved (i.e., uninsured,
underinsured, low-income) Latinas in the United States.
Access to Care, Socioeconomic Status, and Language
The cancer treatment disparities that low-income Spanish-speaking Latinas encounter can
be attributed to multiple factors that include barriers to healthcare, low socioeconomic status, and
socio-cultural disadvantages. Access to healthcare, which is often associated with lack of
insurance and low income, is often one of the major factors that is related to the racial and ethnic
differences in access to breast cancer treatment (Susan G. Komen, 2013). Hispanics (Latinos)
have the highest uninsured rates of racial or ethnic group within the United States (HHS, 2014).
As the number of Latinos increase within the nation, so does the number of uninsured individuals
(Doty, 2003). Two out of five Hispanic adults ages 19-64 were uninsured in 2000, as compared
with 14% of whites (Doty, 2003). The HHS, Office of Minority Health (2014), reported that in
2012, 29% of the Hispanic population was not covered by health insurance as compared to
10.4% of non-Hispanic whites. Immigration status is likely associated with the low rates of
health coverage reported within the Hispanic population (Doty, 2003). Other treatment barriers
among Latina breast cancer patients include citizenship status. In 2014, there were 11.3 million
undocumented immigrants in the U.S. with Mexicans making up about half of that population


4
and only making 5.1% of the U.S. labor force (Krogstad & Passel, 2015). A large number of
Latinas are undocumented immigrants who are either unemployed or low-wage employed,
making them ineligible for health insurance (Ashing-Giwa et al., 2006). The lack of healthcare
access can hinder Latinas access to breast cancer diagnostic and treatment services, therefore
widening the disparities that this population suffers related to morbidity and mortality outcomes.
Furthermore, even though the Affordable Care Act has opened opportunities for many
underserved populations in the U.S. to gain access to care, some underserved groups still
struggle with getting access to care. This may be due to lack of information about the Affordable
Care Act, or lack of resources to help them get insurance such as a lack of internet access, or
undocumented immigration status that disqualifies them. According to the Commonwealth Fund
Affordable Care Act Tracking Survey, the rate of uninsured populations such as Latinos
remained high in states that had not expanded their Medicaid program. The rate was statistically
unchanged, particularly for many states where large numbers of Latinos reside (Doty,
Rasmussen, & Collins, 2014). In addition, the survey noted that 30% of Latinos who speak
primarily Spanish remained uninsured as compared to 19% of English-dominant Latinos.
Among Latinos who were eligible for insurance, only 50% of Latinos were aware of the
marketplace, only 29% visited the marketplace, and the rates were even lower for Spanish-
speaking Latinos (Doty, Blumenthal, & Collins, 2014). Without proper health insurance, it is
more likely that underserved Latinas will continue to experience delays in breast cancer
diagnosis, treatment and follow-up (Smith, Ziogas, & Anton-Culver, 2013). Delays in treatment
results in adverse outcomes for breast cancer patients such as more advanced stage, lower 5-year
survival, and greater risk of death (Forbes, Warburton, Richards, & Ramirez, 2014; Jung et al.,
2011; McLaughlin et al., 2012; Smith et al., 2013).


5
Similar to getting insurance to access healthcare, income plays a role in patients access
to such care. The 2012 U.S. Census Bureau showed that 25.4 percent of Hispanics in
comparison to 11 percent of non-Hispanic Whites were living at the poverty level (DeNavas-
Walt, Proctor, & Smith, 2013; HHS, 2014). Unfortunately, even when they have health
insurance, low income individuals may not be able to pay out of pocket expenses for additional
care (Escarce & Kapur, 2006). According to the Agency for Healthcare Research and Quality
(AHRQ) (2011), among low-income Latinos, the uninsured incur lower healthcare expenses but
pay more total dollars out-of-pocket. They also noted that while many Latinos are employed,
they are not necessarily employed in situations where they can receive insurance for them and
for their families. Without adequate income, many individuals will not be able to pay out of
pocket for treatments and will feel the financial burden as they make treatment decisions. Some
individuals will not go to a hospital unless they are having acute medical concerns because they
cannot afford to pay for regular care (Escarce & Kapur, 2006; Kingsley & Bandolin, 2011;
Nedjat-Haiem, Carrion, Ell, & Palinkas, 2012). By doing so, they may prolong their disease and
in the case of breast cancer, their cancer may not be detected until the disease has progressed as
they may not be getting mammography screenings early enough to detect the cancer (Kingsley &
Bandolin, 2011; Susan G. Komen, 2015). Additionally, research has suggested that some
Latinas are likely to delay seeking medical attention even after detecting abnormalities in their
screenings because they fear the possibility of getting diagnosed with cancer and the medical
costs for seeking medical assistance, which would also further their delay in treatment. Due to
their economic strains and worries, the individuals quality of life would likely decrease (Nedjat-
Haiem, Lorenz, Ell, Hamilton, & Palinkas, 2012).


6
Underserved status also includes low education. Poor educational attainment is
considered an additional obstacle to Latinos receiving timely and appropriate healthcare. Low
education may impair peoples ability to navigate the complex healthcare delivery system,
communicate with healthcare providers, and understand providers instructions (Escarce &
Kapur, 2006). Due to low education, some individuals may not be able to make well-informed
treatment decisions and may also not understand what is occurring to them while in they are in
treatment. With the lack of understanding about their treatment and consequent inability to make
medical decisions, patients may experience their treatment differently and may rate their
satisfaction of the services differently compared to patients who have a better understanding of
their cancer treatment. They may also have a poorer quality of life and treatment adherence if
they do not understand their health status or information given to them during their treatment.
An example of this was found in one study done by Maly, Liu, Leake, Thind, and Diamant
(2010). The researchers found that women with higher educational levels were less likely to
experience nausea than those with lower educational levels. They suspected that women with
more education may have had more resources to obtain information on preventing and treating
nausea. Thus, low education and lack of insurance coupled with lack of understanding about
their cancer treatment significantly influence poorer outcomes for Latino patients within a
complex healthcare system.
Another common burden that affects some Latinos treatment access is limited English
proficiency. About 33% of the U. S. Latino population reports that they are not fluent in English
and 74% of U.S. Latinos speak a language other than English at home (HHS, 2014). Those who
primarily speak Spanish have more difficulty getting access to care, resources, and programs that
can help them through their treatment (Buki, Garces, Hinestrosa, Kogan, Carrillo, & French,


7
2008). The difficulty with language may lead Spanish-speaking Latinos to have more problems
communicating with their doctors (Doty, 2003), which may then lead to patients having less
confidence and trust in their doctors as compared with less than a third of uninsured English-
speaking whites. Moreover, Spanish-speaking Latinos have more difficulty comprehending
written prescription instructions and health information that they receive from the doctors
offices, which could ultimately affect their satisfaction with their care as well as their ability to
adhere to their treatment (Doty, 2003). Many Spanish-speaking women would not be able to
speak directly to their providers without a translator, which would limit their ability to ask
questions and voice their concerns (Sheppard et al., 2008). Multiple studies have found that
language barriers between providers and their patients cause providers to order excessive
medical tests and cause patients to have a decreased use of primary care and increased use of
emergency care without adequate follow-up (Escarce & Kapur, 2006). Additionally, Spanish-
speaking Latinas tend to receive different treatments and to perceive their treatment experience
very differently than did other cultural groups. Latinas who preferred Spanish were more likely
to experience a delay of 3 months or more from diagnosis to surgical treatment (Katz et al.,
2005). For primarily Spanish-speaking patients, language barriers can be a frustrating aspect in
their care. When patients command of English is low they cannot communicate properly with
their providers, understand results and medical instructions in English, or access available
resources. The process could cause much frustration resulting in lower satisfaction in their care
and affect their treatment decisions (Molina et al., 2014). In summary, language has a direct link
to access of care, which as noted earlier, Spanish-speaking individuals tend to have more
difficulty getting into the healthcare system which would thus delay their preventative


8
screenings, diagnoses, and treatments. They also tend to receive different treatment and perceive
their care differently when they prefer to speak Spanish.
Cultural & Gender Factors
Cultural factors should also be considered when understanding barriers to cancer
treatment among underserved ethnic minority populations (Ashing-Giwa et al., 2006; Buki et al.,
2008; Katz et al., 2005; Lopez-Class et al., 2011). Although many studies discuss the
importance of addressing cultural barriers, there is a shortage of literature on how cultural
barriers affect medically underserved Latinas access and experience with cancer treatment.
Cultural factors affect patients even before their treatment journey begins and it also serves as a
guiding script for treatment decisions. Cultural beliefs influence the way that patients appraise
their cancer diagnosis (Buki et al., 2008) and shape the healthcare treatment that Latinas
experience (Katz et al., 2005). Similarly, socio-cultural values and norms influence Latinas
treatment decisions and adherence. Cultural values that appear particularly relevant include:
respecto (respect), familismo (family-centeredness), marianismo (high value of being dedicated
wives and mothers), simpatia (formal friendliness or kindness), fatalismo (fatalism), and
dignidad (dignity) (Ramirez et al., 2014).
A couple of examples that cultural factors play a role in patients perceived treatment
experience include the belief in fatalism and modesty. Among some Hispanic/Latina women,
fatalism plays a role in viewing cancer as a death sentence. If the cancer is believed as meant
to be, early detection screening is of little value (Simon, 2006). That belief can potentially
affect when the patient would get diagnosed and what treatment options they would have. It may
even affect their treatment adherence if they have the belief that cancer is a death sentence.
Another example is the common belief that the touching of the breast is reserved for intimate


9
partners, thus having a male doctor touching their breasts may concern some Hispanic/Latina
women (Simon, 2006). Again, this belief may lead women to have poorer experience during
their screenings or treatment for their breast and may lead them to not feel comfortable for
follow-up visits. These examples show a glimpse of how cultural factors may play a role in
breast cancer treatment and how not addressing these factors could lead to poor treatment
adherence and poor experience for patients. Although these factors are noted and recognized
more and more as providers attempt to be more culturally sensitive, the complete role of cultural
beliefs in the treatment process of breast cancer is still poorly understood.
Gender identity and role also appear to be factors likely to influence Latinas treatment
adherence. The top two issues that are discussed most often in the literature is the role change
that many women endure when they are receiving cancer care and the importance of their female
organs (Kingsley & Bandolin, 2011). During cancer treatment, many women in the Latino
culture will experience a role change which means they go from being a caregiver to a care
receiver. The role reversal would typically require the patients spouse or children to care for
them rather than them providing care which may create stress and strain on the patient and their
family members (Kingsley & Bandolin, 2011). This role reversal in turn plays a role in how
women decide their course of treatment and affects how they adhere to such treatment. Some
women may feel uncomfortable receiving care and may struggle to make decisions, particularly
if those decisions will likely interfere with their family responsibilities. In one study, breast
cancer survivors viewed the gender role reversal as a painful experience just as much as
receiving cancer treatment (Collins, Villagran, & Sparks, 2008). In addition, it is also common
for many Latinas to not follow-up with their treatment regimens when they perceive their role
change affecting their ability to function and fulfill family duties (Kingsley & Bandolin, 2011).


10
The possibility of losing their breasts is also another concern that worries Latina women.
Latinas tend to experience a variety of negative emotions over losing their breasts, as these
represent to them their ability to fulfill their role as a mother and their identity as a woman
(Ashing-Giwa et al., 2006; Kingsley & Bandolin, 2011). The topic of body image not only can
influence treatment decisions, it is also something that many women have to discuss and
experience changes in during their course of treatment. In a study done by Ashing-Giwa et al.
(2006), breast cancer survivors expressed feelings of sadness, embarrassment, and frustration
about the changes breast cancer treatment brings about on their bodies. Many of the women felt
that they were not complete women because a breast is part of the womans body and the
removal of a breast/s means a missing limb (Ashing-Giwa et al., 2006). This change in their
bodies may lead them to feel uncomfortable with sexual intimacy with their partners and cause
them to fear that their partners will leave them if their breasts are missing (Kingsley & Bandolin,
2011). Similar to cultural beliefs, if gender identity and gender roles are not addressed,
individuals may not adhere to treatment recommendations if their identities and roles change
because of it. Without discussing how their bodies may change and how their partners may feel
about their new roles and bodies, Spanish-speaking Latinas may potentially experience
depression and/or anxiety which may also lead them to perceive a poor cancer experience.
Additional Factors that Affect the Treatment Experience
Work, transportation, and childcare are also aspects that can affect treatment disparities
among underserved cancer patients. For many working Latinos, particularly low-income, it is
difficult to take time off of work to go to a doctor unless they are experiencing acute pain.
Concerns regarding income loss and medical bills play a large role in delaying underserved
patients diagnoses and treatment for their health problems. For many, transportation is another


11
factor that delays the process of getting treatment. Unless the patients have Medicaid,
economically disadvantaged patients cannot get assistance with transportation to their doctors
appointments. Furthermore, some may find taking a bus to appointments difficult due to feeling
ill, which in turn also affects them getting adequate care (Kingsley & Bandolin, 2011). Finally,
lack of alternative childcare/eldercare is a large factor that deters underserved patients from
seeking and continuing treatment. Many low-income Latinas, for example, cannot afford or find
childcare when they are undergoing treatment.
The healthcare system and patient-provider relationships could also affect cancer
treatment disparities. Institutional barriers also influence access to care and a patients ability to
complete treatment. For example, certain cancer treatment sites may not have adequate Spanish-
speaking providers that can communicate well with their Latina patients or do not have other
resources such as support groups that are linguistically appropriate (Ashing-Giwa et al., 2006).
Latina cancer patients are receiving inadequate services due to language barriers. Limited
communication skills and understanding of Hispanic culture by providers may also create
barriers to care and patient dissatisfaction with the treatment that they receive (Katz et al., 2005).
Thus, it is of utmost importance to understand the roles that medical providers play, the barriers
that they encounter, and their influences on patients during the patients treatment journeys.
Patient-Provider Relationship
Providers play an important role in patient care and how patients perceive their quality of
care. When patients receive a diagnosis of cancer, they may have feelings of uncertainty and
loss of control over their life that may produce negative influences on their health outcomes and
quality of life (Arora, 2003). Most patients look to their providers to provide information and
support as they go through their cancer journey. If their provider could successfully address their


12
needs and concerns, then they are likely to have reduced disruption in their quality of life (Arora,
2003; Arora, Finney Rutten, Gustafson, Moser & Hawkins, 2007). In multiple studies, physician
behavior in terms of how well they communicate is the key to helping patients have better patient
outcomes. Studies have shown that by offering patients a choice in their treatment, patients tend
to have improved physical functioning, reduced anxiety and depression, higher quality of life,
and better psychological adjustment at post-visit follow-ups (Arora, 2003; Butow, Maclean,
Dunn, Tattersall, & Boyer, 1997; Fallowfield, Hall, Maguire, Baum, & AHem, 1994). Among
Latina breast cancer patients, when their providers do not effectively communicate with them,
they are more likely to report dissatisfaction and regret with their treatment decisions than Non-
Latina White patients (Hawley et al., 2008). In addition, Bakker, Fitch, Gray, Reed, and Bennet
(2001) noted that communication is important to both the process and outcome of cancer care.
They emphasized that while communication is important throughout the entire cancer
experience, it is especially important during the treatment phase. An ongoing exchange and
assertiveness were identified as helpful factors in communication between providers and
patients. However, because participants had only completed or had partial post-secondary
education, they suggested that education level may impact how healthcare professionals
communicate with their patients. Evidence exists that physicians are less informative to patients
who have lower education and income levels (Bakker et al., 2001).
In general, multiple studies have emphasized the challenges in patient-physician
communication. McWilliam, Brown, and Stewart (2000) included the following challenges that
need to be considered: the range of emotions patients experience when they are diagnosed, the
troubles of communicating negative news and how to provide hope in such moments, and how to
provide realistic reassurance in a timely manner for each individual need. Following the


13
diagnostic appointment, patients were also more apt to share information when positive
interactions occur between them and their healthcare providers. They also reported that the
positive relationship influenced their experience of the illness more positively, as well
(McWilliam et al., 2000). In general, Latinas seem to respond well when providers use empathy
and emphatic communication, which seems conducive to patient satisfaction (Molina et al.,
2014).
Similar to positive experiences, negative experiences could also affect how an individual
would evaluate their treatment quality. One study noted that patient-provider interactions were
hindered when women felt that physicians were uncaring or disrespectful of their culture. This
interaction is concerning and could affect how patients perceive their experience especially since
most of the low-income minority participants rated physician compassion as an important factor
for a strong patient-provider relationship (Sheppard et al., 2008). Other studies have also
reflected similar issues. Immigrant women have more trouble obtaining quality care and
experience more problems with their providers leading to patients viewing their providers as
disrespectful. Negative interactions or negative perceptions of their providers lead patients to be
fearful and apprehensive about accessing care (Nedjat-Haiem, Carrion, et al., 2012). The women
in the latter study expressed disappointment in some of their physicians as they felt rushed
during their appointments, thought their providers did not provide them with enough attention,
and felt that there was a lack of personal contact as they had different physicians seeing them.
Some of these issues led patients to feel distrust and distance between them and their providers
and would thus not ask questions or voice their concerns (Nedjat-Haiem, Carrion, et al., 2012).
The majority of the women in that particular study were from underserved backgrounds and was
looking to their provider for direction and guidance through the process (Nedjat-Haiem, Carrion,


14
et al., 2012). That situation is not uncommon for patients of ethnic minority backgrounds. In
more traditional cultures, providers are viewed as high status individuals who are to be revered
and are hardly questioned. To question them may seem to be insulting (Kingsley & Bandolin,
2011). Thus, if patients have more traditional cultural beliefs, they may have a different
experience with providers. In turn, providers who do not understand the sociocultural and
economic factors that these patients experience may stereotype patients during clinical
encounters which may worsen the quality of care that patients receive (Betancourt, Maina, &
Cervantes, 2011).
Treatment Experience
Little is known about how access to care, low socio-economic status, and cultural factors
influence the subjective experience that Latina breast cancer patients have when undergoing
breast cancer treatment. In part, this is due to the lack of research with medically underserved
Latino populations in general. In particular, Latino patients have been underrepresented in
quality of care and outcome studies despite the increased numbers of Latino cancer patients
undergoing treatment. Very few, if any, large scale breast cancer treatment studies have had
sufficient representation to be able to understand the quality of care that underserved Latina
breast cancer patients receive (Hamilton et al., 2009). However, what is evident in the literature
is that there are many layers of treatment considerations that underserved Latinas have to go
through. As previously reviewed, what is noted in most literature is that medically underserved
Latinas have multiple barriers to overcome prior to and during their cancer treatments. In
addition, underserved Latinas tend to have inadequate knowledge and inaccurate beliefs about
their cancer and lack knowledge regarding their diagnoses and treatments (Ashing-Giwa et al.,
2006).


15
Treatment side effects are known to significantly affect patients cancer treatment
experience (e.g., quality of life, adherence to treatment, satisfaction with care). Maly et al.
(2010) discussed the three most common treatment-related symptoms for breast cancer patients,
which included pain, nausea, and depression. Although side effect vary depending on the type of
treatment received, patients expressed side-effect symptoms with common treatments such as
chemotherapy, mastectomy, and lumpectomy. Breast cancer patients who undergo
chemotherapy and radiation therapy tend to experience side effects such as nausea and vomiting,
while those who undergo surgery would often experience post-surgical pain (Maly et al., 2010).
Furthermore, patients who have chemotherapy report symptoms of depression and fatigue.
These side effects are common among most patients, but with the additional treatment challenges
that medically underserved Latinas face, these side effects only makes the perceived treatment
experience more negative.
It is without a doubt that the experience of diagnosis and treatment of breast cancer alone
can cause distress along with other psychological concerns not to mention the psychological
distress that could also accompany cancer treatments. In one study, the authors found that most
breast cancer patients were concerned about familial burden, but in general, the Latina patients in
the study seemed to accept their cancer diagnoses as well as the fears and suffering as part of
their fate and spiritual journey (Ashing-Giwa et al., 2006). In another study, the authors found
that younger women diagnosed with breast cancer were more likely to experience depression
than older women. The study also noted that less acculturated patients were unlikely to achieve
resolution to their depression (Maly et al., 2010). These psychological elements make breast
cancer treatment and side effects more difficult to deal with, particularly for those with very little
emotional, social, and financial support.


16
In regards to coping methods, religiosity, hope, positive thoughts, and support were
typically mentioned as coping methods that Latinas engaged in (Culver, Arena, Antoni, Carver,
2002; Nedjat-Haiem, Lorenz, et al., 2012). Multiple studies have cited religiosity as a helpful
coping mechanism among breast cancer patients. Latinas tended to report more religious coping
than non-Hispanic Whites and also to utilize self-distraction and venting as coping methods more
often than African American women and non-Hispanic White women (Culver et al., 2002).
Ashing-Giwa and colleagues (2006) reported that Latinas have a high tendency to rely on their
inner strength and prayer as a coping response to their breast cancer treatments. In a study with
Latina cancer patients, women identified faith as an important factor in managing their condition
and a source for helping them lower their anxiety and cope with the uncertainties of cancer
treatment (Nedjat-Haiem, Lorenz, et al., 2012). There is also less tendency to use humor as a
method to cope with cancer among Latinos, as compared to non-Hispanic whites (Culver, Arena,
Wimberly, Antoni, Carver, 2004). Moreover, a positive attitude would also help patients be
more resilient to their illnesses as it can be a key attitude to overcoming illnesses (Ashing-Giwa
et al., 2004; Nedjat-Haiem, Lorenz, et al., 2012).
Emotional support is also an important piece in helping patients cope. Numerous studies
have discussed family as being the primary resource for Latina breast cancer patients. Ethnic
minority women in general sees value in getting support from immediate and extended family
and links this value to their emotional well-being and treatment adherence (Ashing-Giwa et al.,
2004).


17
CHAPTER II
SUMMARY AND RESEARCH QUESTIONS
There is limited information on how underserved Latina breast cancer patients experience
breast cancer treatment in light of the multiple societal disadvantages that affect their ability to
access and/or complete their treatment. Furthermore, the current body of literature fails to
capture how these experiences can affect the patients breast cancer treatment adherence and
related outcomes (e.g., treatment completion, survival). This study will explore how
underserved Latina breast cancer patients experience their treatment in light of multiple and
complex social disadvantages.
Treatment experiences include Latina patients perceived satisfaction with the quality and
quantity of care, quality of life, overcoming treatment barriers, communication with their
healthcare providers, coping with side effects, quality and type of treatment decision, and
adherence to their recommended treatments. To better understand Latinas perceived treatment
experiences, in-depth interviews with medically underserved Latinas who have undergone
treatment for breast cancer will be analyzed. To enhance our understanding of how provider and
healthcare system level factors further contribute to such treatment experiences, in-depth
interviews with healthcare providers of Latina patients will be analyzed as well. The information
that exists does not provide a comprehensive exploration of the patients and their healthcare
providers views and experiences treating medically underserved Latinas. More specifically, the
in-depth analyses will seek to answer three primary research questions from Latina patients and
their healthcare providers perspectives:


18
1. How does the process of being diagnosed and treated for breast cancer affect the overall
perceived cancer treatment experiences (e.g., quality of life, treatment side effects, and
family relationships) of medically underserved Latina breast cancer patients?
2. What specific patient factors (e.g., language, literacy, level of education, cultural beliefs)
appear to affect patients treatment experiences related to psychological concerns (e.g.,
distress, anxiety), coping abilities to deal with such concerns, and with treatment-related
challenges (e.g., competing responsibilities, treatment decisions)?
3. What specific healthcare system factors (e.g., system practices and logistics, treatment
procedures, healthcare providers roles) are likely to affect patients treatment
experiences related to initiating, adhering, and completing their breast cancer treatment?


19
CHAPTER III
METHODS
This study is part of a larger project conducted to better understand the psychosocial and
psychoeducational needs of underserved Latinas receiving breast cancer treatment at a safety net
hospital. The larger study also aimed at designing and assessing the feasibility of an intervention
to target the needs identified and to improve the patients treatment outcomes. The larger study
had two primary phases. The first phase consisted of formative research where patients
previously diagnosed with breast cancer and healthcare professionals involved with the patients
medical care were interviewed regarding the psychosocial and psycho-educational treatment
needs of Spanish-speaking Latina breast cancer patients. The information collected in the
formative interviews were then used to guide the development of a culturally-based intervention
for Spanish-speaking Latina breast cancer patients. In the second phase of the larger study, the
intervention was implemented with Latina breast cancer patients. The current study will use the
information gathered in the first phase of the project to explore how underserved Latinas with
breast cancer appraise the treatment experience from the time they are diagnosed to the time they
complete their treatment. In order to provide a more comprehensive view, the information will
be obtained from both Latina patients who have undergone breast cancer treatment at the safety-
net hospital and from healthcare professionals who provide care for these breast cancer patients.
Qualitative methods will be used to understand and analyze the information gathered from both
patients and healthcare providers.
Participants
Key Informants. Seven key informants (KIs), referred to as healthcare providers (HPs),
were interviewed first. The HPs were individuals involved in the care of breast cancer patients.


20
HPs included a medical oncologist, a breast surgeon, a breast clinic director, a psychologist, a
research coordinator, and a couple of patient navigators. Socio-demographic information were
collected from the HPs. Six female HPs and one male HP participated in the study. Four HPs
identified as non-Hispanic and three identified as Hispanic. The five HPs reported working at
the safety net hospital from less than one year to 6 years (M= 2.38, SD = 2.40). The two patient
navigators reported working at the safety net hospital from five to six years (M= 5.50, SD = .71).
One of the patient navigators reported speaking and reading Spanish better than English.
Patients. Seven Latina breast cancer survivors participated in the study. All of the
patient participants were Spanish-speaking Latinas aged 18 and older. They had all received
treatment at a safety-net hospital in Denver, Colorado. The patient participants ages ranged from
38-69 years (M = 48.43, SD = 12.58). The majority of the patients were married (71.4%) and
the remaining were separated (14.3%) or widowed (14.3%). Patient participants reported being
unemployed (85.7%) and most participants (71.4%) reported having a household income from
$1,001-$2,000 per month.
Spanish was preferred for the majority of the patient participants (71.4%) and the
majority of the patients were born in Mexico (71.4%). The patient participants had cancer stages
I-III with one that was unknown. 42.9% identified as having stage I, 28.5% identified as having
stage II, 14.3% identified as having stage III, and 14.3% identified not knowing the stage that
they had. 85.7% of the patients reported having had surgery, 71.4% reported having
chemotherapy, 42.6% had radiation treatment, and 42.6% had biological treatment.
Procedures
Participants were recruited by a patient navigator employed by the safety-net hospital in
Denver, Colorado. Patient participants were excluded if they reported having mental health


21
issues (e.g. cognitive impairment, substance abuse, history of suicidal ideation/attempts). After
receiving consent from participants, HPs and patients completed semi-structured interviews that
consisted of ten main questions with follow-up probes (Appendix A). Each of the individual
interviews were between 30 minutes to an hour in length and was audiotaped so that the
interview could subsequently be transcribed, analyzed, and checked for accuracy. The
interviews for the patients were conducted in Spanish and were later transcribed and translated
into English for analysis. Each translated interview was compared to the original Spanish
version by two independent bilingual researchers to ensure translation accuracy and consistency.
The purpose of the HP interviews was to gather in-depth information on what resources are
currently available for this population, what needs remain, and how these needs could best be
fulfilled. The patient interviews focused on their experiences going through treatment and what
they thought would have been helpful during their treatment. For both interviews, the goal was
to identify what has impacted the experience for Latina BC patients and what recommendations
HPs and patients would suggest to help build a support program for Latinas undergoing breast
cancer treatment. The perspective of patients provided information from those who have gone
through the experience of breast cancer treatment and the perspective of HPs provided
information from those who provide such treatment, including supportive and treatment care
services. Following the interviews, patient participants were compensated $25 for their time.
Prior to the interviews, all participants completed a socio-demographic questionnaire
(Appendix B, C, and D). The questionnaire for HPs asked basic questions about their ethnicity,
length of time they have been providing services, and their role at the hospital. Patient
participants were also given a questionnaire that requested information about their age, gender,
education level, employment status, and income bracket.


22
CHAPTER IV
ANALYSIS
Ethnographic content analysis (Altheide, 1987) was used to identify relevant themes that
the HPs and patients provided during the interviews. Ethnographic content analysis is a
technique used for identifying and analyzing documents for relevance, significance, and meaning
with an emphasis in discovery and description (Altheide, 1987; Altheide, 1996). Its reflexive
approach allows for the discovery of new themes and allows for a wider range of ideas and
concepts as compared to using a quantitative content analysis alone. Krippendorff (2004)
described content analysis as a research technique and scientific tool that involves specialized
procedures to provide new insights, increase a researchers understanding of a particular
phenomenon, and informs practical actions. Thus, this study followed Krippendorff s (2004)
qualitative methodology for ethnographic content analysis.
Krippendorff s analytical steps for ethnographic content analysis include unitizing,
sampling, coding, reducing, inferring, and narrating. The first step of unitizing requires
researchers to identify meaningful segments of text and categorize them into common themes.
The themes would then be categorized into a coding scheme to help researchers examine the text
for specific information and data. The development of the coding scheme will be guided by the
research questions proposed to ensure that the themes are relevant to the topic of the study. After
a coding scheme has been developed, the themes would be reduced to broader categories to make
the data more manageable. Following the reduction of themes, researchers would then infer
what the data means within the structure of the research questions. The final step is narration,
which refers to the compilation of the conclusions made in an understandable format.


23
CHAPTER V
RESULTS
Research Question 1
How does the process of being diagnosed and treated for breast cancer affect the overall
perceived cancer treatment experiences (e.g., quality of life, treatment side effects, andfamily
relationships) of medically under served Latina breast cancer patients? The overall perceived
treatment experiences of underserved Latina breast cancer patients is characterized by confusion
and a sense of hopelessness from the time of diagnosis and throughout the duration of treatment.
This overall experience is influenced by patients lack of knowledge about their disease and
about what the treatment entails, which lends to fear, distress, and delays in treatment. Most
patients mentioned not understanding their diagnosed breast cancer stage, with the exception of
one patient who recalled being diagnosed at Stage I. For example, when asked what aspect of
their diagnosis patients had trouble understanding or were not clear about, one patient stated,
My cancers stage. That, I did not understand. I dont really know in what stage my cancer
was, or the size of the tumor. Patients who reported less confusion, although they still felt
hopeless, were patients who had prior family experience with breast cancer. Two patients
discussed the family cancer experience prior family experience with breast cancer. For example,
one patient stated that it was tough for them to cope with their diagnosis due to family cancer
history, stating, It was very difficult, because I had, at that moment, I had four sisters with
breast cancer, and it was difficult to know that I had it, too. At the moment of the diagnosis, it
was very difficult. This particular patient felt that they had understood the disease better since
she had experienced it with her sisters but she explained that the diagnosis was difficult because
she knew what her sisters were going through.


24
Healthcare providers described the treatment experience of patients as a roller coaster and a
lifelong memory that was affected by treatment barriers, the treatment process and by patients
family involvement. The typical treatment sequence for most patients includes surgery,
chemotherapy, blood draws, sometimes radiation, and treatment follow-up appointments. One
healthcare provider described the emotional process that patients go through as the patients move
through the treatment sequence. They stated,
I think its more like the times they are coming, and the time they are seeing themselves
they are getting better in some ways, probably they feel better. But still they are
struggling with their emotions. Its like a roller coaster, you know. Like sometimes they
can be alright, and at the next appointment, in two months probably, well see them again
with depression and crying.
The same healthcare provider described the treatment journey as a lifelong memory. They stated
that patients felt that the memories of what they went through will always stay with them like a
bad memory.
In addition to when the HPs discussed the treatment experience of patients, they noted
that from the moment patients get diagnosed, patients often misunderstand or misconceive their
diagnosis. Three HPs mentioned how patients have a misconception of what their diagnosis and
treatment means. One HP noted that the concept of cancer is hard for many patients. The HP
stated,
[Patients overcome] these huge concepts of cancer, equaling, Im gonna die
immediately. They just have this idea what they are going to be, the preconceived
notion of what cancer is and what cancer treatment will entail and you know, weve come
a long way and we try to tell them, no, its not gonna be that way, no, you have options,
you have good things that can happen.
Another HP also stated,
From the beginning, the first thing when they hear the word cancer, the first meaning in
their head is death. Okay, what is happening with me now? And the other thing is
chemo. So they dont even know the word chemo. Well, they know the word
chemo, but they dont know exactly the details about the treatment. So the first thing is,


25
Okay, I will lose my hair, I will be so weak, and I will be sick in the bed, I wont, I cant.
I wont take care of my kids and stuff like that. So that is the first idea in their head.
A different HP discussed how patients felt that they would never be free from cancer and that if
they go and remove a tumor, the patient might be afraid that if they touch their tumor that it
would be like a spore and spread. Similarly, two HPs discussed how patients also misunderstand
their disease. The HPs described situations that they explained to their patients what their
disease and prognosis is, but sometimes the patients come back with different information. One
HP noted,
To have that information received appropriately, sometimes, its hard. Like you will
explain to them certain things and when you ask them if they understand maybe the week
after or a couple of weeks, after that specific encounter, what they remember is
something completely different from what you told them.
Treatment Options and Treatment Delays. In addition to the diagnostic process, HPs
and patients also noted treatment options, as a topic that positively affected the patients
treatment experiences because having options provided patients with a sense of control and hope.
Although some patients defer to their providers for their treatment decisions and are satisfied
with the decision that the provider makes, they still want to be given the options for their care.
As patients discussed in the interviews, when they received options and advice regarding what
treatments they should accept, they stated that they were satisfied with their decisions after their
providers explained their options. One patient said,
They gave me options. There were three options: the first one was to remove the tumor.
The second one was to remove a breast where the illness was, and third one, was to
remove both.
That particular patient described feeling satisfied with her decision after being provided with
options. She stated, At that moment I made the decision to remove a whole breast. But two
years later, I came back so they could remove the other one and right now Im very, very happy


26
with the decision I made. However, another patient discussed feeling negative about her
treatment decisions as she did not have many options, saying,
The doctor told me, we have to remove the breast, there is no other way and that do
you agree? I told her yes. I didnt think about it twice because if I wanted to be alive, I
had to remove it, there is no other option. I told her, its ok.
The patient went on to describe feeling upset after her breast was removed and felt depressed
until she met other patients similar to her. An HP also felt that it was important that patients
understand their treatment options once they are diagnosed, as it is one of the most salient
educational needs for Spanish speaking patients to understand what is happening to them and so
that they can have input on their care.
In addition to presenting patients with treatment options, patients and HPs also
acknowledged that there are treatment delays both from the patient and the healthcare system
causing patients to have an overall negative treatment experience. They identified patients
waiting to get treatment even after diagnoses as well as the system causing delays even when the
patient is seeking medical attention. By delaying treatment, patients conditions may worsen
leaving them with less treatment options, more invasive treatments, and more fear and worry.
One patient identified the hospital that delayed her treatment unnecessarily and that lead to
dissatisfaction with the treatment experiences. She stated that she had concerns about a lump but
did not get treatment right away. She said that her mammography results came back and she was
told that her lump was nothing, however she said,
I would still feel the little lump and pain and until I got angry at the doctor, I told him,
the lump is noticeable and it hurts a lot and I stood up and so that was when he became
worried and he sent me to specialists.
She continued on saying, But then I got it [the lump] here and over here they did not make an
effort to make a biopsy when I told them. She felt that if her lump was treated sooner, it would


27
not have reached the point of needing to remove her breast, which contributed to a negative
treatment experience. Another patient described her decision to delay treatment, which made her
satisfied because she finally felt ready and supported to pursue treatment. She felt like she knew
what her diagnosis would be and decided to wait and take her time before getting treatment. She
delayed treatment because she needed time to face the situation and after getting support from
her family, she said it was easy to undergo treatment because she had their support. However, it
is unknown if the patients breast cancer had progressed and if her treatment options were fewer
due to her delaying treatment which could also affect how she views her overall treatment
experience.
Two HPs identified treatment delay as a factor that negatively affects patients treatment
experience, as well. One HP identified system factors as one thing that could cause delay in a
patients treatment. For example, system barriers include getting delayed access to previous
records. The HP stated,
It has been difficult, I have noticed, getting those hospitals to give us their [patient]
images before the patient gets here. Because otherwise it is almost a waste of time for
them because I cannot give them a complete consult without having that information that
they have already had done and its a waste of time for them and another waste of
radiation exposure to have them get a repeat mammogram if they just had one, two weeks
ago.
By not having the records needed, HPs are unable to move forward with the patients care which
consequently may result in the delay for patients treatment. Another HP discussed patients
having personal barriers for treatment delays that may cause them to have a different experience.
The HP discussed one patients case, in particular, and stated that this patient walked around
with a tumor in her breast for two years before she decided to have a mastectomy due to personal
barriers that she had encountered. The patient may be satisfied with the decision to delay


28
treatment, but she may also encounter less treatment options and more rigorous treatments due to
how her disease may have progressed.
Family Involvement. Family involvement was described as playing a dual role in how
positively or negatively patients experience their diagnoses and treatment journey. Inclusion of
the patients family was crucial to the patients care. Family members are the patients main
support system and are a large part of the patients decision making process. For example, as
mentioned earlier, a patient delayed her care until she could get support from her family which
helped her feel more satisfied with her decision. Family members also served as interpreters and
a source for patients to stay strong through their battle with cancer which helps with how patients
perceive their treatment experiences. While family members are a useful resource, it appears
that patients are also afraid to be a burden on their family members and would withhold
information from their family members. Including the family members is an important aspect
during the patients treatment, but patients also try to protect their family members and
sometimes would prefer not to share all elements of their care with their family. Although it
might be helpful for patients to withhold their treatment statuses, if providers do not help patients
find the proper outlets for coping, patients will likely develop increased distress and feel more
negative about their treatment experience.
The discussion of family involvement was common amongst the patient interviews.
Patients discussed how their family members were either involved from the beginning of their
treatment decisions or after they had initiated it and were already going through treatment. Six
of the seven patients described how family support played a significant part in how well they
were able to cope with their diagnosis and treatment. Patients described spouses, their children,
and their sisters as sources of emotional and tangible support. One patient stated, I think that it


29
would be harder to endure this, when you dont have the support of your partner. Another
patient expressed,
I had a lot of support from my family, my sisters, because they had already been through
it. They helped me and by using the wig and [the] wig more than [a] turban and anything
else, that helped me a lot and they helped me a lot to keep moving forward.
One of those patients also noted that their daughter was also her interpreter and went to all of her
appointments with her. Family protection was another part of family involvement that patients
discussed as what helped them through their treatment. One patient stated, My daughter would
not leave me... and I, so that she did not feel bad, I would be strong. Another patient described
a situation where she did not want to tell her mother-in-law and father to protect them and felt
that they resented her for not telling them sooner.
Six out of the seven HPs acknowledged family involvement as part of the treatment
experience. An HP stated that they heard their patients say that the beginning is tough and that
family members try to avoid the situation, but that family eventually gives support to each other.
Another HP said, If you dont deal with the family up front, then youre in trouble. You have to
involve everybody. You have to understand that decisions cannot be made until a whole family
meeting is done first. These two HPs both noted that multiple family members get involved and
that different family members get involved at different appointments. Family involvement
serves as support but one HP stated communication with family members can vary too such as
when family members all want to know what is happening but they understand the situation
differently, which can complicate things. The HP also noted,
A lot of family members want to just know, put this person in a bubble and not have them
do anything and you know, feel like they just need to sleep all the time and just kind of
ride it out.


30
Lastly, another HP expressed that although patients have a lot of family involvement, especially
with family members going to appointments, sometimes they do not want their families to hear
about what they feel and would rather express those feelings elsewhere, which could negatively
impact patients experiences especially if the may feel overwhelmed by their family or view
themselves as a burden.
Treatment Side Effects and Provider Recommendations. Side effects from any part
of the treatment process negatively impacted the patients overall perception of their treatment.
The side effects not only took a toll on the patients physically, but they also made patients
depressed, affected their quality of life, and made patients afraid of the side effects. Each patient
described having different symptoms depending on their case. One described having hot flashes
following her treatment and changes in her nail color after going through chemotherapy.
Another described having dizziness and kidney problems due to the chemo entering too fast
which caused her kidneys to shut down. Another patient described having a burning sensation
associated with radiation. This particular patient also described having side effects with
chemotherapy, as well, which included diarrhea and altered taste to food. Another patient
described having altered taste as well as weight gain during her treatment. She also described
having fatigue along with two other patients, but the side effect that hurt her the most
emotionally was her hair loss. Hair loss was discussed amongst two of the patients in terms of
side effects. One patient stated,
It was falling out almost, like my hair burned. [When] I would brush or [when] I would
take a shower, I had to plug the tub so that it would clog up with the hair. [In] three days
[my hair] fell out. My head hurt a lot before it feel out.
More patients discussed this topic when they talked about their body image concerns and how it
related to how emotionally distressed they were while undergoing treatment. Other side effects


31
that patients discussed were nausea. Three patients discussed their bout with feeling nauseous.
A patient described the following situation,
There are times that [I have] nausea, vomiting, and not having the same energy you have.
It is more difficult to have a life. For example that I was working and not to go to work
and be sick all the time and after the chemo, having to throw up and be dizzy and not to
be able to get up from bed, that is difficult.
The patients account of feeling nausea, dizziness, and fatigue interfered with her ability to work
and continue on with her daily routine like she used to. Another patient also mentioned vomiting
when they were going through chemotherapy but that there were good and bad days, so some
days she would just vomit once and feel better. Even on the good days, her side effect would
still interfere with her daily routine.
The side effect that patients discussed most was pain. The pain from treatment and the
fear of the pain adversely affected the patients treatment experience. Five of the patients
discussed experiencing pain during blood draws, during their biopsy before getting diagnosed
with cancer, during radiation and chemotherapy, and pain after receiving surgery. Patients were
concerned with the burning sensation that caused pain during radiation and particularly with
chemotherapy and a couple patients described the feeling of actual pain in their bones from
treatment. One patient recalled the following: I didnt have any infections, nor complications,
or nothing. Only the pain that hit me when they first operated on me, here in my bones but [that
is] because my potassium had gotten really low. She also recalled the pain of her hair loss
saying, The skin swells or I dont know what, it hurt. Like little bumps came out and like that,
but like it hurt and then it began to fall out. Pain affected many of the patients overall quality
of life and left most feeling distressed about their treatments.
The HPs also recognized that side effects affects patients experiences negatively.
Similar to the patients accounts, the HPs described feelings of fatigue and pain when patients go


32
through treatment. These feelings may affect a patients ability to work and to have a normal
routine in their daily life. Four of the HPs discussed the treatment side effects that patients
experience during the course of treatment, which includes fatigue, skin changes, weight gain,
hair loss, and nausea. One HP noted,
So what will happen is, is they will have surgery, they will recover for about a month and
then they will start chemotherapy so that month one is surgery, surgery and recover,
month two to six or two to five is chemo and chemo is where if they are going to lose
their hair, thats when the hair loss occurs and it is when all the nausea and vomiting and
you know all that, those side effects can occur.
Another HP described patients biggest complaint regarding radiation is that it makes them tired
and their skin changes like a sun burn. Although radiation does not cause hair loss, an HP noted
that it makes patients tired. They also stated that patients who work can typically work when
they have radiation but they have a more difficult time when they are going through
chemotherapy due to the side effects.
When patients and HPs discussed side effects, HPs would also note that providers would
recommend lifestyle modifications to patients who are going through and finishing up treatment.
Although patients did not discuss lifestyle modifications, most of the providers discussed the
different recommendations as they may help the patients overall experience by improving
patients quality of life and psychological distress. HPs discussed providing recommendations
for weight management, stress management, medication adherence, increased activity and social
involvement, and lifestyle maintenance. A couple HPs stated that they try to get their patients to
continue maintaining their normal routine and regular lifestyle going. An HP said, I hear from
the doctors here when they interview their patients, definitely, it is part of their treatment. Its
not only medication, its everything. Its exercise and diet. The HP continued on and described
how providers suggest these recommendations along with stress management and


33
social/recreational activities as a way to improving the patients moods, which would help
increase the patients immune systems. If patients are able to follow the recommendations, their
uplifted mood and health may help them have a more positive treatment experience and more
satisfaction with their care. HPs recommended that the best way to address this lifestyle
modification would be to help patients adapt to these changes by gradual progression. They
specified by saying,
Everything has to be gradual, you know. Slow and gradual. So in that way, it will be
easy to assimilate for that patient. You cant push her to do something. If she doesnt
want it, shes not willing to do it. Slowly and every time you meet her you have to say,
Hey, what did you do yesterday? Okay, you didnt walk that 5 steps, at least 3? At least
2? You know, try to do that measuring there and do it progressively].
On the other hand, another HP felt that asking patients to do a lifestyle change is an unrealistic
expectation that imparts a pressure and a behavioral expectation on people that maybe this is a
bad time to impose on them. In addition, providers noted that some of the recommendations for
life modifications can make the patients experience more difficult because they cannot do the
recommendations due to old age or competing responsibilities, which may cause more distress
during treatment.
Complementary Treatments. During the interviews, it was also apparent that patients
and HPs were aware of patients using complementary treatments as part of the process of their
treatment. While not all patients believed in using complementary treatments, some patients
discussed using complementary treatments, such as reiki and aloe to help them feel better. By
engaging in complementary treatments, these patients could potentially feel better through the
use of an alternative but it could also be because they are engaging and partaking in their care
more and thus creating a more positive treatment experience for themselves. Patients who put
their hope and trust in Western medicine appeared satisfied with their decisions to not use


34
complementary treatments which also did not seem to affect their treatment experiences. Two
patients spoke of their belief in Western medicine and trusts in medicine in that it would help
their disease. One patient said,
And we talked about medicine, well, what the doctor tells me I am going to do. I didnt
try looking for other treatments, like per say naturalism that a lot of people [use], I dont
know what, like I feel like no. It could be that I dont have much faith in that naturism, I
am not really, I am not really into things like naturism and medicines of I dont know
what, that who knows what. But like no, I believe more in medicine.
When a couple HPs discussed complementary treatments, they noted that they assume
that patients may be taking other complementary treatments. A provider felt that although
nutrition and supplements are used by everyone, it is especially present in the Latino patient.
The use of shamans, supplements, and certain herbs are tricky for providers to navigate with
patients, especially if patients are undergoing radiation or chemotherapy. The HPs understand
that it is tricky not only due to the biochemistry of the complementary treatments but also
because of where they may have gotten the supplements which may be from a family member.
They cannot immediately dismiss the supplements to patients as patients may view it as being
disrespectful or they may put a lot of trust in the supplements/complementary. If it gets
dismissed easily, that could potentially lead to distrust in the provider and create a negative
treatment experience for patients.
Research Question 2
What specific patient factors (e.g., language, literacy, level of education, cultural beliefs)
appear to affect patients treatment experiences related to psychological concerns (e.g., distress,
anxiety), coping abilities to deal with such concerns, and with treatment-related challenges (e.g.,
competing responsibilities, treatment decisions)?


35
Language, Education, Literacy, and Health Literacy. Overall, patient factors, such as
language, level of education, and health literacy did seem to affect patients treatment
experiences in the amount and quality of care that they received. The lack of language-
appropriate materials and language barriers negatively affected how patients understood their
diagnoses, treatment options, and the level of resources that they received. Many HPs and
patients discussed patients not having a high level of education which affected their ability to
read resources and information about their illnesses. It also relates to patients low health and
cancer literacy as they may not have as much experience with medical terms and knowledge.
Without an adequate level of information about their disease and treatment, patients may have a
negative treatment experience if they cannot understand what is going on with their treatment.
Additionally, if patients are not receiving the proper resources that could help them cope with
their disease, their quality of life is likely to be negatively compromised.
One patient directly identified language as a barrier for patients getting the resources that
they need. Although she did not struggle with this barrier, she stated, For someone who does
not speak English, that doesnt understand, that does not know how to read, its difficult because
they dont even know where to start. Three HPs identified language as a barrier to treatment in
terms of hindering patients ability to understand their diagnoses and treatment options.
Language barriers could cause treatment misunderstanding, treatment confusion, and likely lead
to distress or frustration for patients receiving treatment. Due to this barrier, treatment may be
delayed and patients may not get the quality of care that is needed thus creating a very difficult
treatment experience for patients who are only Spanish-speaking.
As one of the patients mentioned earlier, not only is language a barrier, she also noted
literacy issues. She mentioned that she had received many written materials for resources and


36
that the education piece was easy for her because she knows how to read and write, but she could
see how it would be difficult for other patients who are unable to read. She stated,
They gave me a lot of books to read. I think that in my case it was something easy,
because to know how to read, know how to write, know everything, so its easier to be
able to have access to those things. But what I would like... for example, many times
[this happens]. Okay you have cancer and there, here is this, read it. But for the people
that do not speak, who dont read, its difficult because one says, What happened? What
is going on?
One HP also noted that many underserved Latino patients have low literacy as compared
to many other patients that they saw. They related this issue back to education. Patients did not
discuss education specifically aside from one who discussed literacy issues, but HPs discussed
this topic multiple times. Two HPs identified education level as a general barrier to patients
making treatment decisions and understanding their treatment decisions. Three HPs described
patients lacking education in general. They described patients coming from various education
levels stating that some didnt go to school in their home country and some didnt finish grade
school. Patients who had low education seem to have more difficulties with their treatments and
thus may have a more challenging treatment experience than those who are able to understand
the course of the illness.
Along with literacy and education, the topic of low health literacy and low cancer literacy
was also discussed. Only one patient described trouble with cancer literacy. She described not
understanding her diagnosis, why it happened, and how the cancer formed and she still does not
know. With the diagnosis of cancer and having low cancer literacy, the patient stated that she
felt fear. However, she also felt like she was satisfied with her treatment decision to have
surgery because her doctor discussed the treatment options with her.
HPs also discussed the issue of low health literacy and particularly low cancer literacy.
Three HPs expressed that this particular population has low health literacy. Providers explained


37
that even though the patient may be smart, their understanding of medical terms is limited. Six
HPs discussed low cancer literacy and expressed this issue through multiple examples. One HP
stated,
We have interpreters here, but it is not so much the language. Its education and literacy
and even some of the most sophisticated people that Ive worked with here as patients,
their understanding of chemotherapy, or radiation, or surgery, was very, very, very basic.
Another HP echoed similar issues, asserting:
In general, [the] patients that we see, their literacy levels are pretty low so you know
when you are giving them different options, you know, when youre trying to explain to
them difficult concepts, such as cancer, on its own, it sometimes can be hard to get across
that information.
Lastly, another HP provided a similar response, but in terms of treatment:
When it comes time to talk about therapeutic options, including study enrollment and
options in terms of systemic therapies, response rates, and progression for survival, issues
that are somewhat non-paternalistic, that becomes a bit of a barrier in terms of
communication.
The examples that are provided demonstrate how a patient can easily misunderstand/misconceive
their cancer if they have low cancer health literacy. This too may cause patients to feel
overwhelmed by their diagnoses and treatment, which likely leads to increased distress and
anxiety if patients do not understand all the elements involved with cancer care.
Cultural Health Beliefs and Behavioral Norms. Cultural health beliefs and how
providers react to these beliefs may affect patients treatment experiences by influencing how
patients view their illness and how they approach the treatment for their illnesses. In general,
cultural health beliefs appeared to negatively impact how patients approach their illnesses when
they are diagnosed and before they received treatment. However, many patients also held beliefs
that helped them cope with their illnesses providing them with a more positive treatment
experience. Three patients expressed cultural health beliefs related to detrimental causes of


38
cancer that appears to have affected how they explained their cancer. For example one patient
thought that the cancer came because of something she ate like meat or because she did not eat
very healthy. Others had beliefs that affected how they approached the cancer treatment, such as
the belief that intervening with the course of diseases makes its progression worse (as opposed to
letting the disease run its natural course). For example, one patient described her concern about
surgery stating, I would get nervous because you hear that they operated on somebody that had
cancer and it extended and they died, right? One HP also observed similar cultural health
beliefs among Latina patients. The HP argued that a lot of patients hold beliefs about
predestination to explain why they developed cancer, which also appeared to be related to
fatalistic beliefs about their destiny once they have cancer. The HP described these beliefs
below:
Sometimes, they [the patients] give up from the beginning. If I have cancer, its because
[of] Gods decision. You know, religious things. Gods decision is what is meant to be
for me and thats it.
With these beliefs, patients may be fearful and delay treatment if they are not explained the
origin of cancer and how treatment nowadays can help change their destiny. One patient noted,
I hope in God and trust that medicine is advancing so much that there will be a cure for this.
Patient education that is consistent with their cultural health beliefs might instill hope and
improve their overall treatment experience.
Some of the cultural norms that appear to influence the patients experience, may include
Latino patients tendency to respect authority figures and consequently defer to their
providers knowledge and opinions. One HP stated, The Latino patient well, kind of looks at
you with little bit more you know you are like the godly or fatherly whatever figure. Another
HP agreed stating, In residency, I worked with a lot of Hispanic women as well, and it seems


39
[to be] a different culture. Doctors are given more of a paternalistic role, and patients just do
what their doctors tell them. Although this concept may seem like patients have little control
over their treatment decisions, most of the patients who deferred to their providers felt
satisfaction with their treatment decisions and felt like they had a good treatment experience
when they deferred to their providers, a cultural norm highly sanctioned within traditional
cultural values.
Due to deference to authority figures that Latino patients typically ascribe to, patients
sometimes have trouble advocating for themselves. As an HP stated, That patient who is shy,
and who is not an advocate for herself wont necessarily tell me that shes having trouble with
this or the other. Another HP described their experience with patient self-advocacy and felt that
this population tend to ask fewer questions than non-Hispanic women. If patients are having
trouble advocating for themselves with their HPs, they may end up having questions that are left
unanswered, feel that they must follow a course of treatment that they do not understand, or they
may not get the resources that they need. Thus, HPs as respected figures need to be more
proactive requesting questions to better understand and incorporate their Latina patients wishes
into their treatment, overall creating a better treatment experience for them.
Alternatively, patients who reported advocating for themselves believed it made a
difference in their experience. During the patient interviews, some patients stated that they
would advocate for themselves to their providers. Two of the patients stated that when they
detected their lumps, their doctors would say that it would go away but they fought and came
back for a check-up again until they were properly diagnosed. They also stated that they
advocated for themselves by asking questions and sought out information about their diagnoses


40
to help them understand their illnesses better. Those who advocated for themselves felt
empowered and had a better treatment experience since they understood their illnesses better.
Psychological Concerns. Patients diagnosed and undergoing breast cancer treatment
experience a vast range of psychological concerns that negatively affect their treatment
experience. Patients have an overwhelming experience characterized by fear, anxiety,
depression, body image issues, sleep problems, relationship problems, personal identity, stigma,
and psychosocial comorbidities that affect their care, decisions, and recovery.
When patients discussed psychological concerns, they discussed their reaction to their
diagnoses as being marked by depression, fear, loneliness, anxiety, family worry and concerns,
and body image concerns, which appear to contribute to an overwhelming experience. Two
patients discussed their reaction to their diagnoses expressing that they felt shocked and one
patient expressed depressed mood when they found out about their diagnosis. One patient
expressed shock that they received a diagnosis at a younger age. She stated,
It was difficult because in my family, there had never been persons diagnosed with
breast cancer and I am 38 years old. I think that it was an early age to have breast cancer.
Well I think that sometimes it shouldnt happen until 50 years old, not faster. Um, I felt
something like, like a shock.
Another patient noted a similar feeling as she was just 40 years old. This same patient also noted
her reaction to the diagnosis. She stated, When they first gave me the news, yes it was difficult
for like two weeks but then I surpassed it and then I began to think differently. She stated that
during the two weeks, she felt sad, but improved with family support.
Depression was a common topic among patients. Due to the invasive treatments for
breast cancer, the depression the preceded and followed treatments negatively impacted the
treatment experience for patients. Four of the patients described having depressed mood and
feeling depressed at certain time during treatment. One patient said, and it were days that I


41
spent crying, sad, depressed, following her mastectomy. Another patient said, I got very sad, I
worried more because I would think they would operate on me and what if I dont come out of
it. A different patient expressed sadness and related it to her body image, saying, I felt very
depressed. I felt that I looked ugly, that I couldnt go out to the street anymore. People couldnt
look at me because I was somebody else.
Body image was a topic that six of the patients discussed as negatively impacting their
treatment experience. They identified the mutilation of their breasts, hair loss, and weight gain
as being very challenging and difficult to adjust to. One patient described her view of her body:
When they removed my breast, I looked at myself on the mirror and I saw myself with
only one breast, and then without hair and fat. But the breast too, well its part of my
body that Ive had forever and seeing myself with just one breast or with nothing now
that I have none, that was really difficult, as well. But my hair falling off affected me the
most. Because well it was outside, and it could be seen, and I could cover my chest.
One patient described that once she received her diagnosis, she knew that her hair was going to
fall off because of chemo and she anticipated losing a part of herself. She stated,
I had very long [hair] and it started falling off. And one see the pillow full of hair. You
see the shower when you are bathing. Many times [others] associate my hair is falling;
my eyelashes are falling with that. You are very sick and are even close to dying really.
Patients also discussed fear of suffering, of side effects, and of recurrence. One patient
felt fearful that chemo was going to cause her to have side effects like it did when she previously
underwent treatment. Another patient noted that she was afraid to confront her diagnosis
because of fear and that her worst fear is that the cancer would come back after it is gone. She
stated,
That is the worst fear. My doctor tells me that every year that passes is, the first year that
passes is the most dangerous because it can reoccur more easily. The more years go by,
she [the doctor] says, the better the chances.


42
One other patient discussed her fear of suffering through the pain. Also, mentioned earlier, a
patient delayed treatment due to her fear.
Patients also mentioned loneliness and anxiety, as factors that make their treatment
experience very difficult and overwhelming. One patient mentioned feeling lonely when her
spouse was unable to attend radiation with her. Two other patients expressed feeling anxiety.
One patient described her anxiety when she had her first biopsy. She was concerned due to
having small children and having no one to watch them if she needed treatment. Another
described feeling anxious due to her condition, in general. One patient expressed being
overwhelmed when she said, It is too much emotionally. You start with the diagnosis, the
operations, the surgeries, everything and you get tired. Emotionally, physically, you get tired.
Five HPs felt that patients have an overwhelming experience at one point or another.
They described patients having trouble processing all the pieces of information in particularly at
their diagnoses. Another psychological concern that all of the HPs discussed seeing was fear.
One HP stated, Its manifested differently, you know, everybody, but definitely, just the word
cancer is very frightening. Other HPs discussed how patients have a fear of recurrence or that
there is cancer elsewhere.
These concerns may also accompany two other components that were common themes
across the HPs which were anxiety and depression. Five of the HPs discussed anxiety and four
HPs discussed depression. HPs described patients having anxiety regarding their roles and
heightened anxiety in general. One HP described anxiety in terms of what patients expect their
care quality to be, stating:
I think they think that sometimes, theyre lower class that theyre working class people
and they enter this environment humble as it is, that aspect of the care becomes what may
be more relevant in Mexico, and that is, you have very much tiered services. And I think


43
that they look at themselves as vulnerable to being placed on a tier, which they would be
at home.
The discussion of depression revolved around a few topics. One HP noted that they see patients
who do not want to express what they feel even though they are expressing sadness. Another HP
felt that some patients come in with depression before their treatment and another HP shared
how depression was part of the rollercoaster experience that some of their patients felt. One
HP stated, They dont want to express what they feel. They keep it inside themselves, but you
can see that their expressions is sad but they dont want to talk about it. Another HP described
a patient they had who came back for a check-up and told the provider that in the beginning of
her treatment, she had a lot of depression and didnt want to leave her house but then after her
treatments, she felt better. However, the patient also stated that she had a difficult time when she
talked to her sister, who is going through the treatments that she had the previous year. The HP
felt that the memories will always remain and become a lifelong memory even though the patient
was no longer depressed. Associated with the anxiety and depression were sleep problems that
two HPs identified. One HP stated that following a diagnosis, the sleep problems and anxiety
issues that follow are profound.
An additional psychological issue that arose was the topic of body image. Six of the HPs
discussed this issue alongside relationship issues. One of the HPs discussed how it is important
to talk about body image with younger patients as they feel more uncomfortable without their
breasts. Another HP echoed a similar thought saying, I think older women in general are
probably less concerned. I think that the younger a woman is, you know when they are in their
40s and 50s, although this is not universally true. Along with concerns about their breasts,
patients also show some concern about hair loss and their overall sexual attractiveness which
relates to their relationship concerns. An HP stated:


44
Theyre concerned that their husbands gonna fall out of love with them, theyre
concerned that their sexual attractiveness is gone, theyre concerned that when you start
these pills and drugs and all the other crap that we do that youre not taking into account
their personal values and identity as you start these treatments.
Coping Methods. Overall, patients described using a variety of methods to cope with
their illness that ultimately helped them have a positive treatment experience, as it improved
their psychological health and satisfaction with their care. Patients were able to use a lot of their
own support and resources to cope with their diagnoses and treatment side effects. A few
patients demonstrated a fighting spirit characteristic, meaning patients took on a fighting
attitude that was beyond just having hope for their illness to improve. These patients were
determined to do everything in their power to not let their illness take over their lives. Also as
discussed before, patients tried to stay strong as they did not want to burden their family
members, thus they would also opt to rely on their faith and the support from their communities
to cope. However, their strongest coping mechanism was family. Many patients felt that they
made it through their treatments with their familys help. Those who do not have family nearby
would respond that they have felt a sense of loneliness.
Patients and HPs would also include cognitive aspects of avoidance, denial, reframing,
and acceptance as coping methods that helped patients move forward with their lives. These
coping methods that patients employ demonstrated how some patients tend to cope when they
encounter stressful situations. By understanding how their patients approach stress, providers
may be able to help some patients strengthen their coping skills and help patients reframe their
cancer diagnosis and treatment situations from a more favorable perspective.
Patients described the following coping methods: family support, family protection,
social support, spirituality, and acceptance. Six of the seven patients stated that they used family
support and described how it is helpful to get through the breast cancer treatment experience


45
when they have support from their spouses and their family members. Some women had family
members who had gone through what they have been through when they were treated for breast
cancer. One patient stated,
I think that the support of others like the ones in your family, your friends, helped a lot.
The treatment helps a lot but friendship, the love of people can help you sometimes more
because you feel that they are with you, you have more strength to go forward. And if
you feel alone, you feel more depressed.
Patients also described how their family members would tangibly help them, making the
experience more bearable. For example, one patient discussed how her daughter shaved her head
so that she could prepare for a wig. Another patient said that she felt better talking to her family
members, perhaps because she was able to share her treatment experience with loved ones.
Patients also used family protection as a coping method to avoid overwhelming others with the
experience. Additionally, patients also discussed the role of social support in helping them.
Three patients elaborated on this topic. One patient discussed how she was able to confront her
illness after her social support began to encourage her while two other patients discussed how
social support is important but lacking in their cases which negatively affected their treatment
experiences as they experienced loneliness during their treatment. One patient discussed the
issue of how many Latinas here leave their families in Mexico and thus have no family here to
support them. They have few friends and feel alone so providing patients with additional social
support would be helpful and would improve their satisfaction with their care. Another patient
discussed how she felt rejected by her significant other because he was afraid of her illness.
Therefore, she lacked social support initially but received social support from him once he was
not afraid anymore, which helped her to cope better with her illness.
The topic of spirituality was discussed as a coping method that helped provide a positive
treatment experience for patients. Patients used spirituality to accept their illness and their


46
bodies. In particular, four patients discussed this topic as a useful mechanism to help them cope.
They discussed having hope in God and accepting what God sends. One patient discussed going
to church and how religion positively helped her through her illness and thus to cope better with
the treatment experience. Lastly, one patient mentioned acceptance as a method that helped her
cope with her journey. She discussed accepting her body and accepting what was going on
during her treatment, taking things as they came.
Patients also discussed having a fighting spirit, using self-advocacy and reframing,
avoiding negativity, distraction, having hope, and included supporting other patients to help them
cope positively with their illnesses. Three of the patients discussed a fighting spirit which
ultimately meant that they would encourage themselves by believing that they would be fine
after treatment. One patient stated that no matter how much time the doctors say she had to live,
she would not spend her time crying or complaining, she would instead choose to fight the
illness. Another patient discussed not letting the illness consume her and her whole life. Three
patients discussed how they would cognitively reframe their situations which helped them to feel
better about their treatment experience. They discussed thinking about their illness differently
and tried to think of it like every other illness that needed to be healed. Another patient
described how she reframed her hair loss by comparing it to a tree and how the old leaves need
to fall out so the new would come out. While various patients used the methods above, there
were individuals who chose to avoid any negativity, another distracted herself by doing other
things, another patient discussed supporting others in terms of sharing her experience, and one
discussed how having a wig helped her move forward. Lastly, another concept that patients
discussed was the idea of holding on to hope. Four patients mentioned having hope in good
medicine and hope that having a healthy life afterwards would help them survive breast cancer.


47
One patient, in particular, discussed the concept of benefit finding when she was diagnosed
and how the diagnosis contributed positively to her overall experience. She stated, When they
gave me the diagnosis, it made me stronger, it gave me more strength to surpass and well look, I
can defend myself.
HPs also noticed that their patients do many different things to cope with their diagnoses
and illness which improved their treatment experience. One HP explained,
I see people that have really horrible prognoses and that are you know, drawing out all of
their strength and all their support system and you know everything that they have
learned throughout their lives and really you know, kind of persevering even in the face
of terminal illness.
Healthcare providers noted that patients use coping abilities which included family support,
social support, support groups, spirituality, and family protection to overcome treatment-related
challenges. Family and social support were discussed as the coping mechanism most often used
by patients followed by faith. Four of the HPs thought that family support was very helpful.
They would often hear patients seeking support from their family. One HP said that sometimes
the perception of family support is more important than actually having family support.
Although many patients use family support as a coping method, some patients also chose to
protect their families from their emotions. One HP felt that patients would not express their
depressed feelings in an appointment in order to protect the family from worrying. In terms of
other support, four providers mentioned social support as an aspect in patient coping that makes
their treatment experience more bearable. They felt that in addition to family members, patients
would also reach out to their friends, people in their communities, or people at the patients
churches. One HP stated that the hospital had a support group that patients attended. Three HPs
noted spirituality as important coping methods that Latina patients used throughout their
treatment. HPs noted that Latina patients have strong faith and that they are faith-based, thus


48
they tend to use church to cope both for the social support aspect as well as for the spirituality
aspect.
HPs also discussed patients using external locus of control, denial, medications,
avoidance, and acceptance as things that patients use to cope with their breast cancer and its
treatment. One HP discussed external locus of control in relation to how patients choose to leave
their fate up to God rather than choosing to act on treatment. In terms of denial, another HP
mentioned that sometimes patients are diagnosed but they choose not to follow through with
their treatment for an extended period of time causing their outcomes to be compromised by
unnecessary delays. Similarly, another HP mentioned that some patients choose to avoid the
topic. The HP said that patients want to know nothing, hear nothing about their cancer again.
One HP felt that patients want to avoid their cancer diagnosis so they choose to blame the clinic
or delay their treatment but really it is a way to avoid dealing with the cancer diagnosis. The
same HP also mentioned how patients use past illness experiences or the illness experience of a
family member to put their own illness into perception and feel better about their experience.
Although some of the coping methods caused delays in treatment, they were methods that
patients employed to help them move forward to act on and accept their treatment. For the most
part, patients seem to be satisfied that they use such coping methods to distract themselves or
avoid the topic, but those aspects did not seem to contribute to a negative treatment experience
for the patients, rather it seemed to help them produce other coping strengths to get through their
treatments.
Treatment Barriers. Educational and psychological issues are just a few barriers that
underserved patients have to overcome. They also experience a lot of treatment barriers that
affect their treatment journeys. Patients did not identify many treatment barriers directly. Only


49
one discussed the issue of transportation but the other patients did not specify specific treatment
barriers to their care aside from language and psychological concerns that led to their treatment
delays as discussed earlier. However, most of the HPs felt that treatment barriers negatively
impacted patients treatment experience. Six of the HPs discussed this topic, which included
barriers such as: transportation, immigration status, insurance status, competing responsibilities,
low social support, and a few cultural norms and religious beliefs.
Due to the patients low economic status and possibly their inability to express need
(language barriers, self-efficacy barriers, etc.), patients often have barriers to accessing care.
Most of the HPs attributed transportation as a large reason as to why patients cannot come to the
hospital for diagnostic appointments which causes delay in their diagnoses, as well as for their
treatment appointments. Insurance was another key point in patients not being able to receive
care in the past. In addition to insurance and transportation concerns, financial concerns would
be another reason patients did not seek care or treatment. Not being able to have healthcare
access could potentially cause patients to have a negative treatment experience. However,
patients in this study felt that their financial concerns were eased once they got into the system
due to providers finding them resources and financial support, which helped improve their
treatment experience.
Transportation, Insurance, and Access. Some of the things that hinder patients from
getting the proper treatment are due to difficulties scheduling their appointments and difficulties
paying for such treatment. Only one patient discussed transportation and financial concerns as a
treatment barrier. She discussed having difficulty getting radiation treatment at a site away from
the hospital and how it was difficult financially. She stated,


50
I wasnt working, my husband very little, and the economic situation in my house is, it
still is, but at the moment it was bad. It was difficult for me to find help to pay that
money [for treatment] because it was a lot of money that I had to pay for transportation.
In regards to transportation, five of the HPs felt that transportation was very difficult for
many patients. One HP described patients having to take multiple buses to get to their clinic
appointments. Another HP discussed the difficulty that some patients experience because it is
hard for them to drive, take a bus or taxi due to not having money to do so. With the financial
strains and inability to get to their appointments, lack of transportation could negatively impact
the patients ability to receive treatment. Another issue that two HPs mentioned was patients
lack of insurance. For example, one HP stated, most of the time they dont have any insurance
so how am I gonna make an appointment over here? The discussion of insurance was also
linked to immigration status. Two HPs discussed immigration status in relation to patients
having trouble with access to care. One HP discussed that many of the Hispanic patients that
they treat may be immigrants, who tend to be poor and unable to pay for their care. Another HP
discussed how paperwork and institutional barriers can be an issue that negatively impacts their
treatment experience. They stated,
Sometimes these patients here, they are not legal sometimes, and they need some kind of
support, but system works that way, so its sad to say, sometimes those patients, they give
up. They dont go to the doctors because they dont know how to pay.
Lack of insurance and the overall barrier of access to care can complicate whether patients
receive proper care. The process to overcome these barriers can seem confusing and may be
overwhelming which could also contribute negatively to the experience patients have when they
finally get treatment.
Competing Responsibilities. Another treatment barrier that affects patients treatment
experience is competing responsibilities. Patients and HPs identified patients commitment to


51
work and childcare responsibilities as reasons for patients to delay care. Although patients did
not describe finding child care as a specific barrier to their care, they noted multiple times
concerns and worries about their children and who would be able to take care of their children
when patients are undergoing treatment. These concerns appear to play a role in the patients
treatment delay which is likely to impact treatment outcomes negatively and consequently
negatively impact their experience. .
Three of the HPs felt that competing responsibilities negatively affects the treatment
experience that patients have. These responsibilities include the need to provide financially for
their family. One of HPs mentioned that they always see money as a problem for these patients.
Another stated, I think its just their socio-economic background. You know, I think, in
general, the Latino, the immigrant population here in the U.S., its not the people who are doing
well in the city. Its like very rural Hispanic patients. The HP discussed financial challenges
that patients have such as not being able to pay for groceries, thus they would rather not get care
for their cancer due to not being able to pay for the services. Two HPs particularly identified the
inability to take time off work as a barrier for treatment. One HP stated that it is difficult for
patients to follow through with their treatment recommendations when they have to work full
time to help support their families. This barrier could negatively affect patients treatment
experience by causing additional distress and worry regarding finances and their job, delays in
their treatment due to not getting time off work, and time constraints for work, family, and their
treatment that could affect their quality of life. Furthermore, the need for childcare was another
challenge. Two HPs described patients worrying about how their children will be taken care of,
who would pick up their children from school, and getting childcare during their treatment. An
HP acknowledged that low social support is seen when patients are unable to find others to help


52
them with transportation or childcare. It serves as an additional barrier on top of the competing
responsibilities that many patients have.
Patient informants did not identify work or childcare as specific barriers to delay their
diagnostic or treatment appointments, specifically. However, they did mention feeling
concerned and worried about who would be able to take care of their children when they
received their diagnoses. Such worries affected their treatment experiences negatively when
patients are constantly concerned for their children.
Religious Beliefs and Norms. According to HPs, other factors that contribute to
treatment barriers for patients include patients religious beliefs. One HP described how
religious beliefs could interfere with treatment. For example, patients who are Jehovah
Witnesses will not get any blood transfusion and the first thing that they request is to sign papers
requesting that if they need to receive blood, they would not want to get treatment. Religious
norms about behavior also appear to play a role. For example, Marianismo refers to
behavioral norms that have direct connection to Catholicism (named after the Virgin Mary or
"Maria), where women are expected to abide to feminine traits such as modesty, purity,
motherly, etc. Three HPs identified female modesty in particular as a barrier to patients
treatment. One HP noted that patient navigators have said that Latina women have problems
talking about their breast, least getting exams. Another HP stated that Latina women dont
touch their breast and Latina women and their husbands prefer a woman provider. A third HP
agreed and noted that older women have these cultural barriers where they have difficulties
examining themselves and having others examine their breasts for them.
One patient acknowledges the religious driven female modesty norm. She stated:
I think that like as Latinas, we have a taboo that we dont even know our own body. Um
always for times for question of religion, do not touch your body, it is a sin. Or simply


53
they dont talk to us about doing an exam ourselves. Of how to know okay my breast is a
little, it has a little ball. But what is that does not exist. Nothing is more important than
one knowing her own body. So I think that is the most important that we know that it is
okay to touch yourself and know what is the difference between one and another and
know that you are not going to hell because you are touching a breast or something
because they say, that is wrong.
Research Question 3
What specific healthcare system factors (e.g., system practices and logistics, treatment
procedures, healthcare providers roles) are likely to affect patients treatment experiences
related to initiating, adhering, and completing their breast cancer treatment? The main
healthcare system factors that appear to impact the patients treatment experience that were
discussed by both HPs and patients were the healthcare providers roles and communication
styles. The roles that contribute to a positive treatment experience included providers
willingness to offer information and to provide treatment. Other helpful roles that healthcare
providers served were offering psychological counseling, which positively influenced how
satisfied patients were with their treatment experiences. In addition, providers interactions with
patients and the ease with which patients get through the system affects patients willingness to
adhere to their treatment and their satisfaction with their treatment experience. Providers were
able to identify more healthcare system barriers than patients did during the interviews.
Healthcare Provider Roles. The healthcare provider role was discussed by six HPs.
Under this umbrella term, HPs included the themes of (a) emotional support and (b) assessing for
patients understanding, including explaining side effects, overcoming treatment barriers,
discussing cancer resources, inclusion of patients family, and the overall patient provider
relationship, as items that may affect patients treatment experiences. Four HPs discussed the
emotional support that providers give to the patients. They described situations in which they
needed to provide emotional support and how patients often rely on them for support. One HP


54
said, I think a lot of the Latino women rely on their primary care physicians, for help, whether
they need something to help them with their anxiety or even depression. Another provider
noted that sometimes providers are put into a counselors role and some do it well while others
do not.
When the HPs discussed healthcare provider role, they also discussed the importance of
assessing for patient understanding, discussing side effects, addressing treatment barriers,
providing cancer resources, and having ongoing patient-provider relationship as part of their role
that could affect how patients view their experience. They felt that by making sure that the
patients understand and receive the information for the topics above, they could positively affect
their relationship with the patients. One HP mentioned pushing other providers to go into a
deeper role and suggests that they ask patients about their personal lives so that the patient could
feel that the providers have an interest in them. Another HP brought up the topic of family
inclusion and how it was their role to include the family which helps the patients feel better
about their overall treatment journey. By taking time to help patients feel engaged and
respected, providers appear to contribute to patients positive treatment experiences. In addition,
providers rapport with their patients appears to help patients stay engaged during their
treatments and more satisfied with their providers.
On top of what providers include in their roles, the HPs also discussed availability. One
HP described patients having the doctors as a resource and that the doctors are always available
to have appointments when the patients need them. Another aspect of their role is to provide
patients with recommendations. Four HPs discussed their role in making recommendations for
patients in terms of lifestyle modifications, treatment, and referrals. The HPs discussed laying
out the options for patients and providing them with recommendations needed for their care so


55
that when patients return for their next appointment, they have the necessary tools/treatment that
was needed. For example, one HP discussed giving patient recommendations on exercises they
could do with their arms so that they will not have limited range of motion in their arms. If
patients do not do the exercise and come back after 6 months of getting chemotherapy, they may
have more limited range of motion which could affect their treatment experience. Another HP
mentioned providing emotional support and celebrating changes and lifestyle modifications or
else the patient would not stick with them. What the providers describe as their roles and the
resources that they provide can improve patients treatment experiences by providing them with
more quality care and the quantity of resources. The only caveat would be when patients
encounter barriers that keeps them from receiving the resources and when they cannot fulfill
treatment recommendations, which could alternatively create a negative treatment experience for
patients.
Healthcare Provider Communication. As HPs discussed, they do many things in their
role but those things come down to how well they can communicate with their patients. Most of
the patients also discussed the topic of communication with their healthcare providers. Overall,
patients felt that they were well supported by their providers and that their providers discussed
what was needed with them, creating a positive treatment experience for patients. Specifically,
five of the patients opened up about their experiences with their providers. With the exception of
one patient who described getting her diagnosis and treatment options from a nurse rather than
her provider, the other patients said that they received their diagnoses and treatment options from
their doctor. One patient described how the doctor provided her with her diagnosis and then
provided with her with information about her illness. Another patient stated,


56
So if the doctors tell you or what it is they recommend for example, they themselves
gives you advice, and dont worry [about what] this is going to be, this will happen to
you..and that is what I like the most.
Another patient discussed how providers communicated with her about including her family and
spiritual support as those aspects were important to her. Another patient described how her
doctor advocated for her by getting her in for appointments and getting results done quickly. She
also stated that all the doctors and nurses attended to her well. Two other patients agreed that the
providers treated them well and were helpful to them. Providers effective communication
contributes to patients having a positive experience because it helps them feel comfort, which
further increases their satisfaction with their care as well as their willingness to adhere to their
treatment plans.
HPs also mentioned healthcare provider communication as an important system factor
that affected treatment experience. Five HPs discussed communication topics including showing
empathy, being more detailed, providing individualized attention, and providing incremental
information as crucial elements to helping patients understand their illness. Three also discussed
how the provider language could be an issue as patients may not completely understand what the
provider is trying to communicate and three HPs also emphasized how poor communication
between the providers and the patients could affect outcomes. For example, one HP stated that a
nurse may tell a patient that they need a lumpectomy but the provider found that the nurse did
not provide a full explanation to the patient and did not tell them that they need radiation
treatment thus painting a different picture for the patient. From the provider perspective, if
providers could attain good communication skills, patients would be able to develop a closer
relationship with the provider and would thus feel supported within the hospital system and


57
follow their treatments closer which could build upon a positive treatment experience for the
patient.
Language can become an issue that negatively impacts the patients treatment
experiences. As discussed earlier, language barriers from the patients point of view could create
access issues. From the providers perspective, language barriers could cause
miscommunication and cost both the patients and providers unnecessary time. When there is a
language barrier and family members cannot serve as interpreters, providers would sometimes
have to use interpreters. Only one patient described needing a professional interpreter to
communicate, particularly in her case, in a support group, but aside from her, the other patients
did not discuss the role of an interpreter. The specific role of an interpreter was also discussed
by six of the HPs. A couple of the HPs discussed providers relying on translators to help them
communicate with patients. Although interpreters are available, four HPs explained the
difficulties with using interpreters within the system. They discussed having lost time waiting
for an interpreter, information inequity, misinterpretation, and sometimes the interpreters are
unavailable which can negatively affect the patients treatment experiences. In addition, patients
and providers inability to communicate well can cause patient distress and confusion, as well as
extra time and effort added to the patients appointment. An HP explained the difficulties,
It depends a lot, how long you waited for that translator to come, right? Because then you
lost like fifteen minutes of your visit time waiting for a translator, in the meantime,
youre trying to do other things, medications, prescriptions, physical exams and stuff like
that, but it eats out of the encounter visit and then it depends on the quality of the
translators. We have translators that are fabulous but then sometimes if they are busy or
its the weekend and theyre not available, you use the telephone and something that
telephone is terrible. Ive heard a lot of complaints about the telephone translators being
really, really bad and then you know theres misinterpretation, so its just not good.
Interpreters for patients can create a positive treatment experience just by being able to
communicate to the patient what is going on with their health and treatment. However, if the


58
interpreter is unavailable or misinterprets the information, patients may not adhere to their
treatment plan as mapped out by the provider and the patient may not feel supported by the
system which would negatively influence their treatment experience.
Patient Navigator Roles. Many of the patients discussed how patient navigators helped
them. Four patients stated that their patient navigator helped them in general and two patients
discussed how the patient navigator provided them with emotional support like giving them
advice. Patient navigators seem to contribute to a positive treatment experience for patients as
they often help patients overcome barriers and offers the patients social support when it is
needed.
The role of a patient navigator was discussed, separately, in detail by six of the HPs.
Patient navigators play a large role in helping patients overcome barriers and providing
resources. Two of the HPs discussed how patient navigators help address patient barriers,
particularly with the issue of transportation, insurance, reminders for appointments, providing
places for resources and educational materials, and coordinating the care for patients. Three HPs
also discussed how patient navigators offer emotional support, after-hours support, and
encourage family support. Two HPs discussed patient navigators providing referrals for mental
health needs and referrals for places that provide care in Spanish. Although the patient navigator
role is helpful such as assisting with patient-provider communication, they also have limitations.
For example, one HP stated,
If they [the patients] were English-speaking, they would get the call from the doctor,
from the nurse, explaining you know, if there are any questions that arises from the
whatever information you tell them, we deal with it right away. Where, if the navigator
is just passing along information, they dont have the ability to ask back.


59
HPs provided insight to how patient navigators play a large role in helping patients and making
sure that they receive top quality care, which can positively affect the patients treatment
experience.
Logistic Concerns. Logistic concerns played a large role in patients negative treatment
experience because patients may not receive the utmost amount of resources that they need due
to limited time, space, and resources. While most HPs noted those difficulties, patients
expressed satisfaction and a positive treatment experience with the resources that they received.
When patients discussed the hospital resources, they discussed how the hospital would help
financially with barriers, provide resources, and support. Three patients discussed financial
support specifically. One patient said that she told her patient navigator the following: I think
that the people I have met here at the hospital have helped me so much, economically and
emotionally, I tell her they are people, they are angels that God put in my path. The other
patients echoed similar statements saying that the hospital helped them economically and with
their medical expenses. Another patient also listed two other resources including support from a
volunteer who transported her every day for treatment and also having the opportunity to meet a
breast cancer survivor who worked at the hospital, which provided her with support. The patient
stated, She was like an example to me. A great strength that I felt like she gave me. Seeing she
was well, that was what helped me. The resources that were available helped patients develop
more hope and empowerment for their care.
Other patients discussed the written cancer resources and support groups that the hospital
provided. Four of the patients discussed how written materials were available and providers
gave them a lot of materials. One patient said that all of the materials she received were in
Spanish while another patient described a need for more low literacy materials. One patient


60
noted that she received a lot of materials but would get nervous upon receiving them. Another
patient described the hospital having support groups and while she attended to help encourage
others through her story, she also said that the group helped her, as well. This patient also
identified a need for psychological services for family members in terms of resources when she
was asked what other resources would be helpful. Although some materials and psychological
services are available, not having the resources or the appropriate resources could lead to
frustration and increased worry or misunderstanding for patients. These components could lead
to dissatisfaction with the healthcare system and negatively impact patients treatment
experiences.
One HP discussed how their setting had a large wait time until a patient could book an
appointment, but since the system has improved, patients are able to book the next available
appointment now where they went able to easily in the past. In addition, staff may also not be
able to be of help due to availability and language barriers. Resources were also a logistic
concern for many of the providers. They felt that the written resources may not be easy to read
or even in the appropriate language. Two HPs discussed having limited resources and
educational material, particularly those that were of an appropriate literacy level. Although four
of the HPs stated that there are available resources for patients to use including written material
in Spanish and internet resources, they reiterated that some material are not at an educational
level for the patients. Additionally, two HPs also noted that the resources, particular the
resources for mental health may not be very good quality. A lack of appropriate materials could
limit the quality of resources and the care that Latina Spanish-speaking patients receive during
the course of their treatment.


61
The systematic factors also included conversations about the difficulties with
psychological referrals and services provided to these patients as there may not be psychological
services that are language appropriate. Five of the HPs expressed the concern of unavailable
psychological services with two HPs saying that there are only English-only mental health
providers. Even with interpreters, one HP noted that sometimes an interpreter is not preferred.
Three HPs also described other barriers in obtaining psychological services for patients which
includes immigration status, financial concerns, and insurance status. Although most of the
patients did not receive psychological services, many described using their providers as a source
for psychological needs. Providers pointed out that services are not always readily available and
this could negatively impact how patients view their overall comprehensive care.


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CHAPTER VI
DISCUSSION
Low-income Spanish-speaking Latina breast cancer patients have multiple complex
factors that contribute to the disparity in cancer treatment benefits (National Institute of Cancer,
2008). The overall goal of this study was to understand how underserved Latina breast cancer
patients experience their treatment considering the multiple and complex social disadvantages
that they face. Patient interviewees in the study shared their experiences as they went through
their breast cancer diagnoses and treatment. In addition, they discussed individual factors that
helped or hindered their care as well as institutional factors that helped or hindered their care.
HPs also provided their views on how the process patients go through when diagnosed and
treated for breast cancer can affect how patients perceive their care. Furthermore, they discussed
patient factors, their role as healthcare providers, and how the healthcare system can affect the
care of their patients. Overall, this study explored how patient factors, system factors, and the
process of undergoing treatment determine how patients perceived their treatment experiences.
Generally, patients appeared to be satisfied with the care that they received. However, their
backgrounds, the hurdles that caused treatment delays, psychological issues, and treatment side
effects seem to affect their overall treatment experience. For the most part, patients and HPs
discussed similar topics and agreed on the factors that contribute to treatment delay. However,
HPs mentioned more access and treatment barriers while patients shed more light on their
strengths and strong coping mechanisms that helped them get through their treatment.
The social disadvantages that affect a large majority of underserved Latino/as such as
lack of insurance, low income, and immigration statuses lead to difficulties in accessing care and
receiving timely and quality treatment (Ashing-Giwa et al., 2006; Doty, 2003; Susan G. Komen,


63
2013). Without the ability to access care, delays in treatment may occur that may result in
patients receiving treatment when their breast cancer is in a more advanced stage, having a lower
5-year survival rate, and being at a greater risk of death (Forbes et al., 2014; Jung et al., 2011;
McLaughlin et al., 2012; Smith et al., 2013). In addition, economic hardships and fear of
diagnosis and treatment affects the individuals quality of life (Nedjat-Haiem, Lorenz, et al.,
2012).
Few patients discussed access difficulties directly as a factor that affected their
experience. In fact, they noted that when they had financial concerns, the hospital was able to
provide services. However, HPs differed from patients in that they viewed financial concerns
and undocumented status as factors that greatly affect the patients ability to access treatment.
Transportation barriers was a common concern among most HPs. They were concerned that not
having transportation and feeling too ill to take the bus can affect patients getting adequate care
(Kingsley & Bandolin, 2011). Many providers felt that transportation concerns contributed to a
negative experience for patients particularly those who felt additional financial concerns because
of transportation needs. Although patients did not discuss their hardships in access to care
directly, in other studies, patients have felt that they received differential care due to their
ethnicity, immigration status, and financial status, which affected their access to care and
treatment decisions (Ashing-Giwa et al., 2006). Patients in this study may not have had that
experience which may be due to the setting that is geared towards treating patients of their
similar backgrounds. However, the fear of getting differential treatment may have deterred them
from getting preventive care as well as delayed their decisions to go to the doctor and receive
treatment. By acknowledging and addressing these factors, such as having patient navigators to
help patients go through the healthcare system more smoothly and hospitals and clinics having


64
more outreach in the community, patients may be more able and more willing to partake in their
treatment (Kingsley & Bandolin, 2011), which would likely provide them with a more optimistic
treatment experience. By facilitating preventive care that is easily and timely accessed and by
providing information about resources, Latina breast cancer patients are likely to have less
concerns and to feel more satisfied with their care. Additionally, if the system could relive
healthcare access barriers, Latina breast cancer patients may receive preventative care and
treatment sooner, which could ultimately lower breast cancer mortality rates and improve these
patients survival rates through early diagnosis and treatment.
Similarly, low education, low literacy, low cancer literacy, and language barriers can
negatively affect treatment experiences. These factors can contribute to patients not having a full
understanding of their treatment options and may negatively affect patients ability to make well-
informed treatment decisions (Maly et al., 2010). In this study, although patients did not address
education issues directly, Latinas who demonstrated a lack of understanding and language
barriers appeared to defer to their providers and family members in terms of their treatment.
Although some patients are satisfied when their providers helped them make their decisions, the
patients who showed overall satisfaction were the ones who better understood their illness and
their options. For most of the patients, they felt satisfied having their providers tell them to opt
for certain treatment options, and on advising them on what to do for their particular prognostic
situation. Patients who are given a choice in their treatment tend to have improved physical
functioning, reduced anxiety and depression, higher quality of life, and better psychological
adjustment at post-visit follow-ups (Arora, 2003; Butow et al., 1997; Fallowfield et al., 1994).
Even though some of the patients in the study deferred to their providers for treatment decisions,


65
those who received options felt better about their care and reported feeling less anxiety and
depression.
In addition, patients and providers discussed language barriers which also led to
dissatisfaction with the patient-provider relationship, with the resources that patients receive, and
with the process of getting care (Molina et al., 2014). Latinas who only speak Spanish tend to
have a worse experience than those who speak English (Escarce & Kapur, 2006). The HPs
acknowledged language barriers as a factor that may delay treatment and limit resources as well
as a factor that could create a difficult treatment experience for patients. However, the patients
in this study felt that they had a good relationship with their providers regardless of their
language barriers, which may be due to patients having family members as interpreters and
providers being able to speak to them instead. Although family members sometimes served as
interpreters, it is less than ideal to have family members as interpreters since they are not
medically trained and may not be able to describe the patients illness and options to the patients
as thoroughly and as accurately as a trained medical interpreter would be able to do. They may
miss pertinent information regarding the patients options and treatment plan and they may also
misinterpret the information given to them, thus causing more confusion for the patients.
Additionally, although Spanish-speaking Latinos tend to report having a worse
experience than white patients, they also give higher global ratings to their physicians and
healthcare plans than white patients. This may be due to their low expectations of the healthcare
system or due to a disposition to defer to their providers (Escarce & Kapur, 2006). Such
dynamic may demonstrate that even though language can play a large role in patients care
satisfaction, the relationship with their healthcare provider can also improve patients perceived
treatment experience. Even though education, literacy, and language barriers exists, providers


66
can overcome these obstacles by educating the patient on their disease, providing them with
resources that are appropriate for their level of education, literacy, and language, and using
medically-trained interpreters or family members to overcome language barriers. Providing
these resources supports patients to have a more positive treatment experience and to feel that
their providers care about them which would also provide more hope and improve the
communication with their providers. Hospitals and clinics can also increase their bilingual staff
and interpreters to provide better services to their monolingual patients. Changes at the system
level could improve by removing language barriers for patients, thus creating a more comfortable
and inviting environment for all patients, but particularly for medically underserved patients.
The discrepancy between patients and HPs views on these topics may be due to several
reasons. One reason may be that HPs have more experience in the healthcare setting and overall
healthcare system, thus they can identify the treatment experience of a majority of the patients.
Also, due to the many years and patients they have treated, providers are more likely to know the
need and availability of resources as compared to patients who have only had one experience and
may not know the various resources that could be beneficial to them. Furthermore, the HPs may
be from different socioeconomic backgrounds and may have a different expectation of the
standards of quality care that patients could receive. Patients on the other hand may not have the
same expectations as they seem very appreciative of the resources and financial assistance that
was provided to them in the context of very low socioeconomic status.
Cultural health beliefs and gender norms should always be considered in patients care as
cultural beliefs can influence how patients appraise their illnesses and perceive their treatment
experiences (Katz et al., 2005). Latina patients have cultural beliefs about their diagnoses that
are fatalistic in which may influence a negative appraisal of the expected treatment outcomes.


67
However, they also rely on cultural beliefs and spirituality to cope with their illness which appear
to improve their treatment experience. HPs and patients both described patient factors such as
self-advocacy, but they differ in their views on the extent to which patients practice it. HPs felt
that Latinas have trouble advocating for themselves due to cultural paternalistic norms, which is
why they tend to defer to their providers. Patients on the other hand felt that they do self-
advocate when they believe it is needed. Those who advocated for themselves appeared to have
a sense of empowerment and were more satisfied with their treatment experience as they held
some control over their illness. Clearly cultural factors can affect patients treatment decisions
and influence how patients appraise their experience. Providers who understand and incorporate
cultural factors can assist patients to adopt positive coping methods to overcome the anxiety and
fear that often accompanies a cancer diagnosis. Thus, cultural factors should always be
considered when treating ethnic minority populations (Buki et al., 2008; Katz et al., 2005).
Acknowledging patients cultural beliefs and norms is important to make patients feel respected
and understood. Including as many influential cultural beliefs can also help patients have more
hope and promote better communication and relationship with their providers. By creating a
culturally tailored program for patients that acknowledges their cultural differences and
facilitates interacting with patients in a culturally appropriate manner, healthcare providers are
likely to contribute to improved patients satisfaction with their treatment care.
Childcare and concerns about children were other topics that were discussed. Childcare
difficulties is a large factor that deters undeserved patients from seeking and continuing their
care which ultimately could contribute to a negative treatment experience due to the delay in care
(Kingsley & Bandolin, 2011). Indeed, many patients discussed concerns about their children and
who would be able to watch their children while they receive treatment. HPs observed this


68
concern as well and that it has a negative effect on the patients treatment experience. HPs noted
that lack of childcare sometimes reflects the low social support that patients have to assist them.
By working with patients around their schedule, patients may have one less concern to worry
about and it may help them feel more satisfied with their care. Although some studies have
discussed childcare as an obstacle for cancer patients, very few offer suggestions on what
patients can do to overcome their worries and logistical concerns related to a lack of childcare.
This may be an area for patient navigators and behavioral health specialists to intervene and help
patients with this treatment barrier. Since the patients discussed how their family is typically
involved in their care, perhaps providers can help patients identify family members, friends, or
community resources (e.g. church) to help with childcare needs to alleviate their worries and
facilitate adherence to treatment.
Culturally, Latinas also hold strong familismo values, which is a value of family-
centeredness (Ramirez et al., 2014). This value was shown when patients discussed concern
about childcare, but this value applied to other areas as well. Patients highly valued
incorporating their family members into their treatment. Patients and providers both
acknowledged that family members were an important aspect of patients making their decisions
and also receiving social support. It is of importance to allow family support as it is linked to
emotional well-being and treatment adherence (Ashing-Giwa et al., 2004). Thus, providers need
to understand and incorporate family values, the role that women play in their households, how
family motivates the patients, as well as have an understanding that the patients may view
themselves as a burden to their family, in order to promote their Latina patients treatment
completion and satisfaction. For example, by enlisting the patients family support, patients may
have more courage to proceed with their treatment and to make decisions, better understand their


69
treatment through a family interpreter, and more emotional support as they go through the
different stages of cancer treatment. Although encouraging social support from family can be a
positive aspect, it also important to provide patients with additional support if they choose to not
rely on their family members for support, especially since some patients reported that they did
not want to be a burden for their family members. Furthermore, having multiple opinions from
family members may contribute to confusion when patients are treated, thus it is of importance
that providers be aware of how family plays a role in the patients care and how best to
incorporate their assistance in the patients treatment.
In addition to family support, a good patient-provider relationship was discussed
throughout this study. A key point is that if providers could successfully address patients needs
and concerns, then they are likely to reduce disruptions in patients quality of life (Arora, 2003;
Arora, 2007). Patients and providers both recognized the importance of the relationship as the
relationship provides patients with strength and support. A positive relationship provides a
positive treatment experience for patients and satisfaction with the care that they are receiving
despite negative factors that can affect their overall experience. Providing patients with
information, respect, and empathy, can help patients assert what they need and improve the
quality of care that patients receive.
The patients treatment journey was often characterized as a rollercoaster as patients went
through ups and downs in their diagnosis, manage their side effects, and cope with their disease.
As patients were diagnosed, many felt fear and had concerns which caused them to delay their
treatment. However, this study also showed that for some patients the confirmation of their
diagnosis helped patients feel empowered and to move forward with their treatment. This
concept is referred to in the literature as benefit finding, which is defined as the perception that


70
the experience of being diagnosed or treated for a disease contributed positively to the patients
life (Tomich & Helgeson, 2004). By seeing their situation in a positive light, patients may have
a more positive treatment experience because their coping mechanism may help them improve
their quality of life.
Beyond the diagnosis, patients also discussed dealing with multiple side effects that
occurred during their treatment which all negatively impacted the patients. Hair loss and
mastectomies were described as being painful but they also were related to depression, which
may make patients experience with their illnesses even more negative. In addition to having
psychological distress due to treatment side effects, patients may have more distress after being
diagnosed, particular those who are younger and less acculturated (Maly et al., 2010). Patients
and providers both recognized depression, anxiety, and fear as the main psychological concerns
among this population of women, but they also noted that most patients at some point feel
overwhelmed during their treatment. This overwhelming experience may impair the patients
ability to absorb information after they are diagnosed and their ability to identify particular
feelings. Intense affect may contribute to a negative experience for patients as cognitively they
are less likely to remember what their providers say to them. Being overwhelmed may also lend
to feelings of anxiety. The side effects of getting treatment greatly contributes to a negative
treatment experience. Thus, providers can help patients by helping them manage the side effects
medically and behaviorally.
How patients chose to cope with their illness and side effects largely affects their
perceived treatment experience. Patients used multiple methods to cope with their illnesses
including using their faith, positive thoughts, reframing thoughts, and support which has been
shown to be helpful among cancer patient populations (Culver et al., 2002; Nedjat-Haiem,


71
Lorenz, et al., 2012). In this study, one notable method of coping was patients ability to use
their fighting spirit to fight back against their illness which went along with benefit finding
from the experience. Patients developed a source of strength that made them want to fight their
disease and not let it affect their daily lives. This coping method helped improve their quality of
life during treatment and provided them with a positive outlook on their disease. The other
notable method of coping was using their family members for social support. The majority of
patients and providers discussed the importance in having family members supporting the
patients. Relying on family contributed to a positive treatment experience. Although many of
the patients employed their own coping methods and found positive ways to cope, many still
experienced loneliness, distress, and fear. Consequently, having mental health resources may
help patients in these cases have a better treatment experience overall.
Overall, a breast cancer diagnosis, delays in treatment, lack of healthcare access, system
barriers, and side effects of breast cancer treatment all contributed to a negative treatment
experience for patients. However, many other aspects including family support, positive coping
methods, appropriate resources, and good communication between the patient and the provider,
all helped patients have a positive perspective on their treatment experience. Patient and system
factors should all be considered and treatment should be tailored for Spanish-speaking Latinas to
ensure that patients have quality care in light of the resources available to them. Many of the
barriers can be addressed if providers across different disciplines can work together to ensure the
treatment has the qualities above to ensure that patients have positive outcomes and improved
treatment adherence, quality of life, satisfaction with their quality and quantity of care, and
assistance with overcoming treatment barriers.


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Limitations
The information learned from this study provided valuable perspective from healthcare
providers who are interested in closing the disparity gap for Latina breast cancer patients and
from patients who were affected by breast cancer. Although the insight is pertinent to the
understanding of the treatment experience of Spanish-speaking Latinas, there were several
limitations to the study. First, the study could have had potential researcher bias that could occur
during the development of the interview questions and the interpretation of the interview data.
However, researchers strived to standardize the coding procedures as well as the interpretation of
the results during the data analysis phase. All of the data was coded by two groups of researcher
and was combined and reviewed for consistency and clarity. The second limitation of the study
is how the study defined the term Latina. The study did not take into account the nationalities
of the patients and did not consider within group differences (e.g., age, acculturation,
generation). Also, the study did not take into account the different stages that patients were
diagnosed with and how many months/years it has been post-treatment. Since the patients in the
study were survivors, the recollection of their experience may have resulted in recall bias. What
they recall now might not be the experience of what they felt during their actual treatment, which
could serve as another limitation. Lastly, this study was specifically looking at underserved
Spanish-speaking Latinas and cannot be generalized to other populations. It may also be
different for Latinas who also speak English and who are not considered underserved or
underinsured.
Contributions and Future Directions
This study contributed to a deeper understanding of the treatment experience from the
perspective of both healthcare providers and the patients. It shed knowledge on the difficulties


73
that both groups experienced during the treatment process and shed light into the gaps that still
exist. With the limited amount of information on this population, this study highlighted the
experience of underserved Latinas and the need for a deeper understanding of this population and
what needs to be done in order to improve their quality of care. In addition, the results from this
study could be used to provide recommendations to improve care in safety net hospitals for this
population as well as guide intervention programs to provide similar patients with more access,
more resources, and more mental health services.
Future research should build upon the knowledge and recommendations provided in this
study. With the Affordable Care Act in place, more research should be focused on how more
access to healthcare effects the treatment experience of patients. Studies could also focus on
mental health services for this population to alleviate provider burden on having to have multiple
roles as well as providing patients with specific coping strategies to handle their illness. A
program that could incorporate strategies to over treatment barriers and patient characteristics as
described in this study, could potentially improve outcomes for this population as well as other
underserved populations where health disparities occur.


74
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APPENDIX A
KI and Patient Interviews
KI Interview Questions:
We are designing a program to help Latina breast cancer patients better understand their
diagnosis and treatment. Such a program will provide psychological support and aid them with
coping strategies in order to improve their quality of life. We would like to hear your insights
about what resources are currently available for this population, what needs still remain, and how
these needs could be best fulfilled.
1. In your opinion, what are the most salient educational needs regarding breast cancer
diagnosis and treatment that Spanish-speaking patients seem to have?
Probe if not mentioned: Do you think that they clearly understand what the different
diagnostic stages mean and its implications?
Probe if not mentioned: Do you think that they clearly understand what their treatment
entails and how to follow it properly?
Probe if not mentioned: What resources are currently available for Spanish-speaking
breast cancer patients to educate them about their diagnosis and treatment?
2. Based on your experience, what are some of the most salient mental or psychological barriers
that Latina patients seem to encounter while undergoing breast cancer treatment?
If not mentioned, probe:
a. How much do these patients seem to struggle with distress or depression?
b. Does anxiety or stress seem common and how do they manifest?
c. Is fear a common occurrence and what does it seem related to?
d. Do concerns about body image seem to be an issue?
e. How do Latina patients seem to cope with mental or psychological struggles?
3. What are the gaps or holes in the current psychological or mental health support for Spanish-
speaking breast cancer patients?
4. In your opinion, what are some social or cultural barriers that seem to interfere with Latina
patients ability to follow treatment recommendations?
If not mentioned, probe:
a. What family dynamics manifest while patients are in treatment?
b. Does communication with and among family members seem to be an issue?


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c. Are there any health beliefs that seem to interfere with treatment? (e.g.,
fatalism, spirituality/religion, alternative treatments)
d. What cultural differences play role when providers interact with these
patients? (e.g., polite agreement, body modesty, time orientation).
5. Given the language barrier with Spanish-speaking Latinas, what communication challenges
seem most common and how do these tend to interfere with treatment?
6. Are there any particular recommended lifestyle changes that these patients seem to have
difficulty adapting to during the course of treatment? (For example, modifying their diet,
exercising)
7. Would it be feasible for patients to talk with a counselor on the same day they attend breast
clinic?
Probe if yes:
a) How feasible is it for patients to stay after their appointment in the breast clinic?
Probe if no:
a) What other time would be feasible for patients to talk with their counselor?
8. At what point during treatment should psychological support begin and end?
a. At what point along the cancer care continuum would an intervention be most
effective?
9. In your opinion, how would providing psychological or mental health support to these
patients affect treatment outcomes?
Probe if not mentioned: Do you think patients would adhere better to their treatment?
Probe if not mentioned: Do you think patients would be more satisfied with their care?
10. Is there anything that you would like to add or think is important for us to consider when
implementing an intervention to provide psychological or mental health support to Latina BC
patients?
Patient Interview Questions
We are creating a program to help women like you to better understand breast cancer and its
treatment. Such a program will give them emotional support and teach them how to better deal
with this difficult experience. We would like to hear about your experiences while you were


83
going through treatment. We want to know what would have been helpful to you during that time
so we can include it in this program.
1. Think back to when you were diagnosed with breast cancer, what were some of the most
helpful resources provided at the hospital to help you understand your diagnosis and
recommended treatment?
Probe if not mentioned: Did you feel that you had a good understanding of what your diagnosis
meant?
Probe if not mentioned: Did you feel that you had a good understanding of what your treatment
entailed?
2. What aspects of your diagnosis were less understood or were unclear to you?
Probe if not mentioned: Did you have anyone explain what you did not understand?
3. What aspects of your treatment were less understood or were unclear to you?
Probe if not mentioned: Did you have anyone explain what you did not understand?
4. Looking back, are you satisfied with your treatment decision?
a. Is there anything you wish would have been different about your treatment
decision?
b. Did you feel comfortable discussing multiple options with your doctor?
5. Please tell us, which aspects listed below were most difficult for you as you went through
your breast cancer treatment? And what was particularly difficult about these?
a. Was it difficult to follow the treatment plan and why?
b. Was it difficult to cope with the diagnosis and why?
c. Was it difficult dealing with treatment side effects and why?
d. Was it difficult dealing with any health care personnel and why?
e. Were there any other aspects of your diagnosis or treatment that were difficult to
you that we did not mention?
6. We would like to know if there was a specific time when your emotions or feelings
seemed overwhelming to you or got in the way of treatment. Can you please tell us when
this was and how you felt?
Probe if not mentioned: Did you ever feel worried, sad, tearful, or discouraged?
a. How did you deal or cope with these feelings?
7. Did you ever discuss any cultural factors that were important to you with your doctor?
(e.g., family inclusion, use of complimentary treatments, spirituality, etc.)


84
a. Why or why not?
b. Is there anything you wish your doctor had known about your culture during your
treatment?
8. From your experience as a Latina, is there anything that would be especially important to
consider or include in a program designed to educate and support Latinas going through
breast cancer treatment?
9. We would like your opinion regarding the possibility of having a counselor to whom
patients could talk to about the various struggles that they encounter during treatment. If
you have had an opportunity to speak to a counselor....
a. Would you have preferred to meet with a counselor individually face-to-face
before or after your appointments or at another designated time? (Why?)
b. Would you have preferred to talk over the phone with a counselor? (Why?)
c. Would you have preferred to meet with a group of other Latinas with breast
cancer? (Why?)
i. Which of these methods would have been most useful to you and why?
10. If you had an opportunity to meet with this counselor, would it have been helpful to
discuss the common experiences and potential issues that women with breast cancer go
through in treatment?
If yes:
We are thinking about creating stories that illustrate these experiences and issues.
How would you have liked to learn about these stories?...
a. Do you think that you would have liked to listen to the stories on a CD or cassette
player?
b. Or, would they (you have) preferred to read these stories in a story book?
c. Would it have been helpful to have a chance to go home and reflect on these
stories before talking to your counselor about them?
11. Is there anything weve forgotten to ask that you think we should know about creating a
program like this?


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APPENDIX B
Patient Socio-demographic Questionnaire
Section I
1. Your age?_______[Years]
2. Your current marital status? [Circle one]
Never married Married Divorced Separated Living Partner Widowed
3. Where did you do most of your schooling? Latin America____________or USA_________
4. Place an X in the box that best described the highest level of education you completed:
Grade School High School College Post Graduate
1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4

5. Are you now employed? ________Yes_____No Retired? __________Yes______No
6. What is/was your occupation? ________________________
7. Do you have:
Medicare?____Yes____No Medicaid?________Yes____No Private insurance?_____Yes____No
8. Circle the range that best describes your monthly income?
Less than $1,000 $1,001 $1,500 $1,501 $2,000 $2,001 $2,500
More than $2,501
9. How many people live in your household?______________
10. How long have you lived in the United States?_______All my life________Years
11. What is your zip code?__________


86
Section II
1. When were you first diagnosed with cancer? month year
2. What type of cancer was diagnosed?
3. Did you have surgery? Yes No
4. Did you have chemotherapy? Yes No
5. Did you have radiation therapy? Yes No
6. Did you have biological therapy? Yes No
Section III
1. Do you speak ->
Only Spanish Spanish better than English Both Spanish and English equally well English better than Spanish Only English
2. Do you read ->
Only Spanish Spanish better than English Both Spanish and English equally well English better than Spanish Only English
3. Was your early life [childhood and teenage years] spent in>
Only in Latin-America Mostly in Equally in Latin-America Mostly in the Only in
Latin-America and the USA USA USA
4. Is your current circle of friends>
Almost all Mainly Equally Hispanics & Mainly Non- Almost all
Hispanics/ Hispanics/ Non-Hispanics from Hispanics from the from USA
Latinos Latinos the USA USA
5. In relation to having an Hispanic/Latino background, do you feel>
Very Proud Proud Somewhat Proud Little Pride No Pride


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APPENDIX C
Key Informant Socio-demographic Questionnaire
1. Do you consider yourself to be (check one):
Hispanic or Latino
Not Hispanic or Latino
2. Which of the following categories best describes you (check all that apply):
American Indian/Alaska Native
Asian
Native Hawaiian or other Pacific Islander
White
Black or African American
3. How long have you been working with Denver Health patients?______________
4. What is your medical specialty? _______________
5. For MDs: What year did you finish your residency program? __________
6. For RNs: When did you finish nursing school or advanced practice training (i.e NP)?
7. Gender: Male Female


88
APPENDIX D
Patient Navigator Socio-demographic Questionnaire
6. Gender: Male_____ Female___________
7. Do you consider yourself to be (check one):
Hispanic or Latino
Not Hispanic or Latino
8. Which of the following categories best describes you (check all that apply):
American Indian/Alaska Native
Asian
Native Hawaiian or other Pacific Islander
White
Black or African American
9. How long have you been working with Denver Health patients?______
10. Have you worked as a Patient Navigator before? Yes_ No_______
If yes, where have you worked as such before?_____________________
If yes, for how long have you worked as Patient Navigator?________
11. Place an X in the box that best described the highest level of education you completed:
Grade School High School College Post Graduate
1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4

12. Do you speak
Only Spanish Spanish better than English Both Spanish and English equally well English better than Spanish Only English
13. Do you read
Only Spanish Spanish better than English Both Spanish and English equally well English better than Spanish Only English


Full Text

PAGE 1

TREATMENT EXPERIENCES OF UNDERSERVED LATINA PATIENTS WITH BREAST CANCER by JENNIFER THUY NGUYEN B.A., University of Colorado Denver 2009 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Master of Arts Clinical Health Psychology 2016

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ii This thesis for the Master of Arts degree by Jennifer Thuy Nguyen has been approved for the Clinical Health Psychology Program by Kristin Kilbourn, Chair Evelinn Borrayo, Advisor Paula Espinoza December 18 th 2015

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iii Nguyen, Jennifer Thuy (M.A., Clinical Health Psychology) AYUDA: Acceptability and Feasibility of a Psychoeducational and Psychosocial Support Program for Spanish Speaking Latinas with Breast Cancer Thesis directed by Professor Evelinn Borrayo. ABSTRACT Little is known about how underserved Spanish speaking Latina breast cancer (BC) related outcomes. This study explored how underserved Latina BC patients expe rienced their treatments despite having multiple social disadvantages. Seven BC patients and seven healthcare providers involved with the care of BC patients were interviewed to better understand these system barriers that affects their care. Data was analyzed using ethnographic content analysis. Patients described their personal journeys from diagnosis through treatment, including their treatment decisions, logistical barriers, and personal barriers a nd concerns that negatively affected their experience. However, they also discussed the support they received from their family and the resources and services they were provided at their treatment facility, and how these contributed to a more positive tr eatment experience. Healthcare providers described access barriers, language barriers, system issues, and the lack of resources, as negative factors that contribute to patient experiences, but they also discussed their role as well as the patient factors that seemed to help create a positive experience for patients. Overall, patients were generally satisfied with the care that they received despite needing to overcome multiple barriers. Healthcare providers, on the other hand, described patient experienc es as a rollercoaster as patients go through their treatment journeys. Patients and providers discussed many similar topics with patients focusing more on their personal strengths and providers focusing on access and treatment barriers. Future studies sh ould explore

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iv how the treatment experiences of patients can influence treatment adherence directly as well as incorporate mechanisms focused on helping patients overcome treatment barriers and addressing patient characteristics in order to improve BC patien The form and content of this abstract are approved. I recommend its publication. Approved: Evelinn Borrayo

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v TABLE OF CONTENTS CHAPTER I. Additional Factors that Affect the Treatment Experience Patient Provider Relationship II. SUMMARY AND RESEARCH QUESTIONS III. METHODS Key Informa nts IV. ANALYSIS V. Research Quest Treatment Options and Tr Family Involve Treatment Side Effects and Provider Complementary Treatm Research Question .. 35

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vi 37 40 Coping Met Treatment Bar riers Transportation, Insurance, and Access Religious Beliefs and Norms Research Question 53 Healthcare Provider Communication Logistic Concerns VI. DISCUSSIO Limitati 2 72 APPENDIX A. KI and Patient Int ervi B. Patient Socio demographic Q u C. Key Informant Socio demograph i D. Patient Navigator Socio demograp hic Questionnai

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CHAPTER I INTRODUCTION Since the National Cancer Act was signed in 1971, significant progress has been made to increase cancer treatment rates and improve cancer patient survival rates, but decades later, cancer is still a leading cause of death within the United States. In 1999, a groun dbreaking report by the Institute of Medicine on the quality of cancer care in the United States described a wide gap between what could be construed as ideal and the reality of what patients actually experience with cancer (Seils & Schulman, 2003). A dec ade later, the Cancer Treatment Centers of America completed a survey that demonstrated similar findings showing a significant gap between the expectations that patients have for treatment and what they actually received (Cancer Treatment Centers of America, 2013). Even with the progress made in cancer treatment over the last few decades, not all groups benefit from the medical advances. The National Institute of Cancer (2008) reported th from cancer and its associated effects, including premature death Multiple complex and interrelated factors contribute to the disparity in cancer treatment benefits among underser ved groups, wi th lack of health care coverage and low socioeconomic status as being the most pervasive factors (National Institute of Cancer, 2008). It is concerning that even though the effects of these factors on cancer disparities are well understood, very little pro gress has been made to improve the participation and cancer treatment success rates for underserved patients and very little is known about their expectations and experiences when they are able to participate in cancer treatment.

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2 Breast Cancer Dispa rities among Underserved Latinas A group that is particularly underserved is low income Spanish speaking Latinas with breast cancer. Breast cancer is the most common cancer in women, no matter what race or ethnicity women are (Centers for Disease Control and Prevention [CDC], 2014). In 2014, 232,670 new cases of invasive breast cancer will be diagnosed in women and 40,000 women will die from breast cancer (American Cancer Society [ACS], 2014). Among Hispanic (Latina) women, breast cancer is the most common cause of cancer death, even though Latinas have lower breast cancer rates when compared to non Hispanic white women (CDC, 2014; Susan G. K omen, 2014). Additionally it is important to note that the incidence rates for breast cancer in Latinas are higher for women under the age 40 (Ashing Giwa, Padilla, Bohorquez, Tejero, & Garcia, 2006). Across multiple studies, Latina breast cancer patients also tended to present with more advanced disease, more adverse prognosis, higher risk of morta lity, and they seem to be diagnosed at a youn ger age than white women ( Dehal, Abbas, & Johna, 2013; Katz et al. 2005; U.S. Department of Health and Human Services (HHS) 2010 ). Although the overall mortality rate for breast cancer has decreased, the mort ality rate for Latinas has not decreased as much as for n on Hispanic women (Ashing Giwa et al., 2006). Latinas also have a poorer prognosis for survival rates when compared to their white counterparts (Susan G. Komen, 2013). Across the n ation, Latinas h ave an 83% five year breast cancer survival rate while non Hispanic W hite females have a five year breast cancer survival rate of 88% ( ACS 2012). Furthermore, Latinas are more likely than non Latina white women to receive a first course of treatment that does not meet the 2000 National Comprehensive Cancer Network Standards (Li, Malone, & Daling, 2003). Many factors contribute to the cancer

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3 subjective experie nces during treatment and how such experiences affect disparities in treatment completion and related outcomes (e.g., more advanced stage, lower 5 year survival, and greater risk of death). By exploring how various factors influence the subjective experie nces of underserved Latinas undergoing breast cancer treatment, future interventions can be tailored to review of the literature follows to understand the curre nt state of knowledge regarding the social determinants of cancer treatment disparities that affect medically underserved (i.e., uninsured, underinsured, low income) Latinas in the United States. Access to Care, Socioeconomic Status, and Language The canc er treatment disparities that low income Spanish speaking Latinas encounter can be attributed to multiple factors that include barriers to healthcare, low socioeconomic status, and socio cultural d isadvantages. Access to health care, which is often associated with lack of insurance and low income, is often o ne of the major factors that is related to the racial and ethnic differences in access to breast cancer treatment (Susan G. Komen, 2013). Hispanics (Latinos) have the highest uninsured rates of r acial or ethnic group within the United States ( HHS 2014). As the number of Latinos increase within the nation, so does the number of uninsured individuals (Doty, 2003). Two out of five Hispanic adults ages 19 64 were uninsured in 2000, as compared with 14% of whites (Doty, 2003). The HHS Office of Minority Health (2014) reported that in 2012, 29% of the Hispanic population was not covered by health insurance as compared to 10.4% of non Hispanic whites. Immigration status is likely associated with th e low rates of health coverage reported within the Hispanic population (Doty, 2003). Other treatment barriers among Latina breast cancer patients include citizenship status. In 2014, there were 11.3 million undocumented immigrants in the U.S. with Mexica ns making up about half of that population

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4 and only making 5.1% of the U.S. labor force (Krogstad & Passel, 2015). A large number of Latinas are undocumented immigrants who are either unemployed or low wage employed, making them ineligible for health insu rance (Ashing Giwa et al., 2006). The lack of health care widening the disparities that this population suffers related to morbidity and mortality outcomes. F urthermore, even though the Affordable Care Act has opened opportunities for many underserved populations in the U.S. to gain access to care, some underserved groups still struggle with getting access to care. This may be due to lack of information about the Affordable Care Act, or lack of resources to help them get insurance such as a lack of internet access, or undocumented immigration status that disqualifies them. According to the Commonwealth Fund Affordable Care Act Tracking Survey, the rate of unin sured populations such as Latinos remained high in states that had not expanded their Medicaid program. The rate was statistically unchanged, particularly for many states where large numbers of Latinos reside (Doty, Rasmussen, & Collins, 2014). In additi on, the survey noted that 30% of Latinos who speak primarily Spanish remained uninsured as compared to 19% of English dominant Latinos. Among Latinos who were eligible for insurance, only 50% of Latinos were aware of the marketplace, only 29% visited the marketplace, and the rates were even lower for Spanish speaking Latinos (Doty, Blumenthal, & Collins, 2014). Without proper health insurance, it is more likely that underserved Latinas will continue to experience delays in breast cancer diagnosis, treatme nt and follow up (Smith, Ziogas, & Anton Culver, 2013). Delays in treatment results in adverse outcomes for breast cancer patients such as more advanced stage, lower 5 year survival, a nd greater risk of death ( Forbes, Warburton, Richards, & Ramirez, 2014; Jung et al. 2011; McLaughlin et al. 2012 ; Smith et al., 2013 ).

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5 to such care. The 2012 U.S. Census Bureau showed that 25.4 percent of Hispanics in comparison to 11 percent of non Hispanic Whites wer e living at the poverty level (DeNavas Walt, Proctor, & Smith, 2013; HHS 2014) Unfortunately, even when they have health insurance, low income individuals may not be able to pay out of pocket expenses for additional care (Escarce & Kapur, 2006). According to the Agency for Healthcare Research and Quality (AHRQ) (2011), among low income Latinos, t he uninsured incur lower health care expenses but pay more total dollars out of pocket. They also noted that while many Lat inos are employed, they are not necessarily employed in situations where they can receive insurance for them and for their families. Without adequate income, many individuals will not be able to pay out of pocket for treatments and will feel the financial burden as they make treatment decisions. Some individuals will not go to a hospital unless they are having acute medical concerns because they cannot afford to pay for regular care ( Escarce & Kapur, 2006 ; Kingsley & Bandolin, 2011; Nedjat Haiem, Carrion, Ell, & Palinkas, 2012 ). By doing so, they may prolong their disease and in the case of breast cancer, their cancer may not be detected until the disease has progressed as they may not be getting mammography screenings early enoug h to detect the cancer ( Kingsley & Bandolin, 2011; Susan G. Komen, 2015 ). Additionally, research has suggested that some Latinas are likely to delay seeking medical attention even after detecting abnormalities in their screenings because they fear the possibility of getting diag nosed with cancer and the medical costs for seeking medical assistance, which would also further their delay in treatment. Due to Haiem, Lorenz, Ell, Hamilt on, & Palinkas, 2012).

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6 Underserved status also includes low education. Poor educational attainment is considered an additional obstacle to Latinos receiving timely and appropriate health complex healthcare delivery system, Kapur, 2006). Due to low education, some individuals may not be able to make well informed treatment decisions and may also not u nderstand what is occurring to them while in they are in treatment. With the lack of understanding about their treatment and consequent inability to make medical decisions, patients may experience their treatment differently and may rate their satisfactio n of the services differently compared to patients who have a better understanding of their cancer treatment. They may also have a poorer quality of life and treatment adherence if they do not understand their health status or information given to them du ring their treatment. An example of this was found in one study done by Maly, Liu, Leake, Thind, and Diamant (2010). The researchers found that women with higher educational levels were less likely to experience nausea than those with lower educational l evels. They suspected that women with more education may have had more resources to obtain information on preventing and treating nausea. Thus, low education and lack of insurance coupled with lack of understanding about their cancer treatment significan tly influence poorer outcomes for Latino patients within a complex healthcare system. proficiency. About 33% of the U. S. Latino population reports that t hey are not fluent in English and 74% of U.S. Latinos speak a language other than English at home ( HHS 2014). Those who primarily speak Spanish have more difficulty getting access to care, resources, and programs that can help them through their treatmen t (Buki Garces, Hinestrosa, Kogan, Carr illo & French,

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7 2008). The difficulty with language may lead Spanish speaking Latinos to have more problems communicating with their doctors (Doty, 2003), which may then lead to patients having less confidence and t rust in their doctors as compared with less than a third of uninsured English speaking whites. Moreover, Spanish speaking Latinos have more difficulty comprehending written prescription instructions and health information that they receive from the doctor offices, which could ultimately affect their satisfaction with their care as well as their ability to adhere to their treatment (Doty, 2003). Many Spanish speaking women would not be able to speak directly to their providers without a translator, which would limit their ability to ask questions and voice their concerns (Sheppard et al ., 2008). Multiple studies have found that language barriers between providers and their patients cause providers to order excessive medical tests and cause patients to ha ve a decreased use of primary care and increased use of emergency care without adequate follow up (Escarce & Kapur, 2006). Additionally, Spanish speaking Latinas tend to receive different treatments and to perceive their treatment experience very differen tly than did other cultural groups. Latinas who preferred Spanish were more likely to experience a delay of 3 months or more from diagnosis to surgical treatment ( Katz et al. 2005). For primarily Spanish speaking patients, language barriers can be a fru strating aspect in their care. When patients command of English is low they cannot communicate properly with their providers, understand results and medical instructions in English, or access available resources. The process could cause much frustration resulting in lower satisfaction in their care and affect their treatment decisions (Molina et al. 2014). In summary, language has a direct link to access of care, which as noted earlier, Spanish speaking individuals tend to have more difficulty getting into the health care system which would thus de lay their preventative

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8 screenings, diagnoses, and treatments. They also tend to receive different treatment and perceive their care differently when they prefer to speak Spanish. Cultural & Gender Factors Cultural factors should also be considered when understanding barriers to cancer treatment among underserved ethnic minority populations ( Ashing Giwa et al. 2006 ; Buki et al. 2008; Katz et al., 2005 ; Lopez Class et al., 2011 ). Although many studies discuss the importance of addressing cultural barriers, there is a shortage of literature on how cultural Cultural factors affect patients even before their treatment journey begins and it also serves as a gui ding script for treatment decisions. Cultural beliefs influence the way that patients appraise their cancer diagnosis (Buki et al. 2008) and shape the healthcare treatment that Latinas experience ( Katz et al., 2005 ). Similarly, socio cultural values and treatment decisions and adherence. Cultural values that appear particularly relevant include: respecto (respect), familismo (family centeredness), marianismo (high value of being dedicated wives and mothers), simpatia (formal fri endliness or kindness), fatalismo (fatalism), and dignidad (dignity) (Ramirez et al., 2014). experience include the belief in fatalism and modesty Among some Hispa nic/Latina women, early detection screening is of little value (Simon, 2006). That belief can potentially affect when the patient would get diagnos ed and what treatment options they would have. It may even affect their treatment adherence if they have the belief that cancer is a death sentence. Another example is the common belief that the touching of the breast is reserved for intimate

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9 partners, t hus having a male doctor touching their breasts may concern some Hispanic/Latina women (Simon, 2006). Again, this belief may lead women to have poorer experience during their screenings or treatment for their breast and may lead them to not feel comfortab le for follow up visits. These examples show a glimpse of how cultural factors may play a role in breast cancer treatment and how not addressing these factors could lead to poor treatment adherence and poor experience for patients. Although these factors are noted and recognized more and more as providers attempt to be more culturally sensitive, the complete role of cultural beliefs in the treatment process of breast cancer is still poorly understood. Gender identity and role also appear to be factors l adherence. The top two issues that are discussed most often in the literature is the role change that many women endure when they are receiving cancer care and the importance of their female organs (Kingsley & Bandoli n, 2011). During cancer treatment, many women in the Latino culture will experience a role change which means they go from being a caregiver to a care them r ather than them providing care which may create stress and strain on the patient and their family members (Kingsley & Bandolin, 2011). This role reversal in turn plays a role in how women decide their course of treatment and affects how they adhere to suc h treatment. Some women may feel uncomfortable receiving care and may struggle to make decisions, particularly if those decisions will likely interfere with their family responsibilities. In one study, breast cancer survivors viewed the gender role rever sal as a painful experience just as much as receiving cancer treatment (Collins, Villagran, & Sparks, 2008). In addition, it is also common for many Latinas to not follow up with their treatment regimens when they perceive their role change affecting thei r ability to function and fulfil l family duties (Kingsley & Bandolin, 2011).

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10 The possibility of losing their breasts is also another concern that worries Latina women. Latinas tend to experience a variety of negative emotions over losing their breasts, a s these represent to them their ability to fulfill their role as a mother and their id entity as a woman (Ashing Giwa et al., 2006; Kingsley & Bandolin, 2011). The topic of body image not only can influence treatment decisions, it is also something that many women have to discuss and experience changes in during their course of treatment. In a study done by Ashing Giwa et al. (2006), breast ca ncer survivors expressed feelings of sadness, embarrassment, and frustration about the changes breast cancer treatment brings about on their bodies. Many of the women felt d the Giwa et al. 2006). This change in their bodies may lead them to feel uncomfortable with sexual intimacy with their partners and cause them to fear that their partners will leave them if their bre asts are missing (Kingsley & Bandolin, 2011). Similar to cultural beliefs, if gender identity and gender roles are not addressed, individuals may not adhere to treatment recommendations if their identities and roles change because of it. Without discussi ng how their bodies may change and how their partners may feel about their new roles and bodies, Spanish speaking Latinas may potentially experience depression and/or anxiety which may also lead them to perceive a poor cancer experience. Additional Factor s that Affect the Treatment Experience Work, transportation, and childcare are also aspects that can affect treatment disparities among underserved cancer patients. For many working Latinos, particularly low income, it is difficult to take time off of w ork to go to a doctor unless they are experiencing acute pain. Concerns regarding income loss and medical bills play a large role in delaying underserved

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11 fac tor that delays the process of getting treatment. Unless the patients have Medicaid, appointments. Furthermore, some may find taking a bus to appointments dif ficult due to feeling ill, which in turn also affects them getting adequate care (Kingsley & Bandolin, 2011). Finally, lack of alternative childcare/eldercare is a large factor that deters underserved patients from seeking and continuing treatment. Many low income Latinas, for example, cannot afford or find childcare when they are undergoing treatment. The healthcare system and patient provider relationships could also affect cancer treatment disparities. Institutional barriers also influence access to complete treatment. For example, certain cancer treatment sites may not have adequate Spanish speaking providers that can communicate well with their Latina patients or do not have other resources such as support groups th at are linguistically appropriate (Ashing Giwa et al. 2006). Latina cancer patients are receiving inadequate services due to language barriers. Limited communication skills and understanding of Hispanic culture by providers may also create barriers to c are and patient dissatisfaction with the treatment that they receive ( Katz et al., 2005 ). Thus, it is of utmost importance to understand the roles that medical providers play, the barriers that they encounter, and their influences on patients during the p Patient Provider Relationship Providers play an important role in patient care and how patients perceive their quality of care. When patients receive a diagnosis of cancer, they may have feelings of uncertainty and loss of c ontrol over their life that may produce negative influences on their health outcomes and quality of life (Arora, 2003). Most patients look to their providers to provide information and support as they go through their cancer journey. If their provider co uld successfully address their

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12 needs and concerns, then they are likely to have reduced disruption in their quality of life (Arora, 2003; Arora, Finney Rutten, Gustafson, Moser & Hawkins, 2007 ). In multiple studies, physician behavior in terms of how well they communicate is the key to helping patients have better patient outcomes. Studies have shown that by offering patients a choice in their treatment, patients tend to have improved physical functioning, reduced anxiety and depression, higher quality of life, and better psychological adjustment at post visit follow ups (Arora, 2003; Butow, Maclean, Dunn, Tattersall, & Boyer, 1997; Fallowfield, Hall ). Among Latina breast cancer patients, when their providers do not effectiv ely communicate with them, they are more likely to report dissatisfaction and regret with their treatment decisions than Non Latina White patients (Hawley et al., 2008). In addition, Bakker, Fitch, Gray, Reed, and Bennet (2001) noted that communication is important to both the process and outcome of cancer care. They emphasized that while communication is important throughout the entire cancer experience, it is especially important during the treatment phase. An ongoing exchange and assertiveness were id entified as helpful factors in communication between providers and patients. However, because participants had only completed or had partial post secondary education, they suggested that education level may impact how h ealth care professionals communicate with their patients. Evidence exists that physicians are less informative to patients who have lower educa tion and income levels (Bakker et al. 2001). In general, multiple studies have emphasized the challenges in patient physician communication. McWilliam, Brown, and Stewart (2000) included the following challenges that need to be considered: the range of emotions patients experience when they are diag nosed, the troubles of communicating negative news and how to provide hope in such moments, and how to provide realistic reassurance in a timely manner for each individual need. Following the

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13 diagnostic appointment, patients were also more apt to share in formation when positive interactions occur b etween them and their health care providers. They also reported that the positive relationship influenced their experience of the illness more positively, as well (McWilliam et al. 2000). In general, Latinas se em to respond well when providers use empathy and emphatic communication, which seems conducive t o patient satisfaction (Molina et al. 2014). Similar to positive experiences, negative experiences could also affect how an individual would evaluate their tr eatment quality. One study noted that patient provider interactions were hindered when women felt that physicians were uncaring or disrespectful of their culture. This interaction is concerning and could affect how patients perceive their experience espe cially since most of the low income minority participants rated physician compassion as an important factor for a strong patient p rovider relationship (Sheppard et al., 2008). Other studies have also reflected similar issues. Immigrant women have more tr ouble obtaining quality care and experience more problems with their providers leading to patients viewing their providers as disrespectful. Negative interactions or negative perceptions of their providers lead patients to be fearful and apprehensive abou t accessing care (Nedjat Haiem, Carrion, et al., 2012). The women in the latter study expressed disappointment in some of their physicians as they felt rushed during their appointments, thought their providers did not provide them with enough attention, a nd felt that there was a lack of personal contact as they had different physicians seeing them. Some of these issues led patients to feel distrust and distance between them and their providers and would thus not ask questions or voice their concerns (Nedj at Haiem, Carrion, et al. 2012). The majority of the women in that particular study were from underserved backgrounds and was looking to their provider for direction and guidance through the process (Nedjat Haiem, Carrion,

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14 et al. 2012). That situation is not uncommon for patients of ethnic minority backgrounds. In more traditional cultures, providers are viewed as high status individuals who are to be revered and are hardly questioned. To question them may seem to be insulting ( Ki ngsley & Bandolin, 20 11). Thus, if patients have more traditional cultural beliefs, they may have a different experience with providers. In turn, providers who do not understand the sociocultural and economic factors that these patients experience may stereotype patients dur ing clinical encounters which may worsen the quality of care that patients receive (Betancourt, Maina, & Cervantes, 2011). Treatment Experience Little is known about how access to care, low socio economic status, and cultural factors influence the subjective experience that Latina breast cancer patients have when undergoing breast cancer treatment. In part, this is due to the lack of research with medically underserved Latino populations in general. In particular, Latino patients have been underre presented in quality of care and outcome studies despite the increased numbers of Latino cancer patients undergoing treatment. Very few, if any, large scale breast cancer treatment studies have had sufficient representation to be able to understand the qu ality of care that underserved Latina breast can cer patients receive (Hamilton et al., 2009). However, what is evident in the literature is that there are many layers of treatment considerations that underserved Latinas have to go through. As previously reviewed, what is noted in most literature is that medically underserved Latinas have multiple barriers to overcome prior to and during their cancer treatments. In addition, underserved Latinas tend to have inadequate knowledge and inaccurate beliefs abou t their cancer and lack knowledge regarding their diagnoses and treatments (Ashing Giwa et al., 2006).

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15 experience (e.g., quality of life, adherence to treatment, s atisfac tion with care). Maly et al. (2010) discussed the three most common treatment related symptoms for breast cancer patients, which included pain, nausea, and depression. Although side effect vary depending on the type of treatment received, patients expres sed side effect symptoms with common treatments such as chemotherapy, mastectomy, and lumpectomy. Breast cancer patients who undergo chemotherapy and radiation therapy tend to experience side effects such as nausea and vomiting, while those who undergo su rgery would often exper ience post surgical pain (Maly et al. 2010). Furthermore, patients who have chemotherapy report symptoms of depression and fatigue. These side effects are common among most patients, but with the additional treatment challenges th at medically underserved Latinas face, these side effects only makes the perceived treatment experience more negative. It is without a doubt that the experience of diagnosis and treatment of breast cancer alone can cause distress along with other psyc hological concerns not to mention the psychological distress that could also accompany cancer treatments. In one study, the authors found that most breast cancer patients were concerned about familial burden, but in general, the Latina patients in the stu dy seemed to accept their cancer diagnoses as well as the fears and suffering as part of their fate and spiritual journey (Ashing Giwa et al., 2006). In another study, the authors found that younger women diagnosed with breast cancer were more likely to e xperience depression than older women. The study also noted that less acculturated patients were unlikely to achieve resol ution to their depression (Maly et al. 2010). These psychological elements make breast cancer treatment and side effects more diffi cult to deal with, particularly for those with very little emotional, social, and financial support.

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16 In regards to coping methods, religiosity, hope, positive thoughts, and support were typically mentioned as coping methods that Latinas engaged in ( Culve r, Arena, Antoni, Carver, 2002; Nedjat Haiem, Lorenz, et al. 2012 ) Multiple studies have cited religiosity as a helpful coping mechanism among breast cancer patients. Latinas tended to report more religious coping than non Hispanic Whites and also to utilize self distraction and venting as coping methods more often than African American women and no n Hispanic White women (Culver et al. 2002). Ashing Giwa and colleagues (2006) reported that Latinas have a high tendency to rely on their inner strength and prayer as a coping response to their breast cancer treatments. In a study with Latina cancer patients, women identified faith as an important factor in managing their condition and a source for helping them lower their anxiety and cope with the uncert ainties of cancer treatment (Nedjat Haiem, Lorenz, et al. 2012). There is also less tendency to use humor as a method to cope with cancer among Latinos, as compared to non Hispanic whites (Culver, Arena, Wi m berly, Antoni, Carver, 2004). Moreover, a posi tive attitude would also help patients be more resilient to their illnesses as it can be a key attitude to overcoming illn esses (Ashing Giwa et al., 2004; Nedjat Haiem, Lorenz, et al. 2012). Emotional support is also an important piece in helping patien ts cope. Numerous studies have discussed family as being the primary resource for Latina breast cancer patients. Ethnic minority women in general sees value in getting support from immediate and extended family and links this value to their emotional wel l being and tre atment adherence (Ashing Giwa et al., 2004).

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17 CHAPTER II SUMMARY AND RESEARCH QUESTIONS There is limited information on how underserved Latina breast cancer patients experience breast cancer treatment in light of the multiple societal disadvantages that affect their ability to access and/or complete their treatment. Furthermore, the current body of literature fails to related outcomes (e.g., treatment completion, survival). This study will explore how underserved Latina breast cancer patients experie nce their treatment in light of multiple and complex social disadvantages. quantity of care, quality of life, overcoming treatment barriers, communication with their health care providers, coping with side effects, quality and type of treatment decision, and experiences, in depth interviews with medically underserved Lati nas who have undergone treatment for breast cancer will be analyzed. To enhance our understan ding of how provider and health care system level factors further contribute to such treatment experiences, in depth interviews with health care providers of Latina patients will be analyzed as well. The information that exists does not provide a comprehensive exploration of care in depth an alyses will seek to answer three primary research questions from L atina patients and their health

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18 1. How does the process of being diagnosed and treated for breast cancer affect the overall perceived cancer treatment experiences ( e.g., quality of life, treatment side effects, and family relationships) of medically underserved Latina breast cancer patients? 2. What specific patient factors (e.g., language, literacy, level of education, cultural beliefs) tment experiences related to psychological concerns (e.g., distress, anxiety), coping abilities to deal with such concerns, and with treatment related challenges (e.g., competing responsibilities, treatment decisions)? 3. What specific healthcare system facto rs (e.g., system practices and logistics, treatment experiences related to initiating, adhering, and completing their breast cancer treatment?

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19 CHAPTER III METHOD S This study is part of a larger project conducted to better understand the psychosocial and psychoeducational needs of underserved Latinas receiving breast cancer treatment at a safety net hospital. The larger study also aimed at designing and assessing the feasibility of an intervention had two primary phases. The first phase consisted of formative research where patients previously diagnosed with breast c medical care were interviewed regarding the psychosocial and psycho educational treatment needs of Spanish speaking Latina breast cancer patients. The information collected in the formative in terviews were then used to guide the development of a culturally based intervention for Spanish speaking Latina breast cancer patients. In the second phase of the larger study, the intervention was implemented with Latina breast cancer patients. The curr ent study will use the information gathered in the first phase of the project to explore how underserved Latinas with breast cancer appraise the treatment experience from the time they are diagnosed to the time they complete their treatment. In order to p rovide a more comprehensive view, the information will be obtained from both Latina patients who have undergone breast cancer treatment at the safe ty net hospital and from health care professionals who provide care for these breast cancer patients. Qualita tive methods will be used to understand and analyze the information gathered from both patients and healthcare providers. Participants Key Informants. Seven key informants (KIs), referred to as healthcare providers (HPs), were interviewed first. The HPs were individuals involved in the car e of breast cancer patients.

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20 HP s included a medical oncologist, a breast surgeon, a breast clinic director, a psychologist, a research coordinator, and a couple of patient navigators. Socio demographic information were collected fro m the HPs. Six female HPs and one male HP participate d in the study. Four HPs identified as non Hispanic and three identified as Hispani c. The five HP s reported working at the safety net hospital from less than one year to 6 years ( M = 2.3 8, SD = 2.40). The two patient navigators reported working at the safety net hospital from five to six years ( M = 5.50, SD = .71). One of the patient navigators reported speaking and reading Spanish better than English. Patients. Seven Latina breast can cer survivors participated in the study. All of the patient participants were Spanish speaking Latinas aged 18 and older. They had all received treatment at a safety net hospital in Denver, Colorado. The patient participants ages ranged from 38 69 years ( M = 48.43, SD = 12.58). The majority of the patients were married (71.4%) and the remaining were separated (14.3%) or widowed (14.3%). Patient participants reported being unemployed (85.7%) and most participants (71.4%) reported having a household inco me from $1,001 $2,000 per month. Spanish was preferred for the majority of the patient participants (71.4%) and the majority of the patients were born in Mexico (71.4%). The patient participants had cancer stages I III with one that was unknown. 42.9% identified as having stage I, 28.5% identified as having stage II, 14.3% identified as having stage III, and 14.3% identified not knowing the stage that they had. 85.7% of the patients reported having had surgery, 71.4% reported having chemotherapy, 42.6% had radiation treatment, and 42.6% had biological treatment. Procedures Participants were recruited by a patient navigator employed by the safety net hospital in Denver, Colorado. Patient participants were excluded if they reported having mental heal th

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21 issues (e.g. cognitive impairment, substance abuse, history of suicidal ideation/attempts). After receiving consent from participants, HPs and patients completed semi structured interviews that consisted of ten main questions with follow up probes (App endix A). Each of the individual interviews were between 30 minutes to an hour in length and was audiotaped so that the interview could subsequently be transcribed analyzed and checked for accuracy The interviews for the patients were conduct ed in Spanish and were later transcribed and translated into English for analysis. Each translated interview was compared to the original Spanish version by two independent bilingual researchers to ensure translation accuracy and consistency. The purpose of the HP interviews was to gather in depth information on what resources are currently available for this population, what needs remain, and how these needs could best be fulfilled. The patient interviews focused on their experiences going through treat ment and what they thought would have been helpful during their treatment. For both interviews, the goal was to identify what has impacted the experience for Latina BC pati ents and what recommendations HP s and patients would suggest to help build a suppor t p rogram for Latinas undergoing breast cancer treatment. The perspective of patients provided information from those who have g one through the experience of breast cancer treatment an d the perspective of HP s provided information from those who provide su ch treatment, including supportive and treatment care services. Following the interviews, patient participants were compensated $25 for their time. Prior to the interviews, all participants completed a socio demographic questionnaire (Appendix B, C, a nd D). The questionnaire for HP s asked basic questions about their ethnicity, length of time they have been providing services, and their role at the hospital. Patient participants were also given a questionnaire that requested information about their ag e, gender, education level, employment status, and income bracket.

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22 CHAPTER IV ANALYSIS Ethnographic content a nalysis (Altheide, 1987) was used to iden tify relevant themes that the HPs and patient s provided during the interviews. Ethnographic content analysis is a technique used for identifying and analyzing documents for relevance, significance, and meaning with an emphasis in discovery and description (Altheide, 1987; Altheide xive approach allows for the discovery of new themes and allows for a wider range of ideas and concepts as compared to using a quantitative content analysis alone. Krippendorff (2004) described content analysis as a research technique and scientific tool that involves specialized phenomenon, and informs practical actions. Thus, this study follow ed qualitative methodology for ethnographic content analysis. sampling, coding, reducing, inferring, and narrating. The first step of unitizing requ ires researchers to identify meaningful segments of text and categorize them into common themes. The themes would then be categorized into a coding scheme to help researchers examine the text for specific information and data. The development of the codin g scheme will be guided by the research questions proposed to ensure that the themes are relevant to the topic of the study. After a coding scheme has been developed, the themes would be reduced to broader categories to make the data more manageable. Fol lowing the reduction of themes, researchers would then infer what the data means within the structure of the research questions. The final step is narration, which refers to the compilation of the conclusions made in an understandable format.

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23 CHAPTER V RESULTS Research Question 1 How does the process of being diagnosed and treated for breast cancer affect the overall perceived cancer treatment experiences (e.g., quality of life, treatment side effects, and family relationships) of medically underserved Latina breast cancer patients ? The overall perceived treatment expe riences of underserved Latina breast cancer patients is characterized by confusion and a sense of hopelessness from the time of diagnosis and throughout the duration of treatment. This overall experience is influenced about what the treatment entails, which lends to fear, distress, and delays in treatment. Most patients mentioned not understanding their diagnosed breast cancer stage, with the exception of one pati ent who rec alled being diagnosed at Stage I For example, when asked what aspect of their diagnosis patients had trouble understanding or were not clear about, one patient stated, That, I did not understand. at stage my cancer was, or the size of the tumor Patients who reported less confusion, although they still felt hopeless, were patients who had prior family experience with breast cancer Two patients discussed the family cancer experience prior family experience with breast cancer For example, one patient stated that it was tough for them to cope with their diagnosis due to family cancer ur sisters with breast cancer, a n d it was difficult to know that I had it too. At the moment of the diagnosis, it was very difficult This particular patient felt that they had understood the disease better since she had experienced it with her sisters but she explained that the diagn osis was difficult because she knew what her sisters were going through.

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24 Healthcare providers described the treatment experience of patients as a roller coaster and a lifelong memory that was affected by treatment barriers, the treatment process and by p family involvement. The typical treatment sequence for most patients includes surgery, chemotherapy, blood draws, sometimes radiation, and treatment follow up appointments. One healthcare provider described the emotional process that patients go through as the patients move through the treatment sequence. They stated, they are getting better in some ways, probably they feel better. But still they are stru ggling with their emotions. Like sometimes they with depression and crying. The same healthcare provider described the treat ment journey as a lifelong memory. They stated that patients felt that the memories of what they went through will always stay with them like a bad memory. In addition to when the HPs discussed the treatment experience of patients, they noted that from the moment patients get diagnosed, patients often misunderstand or misconceive their diagnosis. Three HPs mentioned how patients have a misconception of what their diagnosis and treatment means. One HP noted that the concept of cancer is hard for many patients. The HP stated, [P They just have this idea what they are goin g to be, the preconceived Another HP also stated, From the beginning, the first thing when t the first meaning in W ell, they know the word So the first thing is,

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25 kay, I will lose ke that. So that is the first idea in their head. A different HP discussed how patients felt that they would never be free from cancer and that if they go and remove a tumor, the patient might be afraid that if they touch their tumor that it would be lik e a spore and spread. Similarly, two HPs discussed how patients also misunderstand their disease. The HPs described situations that they explained to their patients what their disease and prognosis is, but sometimes the patients come back with different information. One HP noted, T Like you will explain to them certain things and when you ask them if they understand maybe the week after or a couple of weeks, after that specific encoun ter, what they remember is something completely different from what you told them. Treatment Options and Treatment Delays. In addition to the diagnostic process, HPs treatment experiences because having options provided patients with a sense of control and hope. Although some patients defer to their providers for their treatment decisions and are satisfied with the decision that the provider makes, they still want to be given the options for their care. As patients discussed in the interviews, when they received options and advice rega rding what treatments they should accept, they stated that they were satisfied with their decisions after their providers explained their options. One patient said, They gave me options. There were three options: t he first one was to remove the tumor. The second one was to remove a breast where the illness was, and third one, was to remove both. That particular patient described feeling satisfied with her decision after being provided with emove a whole breast. But two

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26 with the decision I made However, another patient discussed feeling negative about her treatment decisions as she did not have many options, saying, had to remove it, there is no other option. I told The patient went on to describe feeling upset after her breast was removed and felt depressed until she met other patients similar to her. A n HP also felt that it was important that patients understand their treatment options once they a re diagnosed, as it is one of the most salient educational needs for Spanish speaking patients to understand what is happening to them and so that they can have input on their care. In addition to presenting patients with treatment options, patients and H Ps also acknowledged that there are treatment delays both from the patient and the healthcare system causing patients to have an overall negative treatment experience. They identified patients waiting to get treatment even after diagnoses as well as the s ystem causing delays even when the leaving them with less treatment options, more invasive treatments, and more fear and worry. One patient identified the hospita l that delayed her treatment unnecessarily and that lead to dissatisfaction with the treatment experiences. She stated that she had concerns about a lump but did not get treatment right away. She said that her mammography results came back and she was to l d that her lump was nothing, however she said, I would still feel the little lump and pain and until I got angry at the doctor, I told him, worried and he sent me to specialists. She felt that if her lump was treated sooner, it would

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27 not have reached the point of needing to remo ve her breast, which contributed to a negative treatment experience. Another patient described her decision to delay treatment which made her satisfied because she finally felt ready and supported to pursue treatment. She felt like she knew what her dia gnosis would be and decided to wait and take her time before getting treatment. She delayed treatment because she needed time to face the situation and after getting support from her family, she said it was easy to undergo treatment because she had their support. However, it breast cancer had progressed and if her treatment options were fewer due to her delaying treatment which could also affect how she views her overall treatment experience. Two HPs identified treatment dela y as a fa ctor that negatively affects experience, as well. One HP identified system factors as one thing that could cause delay in a records. The HP stated, It has been difficult, I have noticed, getting those hospitals to give us their [patient] images before the patient gets here. Because otherwise it is almost a waste of time for them because I cannot give them a complete consult without having that information that radiation exposure to have them get a repeat mammogram if they just had one two weeks ago. By not having the records needed, HPs are unable to Another HP discussed patients having personal barriers for treatment delays that may cause them to have a different experience. The HP discussed one with a tumor in her breast for two years before she decided to have a mastectomy due to personal barriers that she had encountered. The patient may be satisfied with the decision t o delay

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28 treatment, but she may also encounter less treatment options and more rigorous treatments due to how her disease may have progressed. Family Involvement. Family involvement was described as playing a dual role in how positively or negatively pati ents experience their diagnoses and treatment journey. Inclusion of as mentioned earlier, a patient delayed her care until she could get support from her family which helped her feel more satisfied with her decision. Family members also serve d as interpreters and a source for patients to stay strong through their battle w ith cancer which helps with how patients perceive their treatment experiences. While family members are a useful resource, it appears that patients are also afraid to be a burden on their family members and would withhold information from their family mem bers. Including the family members is an important aspect sometimes would prefer not to share all elements of their care with their family. Although it might be hel pful for patients to withhold their treatment statuses, if providers do not help patients find the proper outlets for coping, patients will likely develop increased distress and feel more negative about their treatment experience. The discussion of family involvement was common amongst the patient interviews. Patients discussed how their family members were either involved from the beginning of their treatment decisions or after they had initiated it and were already going throug h treatment. Six of the seven patients described how family support played a significant part in how well they were able to cope with their diagnosis and treatment. Patients described spouses, their children, and their sisters as sources of emotional and

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29 Another patient expressed, I had a lot of support from my family, my sisters, because they had already been through it. They help ed me and by using the wig and [the] wig more than [a] turban and anything else, that helped me a lot and they helped me a lot to keep moving forward. One of those patients also noted that their daughter was also her interpreter and went to all of her appointments with her. Family protection was another part of family involvement that patients discussed as what helped them through their trea y daughter would not feel bad, I wo uld be strong Another patient described a situation where she did not want to tell her mother in law and father to protect them and felt that they resented her for not telling them sooner. Six out of the seven HPs acknowledged family involvement as par t of the treatment experience. An HP stated that they heard their patients say that the beginning is tough and that family members try to avoid the situation, but that family eventually gives support to ea ch other. You have to involve everybody. You have to understand that decisions cannot be made until a whole family meeting is done first These two HPs both noted that multiple family members get involved and that d ifferent family members get involved at different appointments. Family involvement serves as support but one HP stated communication with family members can vary too such as when family members all want to know what is happening but they understand the si tuation differently, which can complicate things. The HP also noted, A lot of family members want to just know, put this person in a bubble and not have them do anything and you know, feel like they just need to sleep all the time and just kind of ride i t out.

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30 Lastly, another HP expressed that although patients have a lot of family involvement, especially with family members going to appointments, sometimes they do not want their families to hear about what they feel and would rather express those feel ings elsewhere, which could negatively themselves as a burden. Treatment Side Effects and Provider Recommendations. Side effects from any part of the treatment p rocess negatively impacted the patient s overall perception of their treatment. The side effects not only took a toll on the patients physically, but they also made patients depressed, affected their quality of life, and made patients afraid of the side e ffects. Each patient described having different symptoms depending on their case. One described having hot flashes following her treatment and changes in her nail color after going through chemotherapy. Another described having dizziness and kidney prob lems due to the chemo entering too fast which caused her kidneys to shut down. Another patient described having a burning sensation associated with radiation. This particular patient also described having side effects with chemotherapy, as well, which in cluded diarrhea and altered taste to food. Another patient described having altered taste as well as weight gain during her treatment. She also described having fatigue along with two other patients, but the side effect that hurt her the most side effects. One patient stated, It was falling out almost, like my hair burned. [When] I would brush or [when] I would take a shower, I had to plug the tub so that it would clog up with the hair [In] three days [my hair] fell out. My head hurt a lot before it feel out. More patients discussed this topic when they talked about their body image concerns and how it related to how emotionally distressed they were whi le undergoing treatment. Other side effects

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31 that patients discussed were nausea. Three patients discussed their bout with feeling nauseous. A patient described the following situation, T here are times that [I have] nausea, vomiting, and not h aving the s ame energy you have. It is more difficult to have a life F or example that I was working and not to go to work and be sick all the time and after the chemo having to throw up and be dizzy and not to be able to get up from bed, that is difficult. and continue on with her daily routine like she used to. Another patient also mentioned vomiting when they were going through chemotherapy but that there w ere good and bad days, so some days she would just vomit once and feel better. Even on the good days, her side effect would still interfere with her daily routine. The side effect that patients discussed most was pain. The pain from treatment and the f discussed experiencing pain during blood draws, during their biopsy before getting diagnosed with cancer, during radiation and chemotherapy, and pain after receivi ng surgery. Patients were concerned with the burning sensation that caused pain during radiation and particularly with chemotherapy and a couple patients described the feeling of actual pain in their bones from treatment. One patient recalled the followi or nothing. Only the pain that hit me when they first operated on me, here in my bones but [that is] because my potassium had gotten really low She also recalled the pain of her hair loss but like it hurt and then it began to fall out Pain af of life and left most feeling distressed about their treatments.

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32 k and to have a normal routine in their daily life. Four of the HPs discussed the treatment side effects that patients experience during the course of treatment, which includes fatigue, skin changes, weight gain, hair loss, and nausea. One HP noted, So what will happen is, is they will have surgery, they will recover for about a month and then they will start chemotherapy so that month one is surgery, surgery and recover, month two to six or two to five is chemo and chemo is where if they are going to lo se you know all that, those side effects can occur. and their sk in changes like a sun burn Although radiation does not cause hair loss, an HP noted that it makes patients tired. They also stated that patients who work can typically work when they have radiation but they have a more difficult time when they are goin g through chemotherapy due to the side effects. When patients and HPs discussed side effects, HPs would also note that providers would recommend lifestyle modifications to patients who are going through and finishing up treatment. Although patients did n ot discuss lifestyle modifications, most of the providers discussed the and psychological distress. HPs discussed providing recommendations for weight management, stress management, medication adherence, increased activity and social involvement, and lifestyle maintenance. A couple HPs stated that they try to get their patients to continue maintaining their normal routine and regular lifestyl the doctors here when they interview their patients, definitely, it is part of their treatment. The HP continued on and described how providers sugges t these recommendations along with stress management and

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33 uplifted m ood and health may help them have a more positive treatment experience and more satisfaction with their care. HPs recommended that the best way to address this lifestyle modification would be to help patients adapt to these changes by gradual progression. They specified by saying, Everything has to be gradual you know. Slow and gradual So in that way, it will be easy to assimilate for that patient. Slowly and e very time you meet her you have to say, [ly] On the other hand, another HP felt that asking pati ents to do a lifestyle change is an unrealistic s a In addition, providers noted that some of the recommendations for life modificati recommendations due to old age or competing responsibilities, which may cause more distress during treatment. Complementary Treatments. During the interviews, it was also apparent that patients and HPs were aware of patients using complementary treatments as par t of the process of their treatment. While not all patients believed in using complementary treatments, some patients discussed using complementary treatments, such as reiki and aloe to help them feel better. By engaging in complementary treatments, these patients could potentially feel better through the use of an alternative but it could also be because they are engaging and partaking in their care more and thus c reating a more positive treatment experience for themselves. Patients who put their hope and trust in Western medicine appeared satisfied with their decisions to not use

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34 complementary treatments which also did not seem to affect their treatment experience s. Two patients spoke of their belie f in Western medicine and trusts in medicine in that it would help their disease. One patient said, And we talked about medicine well what the doctor tells me I am going to do. try looking for other treatments, like per say naturalism that a lot of people [use]. know what, like I feel like no. am not really, I am not really into things like naturism an what, that who knows what But like no, I believe more in medicine. When a couple HPs discussed complementary treatments, they noted that they assume that patients may be taking other complementary treatments. A provider felt that although nutrition and supplements are used by everyone, it is especially present in the Latino patient. The use of shamans, supplements, and certain herbs are tricky for providers to navigate with patients, especially if patients are undergoing rad iation or chemotherapy. The HPs understand that it is tricky not only due to the biochemistry of the complementary treatments but also because of where they may have gotten the supplements which may be from a family member. They cannot immediately dismis s the supplements to patients as patients may view it as being disrespectful or they may put a lot of trust in the supplements/complementary. If it gets dismissed easily, that could potentially lead to distrust in the provider and create a negative treatm ent experience for patients. Research Question 2 What specific patient factors (e.g., language, literacy, level of education, cultural beliefs) anxi ety), coping abilities to deal with such concerns, and with treatment related challenges (e.g., competing responsibilities, treatment decisions)?

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35 Language, Education, Literacy, and Health Literacy. Overall, patient factors, such as language, level of experiences in the amount and quality of care that they received. The lack of language appropriate materials and language ba rriers negatively affected how p atients understood their diag nose s, treatment options, and the leve l of resources that they received. Many HPs and patients discussed patients not having a high level of education which affected their ability to read resources and information about their illnesses. It also relates t cancer literacy as they may not have as much experience with medical terms and knowledge. Without an adequate level of information about their disease and treatment, patients may have a negative treatment experience if they cann ot understand what is going on with their treatment. Additionally, if patients are not receiving the proper resources that could help them cope with their disease their quality of life is likely to be negatively compromised. One patient directly identifi ed language as a barrier for patients getting the resources that se they Three HPs identified language as a barrier to treatment in Language barriers could cause treatment misunderstanding, treatm ent confusion, and likely lead to distress or frustration for patients receiving treatment. Due to this barrier, treatment may be delayed and patients may not get the quality of care that is needed thus creating a very difficult treatment experience for p atients who are only Spanish speaking. As one of the patients mentioned earlier, not only is language a barrier, she also noted literacy issues. She mentioned that she had received many written materials for resources and

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36 that the education piece was easy for her because she knows how to read and write, but she could see how it would be difficult for other patients who are unable to read. She stated, They gave me a lot of books to read. I think that in my case it was something easy, because to know how to read, know how to write, kno o be able to have access to those things. [this happens]. O kay you have cancer and there, here is this, read it. But for the people that do not W hat happened? What One HP also noted that many underserved Latino patients have low literacy as compared to many other patients that they saw. They related this issue back to educati on. Patients did not discuss education specifically aside from one who discussed literacy issues, but HPs discussed this topic multiple times. Two HPs identified education level as a general barrier to patients making treatment decisions and understandin g their treatment decisions. Three HPs described patients lacking education in general. They described patients coming from various education school. Patient s who had low education seem to have more difficulties with their treatments and thus may have a more challenging treatment experience than those who are able to understand the course of the illness. Along with literacy and education, the topic of low he alth literacy and low cancer literacy was also discussed. Only one patient described trouble with cancer literacy. She described not understanding her diagnosis, why it happened, and how the cancer formed a nd she still does not know. With the diagnosis of cancer and having low cancer literacy, the patient stated that she felt fear. However, she also felt like she was satisfied with her treatment decision to have surgery because her doctor discussed the treatment options with her. HPs also discussed th e issue of low health literacy and particularly low cancer literacy. Three HPs expressed that this particular population has low health literacy. Providers explained

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37 that even though the patient may be smart, their understanding of medical terms is limit ed. Six HPs discussed low cancer literacy and expressed this issue through multiple examples. One HP stated, We have interpreters here, but it is not so much the language. and even some of the most sophisticated people that I their understanding of chemotherapy, or radiation, or surgery, was very, very, very basic. Another HP echoed similar issues, asserting: In general, [the] patients that we see their literacy levels are pretty low so yo u know them difficult concepts, such as cancer, on its own, it sometimes can be hard to get across that information. Lastly, another HP provided a similar response, but in terms of treatment: When it comes time to talk about therapeutic options, including study enrollment and options in terms of systemic therapies, response rates, and progression for survival, issues that are somewhat non paternalistic, that becomes a b it of a barrier in terms of communication. The examples that are provided demonstrate how a patient can easily misunderstand/misconceive their cancer if they have low cancer health literacy. This too may cause patients to feel overwhelmed by their diagnoses and treatment which likely leads to increased distress and anxiety if patients do not understand all the elements involved with cancer care. Cultural Health Beliefs and Behavioral Norms. Cultural health beliefs and how providers react to these patients view their illness and how they approach the treatment for their illnesses. In general, cultural health beliefs appeared to negatively impact how patients approach their illnes ses when they are diagnosed and before they received treatment. However, many patients also held beliefs that helped them cope with their illnesses providing them with a more positive treatment experience. Three patients expressed cultural health beliefs

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38 cancer that appears to have affected how they explained their cancer. For example one patient thought that the cancer came because of something she ate like meat or because she did not eat very healthy. Other s had beli efs that affected how they approached the cancer treatment, such as the belief that intervening with the course of diseases makes its progression worse (as opposed to letting the disease run its natural course). For example, one patient described her conc ern about beliefs among Latina patients. The HP argued that a lot of patients hold beliefs about below: Sometimes, they [the patient s] eant to be With these beliefs, patients may be fearful and delay treatment if they are not explained the origin of cancer and how treatment nowadays can help change their destiny. One patient noted, Patient education that is consistent with their c ultural health beliefs might instill hope and improve their overall treatment experience. fer to their you with little bit more you know you are like the god Another

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39 [to be] a different culture. Doctors are given more of a paternalistic role, and patients just do may seem like patients have little control over their treatment decisions, most of the patients who deferred to their providers felt satisfaction with their treatment decisions and felt like they had a good treatment experience when they deferred to their providers, a cultural norm highly sanctioned within traditional cultural values. Due to deference to authority figures that Latino patients typically ascribe to, patients who is shy, trouble with Another HP described their experience with patient self advocacy and felt that this population tend to ask fewer questions tha n non Hispanic women. If patients are having trouble advocating for themselves with their HPs, they may end up having questions t hat are left unanswered, feel that they must follow a course of treatment that they do not understand, or they may not get the resources that they need. Thus, HPs as respected figures need to be more into their treatment, overall creating a better treatment experience for them. Alte rnatively, patients who reported advocating for themselves believed it made a difference in their experience. During the patient interviews, some patients stated that they would advocate for themselves to their providers. Two of the patients stated that when they detected their lumps, their doctors would say that it would go away but they fought and came back for a check up again until they were properly diagnosed. They also stated that they advocated for themselves by asking questions and sought out inf ormation about their diagnoses

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40 to help them understand their illnesses better. Those who advocated for themselves felt empowered and had a better treatment experience since they understood their illnesses better. Psychological Concerns. Pati ents diagnos ed and undergoing breast cancer treatment experience a vast range of psychological concerns that negatively affect their treatment experience. Patients have an overwhelming experience characterized by fear, anxiety, depression, body image issues, sleep pr oblems, relationship problems, personal identity, stigma, and psychosocial comorbidities that affect their care, decisions, and recovery. When patients discussed psychological concerns, they discussed their reaction to their diagnoses as being marked by depression, fear, loneliness, anxiety, family worry and concerns, and body image concerns, which appear to contribute to an overwhelming experience. Two patients discussed their reaction to their diagnoses expressing that they felt shocked and one patient expressed depressed mood when they found out about their diagnosis. One patient expressed shock that they received a diagnosis at a younger age. She stated, It was difficult because in my family, there had never been persons diagnosed with breast cancer and I am 38 years old. I think that it was an early age to have breast cancer. Um, I felt something like, like a shock. Another patient noted a similar feeling as she was j ust 40 years old. This same patient also noted her reaction to the diagnosis. for like two weeks but then I surpassed it and then I began to think differently She stated that during t he two weeks, she felt sad, but improved with family support. Depression was a common topic among patients. Due to the invasive treatments fo r breast cancer, the depression the preceded and followed treatments negatively impacted the treatment experienc e for patients. Four of the patients described having depressed mood and

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41 very sad, I it depressed. I felt that I looked ugly, that I couldn look at me because I was somebody else Body image was a topic that six of the patients discussed as negatively impacting their treatment experience. They identified the mutilation of their breasts, ha ir loss, and weight gain as being very challenging and difficult to adjust to. One patient described her view of her body: When they removed my breast, I looked at myself on the mirror and I saw myself with only one breast, and then without hair and fat. that I have none, that was really difficult, as well. But my hair falling off affected me the most. Because well it was outsi de, and it could be seen, and I could cover my chest. One patient described that once she received her diagnosis, she knew that her hair was going to fall off because of chemo and she anticipated losing a part of herself. She stated, I had very long [hair] and it started falling off. And one see the pillow full of hair. You see the shower when you are bathing. Many times [others] associate my hair is falling; my eyelashes are falling with that. You are very sick and are even close to dying really Patients also discussed fear of suffering, of side effects, and of recurrence. One patient felt fearful that chemo was going to cause her to have side effects like it did when she previously underwent treatment. Another patient noted that she was afra id to confront her diagnosis because of fear and that her worst fear is that the cancer would come back after it is gone. She stated, That is the worst fear. My doctor tells me that every year that passes is, the first year that passes is the most danger ous because it can reoccur more easily. The more years go by, she [the doctor] says, the better the chances.

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42 One other patient discussed her fear of suffering through the pain. Also, mentioned earlier, a patient delayed treatment due to her fear. Patients also mentioned loneliness and anxiety, as factors that make their treatment experience very difficult and overwhelming. One patient mentioned feeling lonely when her spouse was unable to attend radiation with her. Two other patients expressed fe eling anxiety. One patient described her anxiety when she had her first biopsy. She was concerned due to having small children and having no one to watch them if she needed treatment. Another described feeling anxious due to her condition, in general. O ne patient expressed being You start with the diagnosis, the operations, the surgeries, everything and you get tired. Emotionally, physically, you get tired Five HPs felt that patients have an ov erwhelming experience at one point or another. They described patients having trouble processing all the pieces of information in particularly at their diagnoses. Another psychological concern that all of the HPs discussed seeing was fear. One HP stated, word cancer is very frightening. Other HPs discussed how patients have a fear of recurrence or that there is cancer elsewhere. These concerns may also accompany two other comp onents that were common themes across the HPs which were anxiety and depression. Five of the HPs discussed anxiety and four HPs discussed depression. HPs described patients having anxiety regarding their roles and heightened anxiety in general. One HP d escribed anxiety in terms of what patients expect their care quality to be, stating: and they enter this environ ment humble as it is, that aspect of the care becomes what may be more relevant in Mexico, and that is, you have very much tiered services. And I think

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43 that they look at themselves as vulnerable to being placed on a tier, which they would be at home. The discussion of depression revolved around a few topics One HP noted that they see patients who do not want to express what they feel even though they are expressing sadness. Another HP felt that some patients come in with depression before their treatment and another HP shared how depression was part of th They keep it inside themselves, but you Another HP des cribed a patient they had who came back for a check up and told the provider that in the beginning of treatments, she felt better. However, the patient also s tated that she had a difficult time when she talked to her sister, who is going through the treatments that she had the previous year. The HP felt that the memories will always remain and become a lifelong memory even though the patient was no longer depr essed. Associated with the anxiety and depression were sleep problems that two HPs identified. One HP stated that following a diagnosis, the sleep problems and anxiety issues that follow are profound. An additional psychological issue that arose was the topic of body image. Six of the HPs discussed this issue alongside relationship issues. One of the HPs discussed how it is important to talk about body image with younger patients as they feel more uncomfortable without their breasts. Another HP echoed probably less concerned. I think that the younger a woman is, you know when they are in their 40s and 50s, although this is not universally true Along with concerns about their breasts, pat ients also show some concern about hair loss and their overall sexual attractiveness which relates to their relationship concerns. An HP stated:

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44 concerned that their sexual a their personal values and identity as you start these treatments. Coping Methods. Overall, patients described using a variety of methods to cope with their illness that ultimately helped them have a positive treatment experience, as it improved their psychological health and satisfaction with their care. Patients were able to use a lot of their own supp ort and resources to cope with their diagnoses and treatment side effects. A few patient characteristic, meaning patients took on a fighting attitude that was beyond just having hope for their illness to improve. These patients were determined to do everything in their power to not let their illness take over their lives. Also as discussed before, patients tried to stay strong as they did not want to burden their family members, thus they would also opt to rely on their faith and the support from their communities to cope. However, their strongest coping mechanism was family. Many patients felt that they would respond that they have felt a sense of loneliness. Patients and HPs would also include cognitive aspects of avoidance, denial, reframing, and acceptance as coping methods that help ed patients move forward with their lives. These coping methods that patients employ demonstrated how some patients tend to cope when they encounter stressful situations. By understanding how their patients approach stress, pr oviders may be able to help some patients strengthen their coping skills and help patients reframe their cancer diagnosis and treatment situations from a more favorable perspective Patients described the following coping methods: family support, family p rotection, social support, spirituality, and acceptance. Six of the seven patients stated that they used family support and described how it is helpful to get through the breast cancer treatment experience

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45 when they have support from their spouses and the ir family members. Some women had family members who had gone through what they have been throu gh when they were treated for breast cancer One patient stated, I think that the support of others like the ones in your family, your friends, helped a lot. T he treatment helps a lot but friendship, the love of people can help you sometimes more because you feel that they are with you, you have more strength to go forward. And if you feel alone, you feel more depressed. Patients also described how their fami ly members would tangibly help them, making the experience more bearable. For example, one patient discussed how her daughter shaved her head so that she could prepare for a wig. Another patient said that she felt better talking to her family members, pe rhaps because she was able to share her treatment experience with loved ones. Patients also used family protection as a coping method to avoid overwhelming others with the experience. Additionally, p atients also discussed the role of social support in he lping them. Three patients elaborated on this topic. One patient discussed how she was able to confront her illness after her social support began to encourage her while two other patients discussed how social support is important but lacking in their ca ses which negatively affected their treatment experiences as they experienced loneliness during their treatment. One patient discussed the issue of how many Latinas here leave their families in Mexico and thus have no family here to support them. They ha ve few friends and feel alone so providing patients with additional social support would be helpful and would improve their satisfaction with their care. Another patient discussed how she felt rejected by her significant other because he was afraid of her illness. Therefore, she lacked social support initially but received social support from him once he was not afraid anymore, which helped her to cope better with her illness. The topic of spirituality was discussed as a coping method that helped provid e a positive treatment experience for patients. Patients used spirituality to accept their illness and their

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46 bodies. In particular, four patients discussed this topic as a useful mechanism to help them cope. They discussed having hope in God and acceptin g what God sends. One patient discussed going to church and how religion positively helped her through her illness and thus to cope better with the treatment experience. Lastly, one patient mentioned acceptance as a method that helped her cope with her j ourney. She discussed accepting her body and accepting what was going on during her treatment, taking things as they came. Patients also discussed having a fighting spirit, using self advocacy and reframing, avoiding negativity, distraction, having hop e, and included supporting other patients to help them ultimately meant that they would encourage themselves by believing that they would be fine after treatme nt. One patient stated that no matter how much time the doctors say she had to live, she would not spend her time crying or complaining, she would instead choose to fight the illness. Another patient discussed not letting the illness consume her and her whole life. Three patients discussed how they would cognitively reframe their situations which helped them to feel better about their treatment experience. They discussed thinking about their illness differently and tried to think of it lik e every other illness that needed to be healed. Another patient described how she reframed her hair loss by comparing it to a tree and how the old leaves need to fall out so the new would come out. While various patients used the methods above, there were individuals who chose to avoid any negativity, another distracted herself by doing other things, another patient discussed supporting others in terms of sharing her experience, and one discussed how having a wig helped her move forward. Lastly, another concept that patients discussed was the idea of holding on to hope. Four patients mentioned having hope in good medicine and hope that having a healthy life after wards would help them survive breast cancer

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47 gave me the diagnosis, it made me stronger, it gave me mo re strength to surpass and well look, I can defend myself HPs also noticed that their patients do many different things to cope with their diagnoses and illness which improved their treatment experience. One HP explained, I see people that have reall y horrible prognoses and that are you know, drawing out all of their strength and all their support system and you know everything that they have learned throughout their lives and really you know, kind of persevering even in the face of terminal illness. Healthcare providers noted that patients use coping abilities which included family support, social support, support groups, spirituality, and family protection to overcome treatment related challenges. Family and social support were discussed as the co ping mechanism most often used by patients followed by faith. Four of the HPs thought that family support was very helpful. They would often hear patients seeking support from their family. One HP said that sometimes the perception of family support is more important than actually having family support. Although many patients use family support as a copi ng method, some patients also ch ose to protect their families from their emotions. One HP felt that patients would not express their depressed feelings in an appointment in order to protect the family from worrying. In terms of other support, four providers mentioned social support as an aspect in patient coping that makes their treatment experience more bearable. They felt that in addition to family m embers, patients churches. One HP stated that the hospital had a support group that patients attended. Three HPs noted spirituality as important coping methods that Latina patients used throughout their treatment. HPs noted that Latina patients have strong faith and that they are faith based, thus

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48 they tend to use church to cope both for the social support aspect as well as for the spirituality aspect. H Ps also discussed patients using external locus of control, denial, medications, avoidance, and acceptance as things that pa tients use to cope with their breast cancer and its treatment. One HP discussed external locus of control in relation to how patien ts choose to leave their fate up to God rather than choosing to act on treatment. In terms of denial, another HP mentioned that sometimes patients are diagnosed but they choose not to follow through with their treatment for an extended period of time caus ing their outcomes to be compromised by unnecessary delays. Similarly, another HP mentioned that some patients choose to avoid the One HP felt that patients want to avoid their cancer diagnosis so they choose to blame the clinic or delay their treatment but really it is a way to avoid dealing with the cancer diagnosis. The same HP also mentioned how patients use past illness experiences or the illness experie nce of a family member to put their own illness into perception and feel better about their experience. Although some of the coping methods caused delays in treatment, they were methods that patients employed to help them move forward to act on and accept their treatment. For the most part, patients seem to be satisfied that they use such coping methods to distract themselves or avoid the topic, but those aspects did not seem to contribute to a negative treatment experience for the patients, rather it see med to help them produce other coping strengths to get through their treatments. Treatment Barriers. Educational and psychological issues are just a few barriers that underserved patients have to overcome. They also experience a lot of treatment barrier s that affect their treatment journeys. Patients did not identify many treatment barriers directly. Only

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49 one discussed the issue of transportation but the other patients did not specify specific treatment barriers to their care aside from language and ps ychological concerns that led to their treatment delays as discussed earlier. However, most of the HPs felt that treatment barriers negatively barriers such as: transportation, immigration status, insurance status, competing responsibilities, low social support, and a few cultural norms and religious beliefs. (language barriers self efficacy barriers, etc.), patients often have barriers to accessing care. Most of the HPs attributed transportation as a large reason as to why patients cannot come to the hospital for diagnostic appointments which causes delay in their diagnoses, as well as for their treatment appointments. Insurance was another key point in patients not being able to receive care in the past. In addition to insurance and transportation concerns, financial concerns would be another reason patients did not seek ca re or treatment. Not being able to have healthcare access could potentially cause patients to have a negative treatment experience. However, patients in this study felt that their financial concerns were eased once they got into the system due to provide rs finding them resources and financial support, which helped improve their treatment experience. Transportation, Insurance, and Access. Some of the things that hinder patients from getting the proper treatment are due to difficulties scheduling their appointments and difficulties paying for such treatment. Only one patient discussed transportation and financial concerns as a treatment barrier. She discussed having difficulty getting radiation treatment at a site away from the hospital and how it was difficult financially. She stated,

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50 still is, but at the moment it was bad. It was difficult for me to find help to pay that money [for treatment] because it was a lot of money that I had to pay for transportation. In regards to transportation, five of the HPs felt that transportation was very difficult for many patients. One HP described patients having to take multiple buses to get to their clinic appointments. Another HP discussed the difficulty that some patients experience because it is hard for them to drive, take a bus or taxi due to not having money to do so. With the financial strains and inability to get to their appointments, lack of transportation coul d negatively impact so how am I gonna make an appointment over h ere The discussion of insurance was also linked to immigration status. Two HPs discussed immigration status in relation to patients having trouble with access to care. One HP discussed that many of the Hispanic patients that they treat may be immigrants, w ho tend to be poor and unable to pay for their care. Another HP discussed how paperwork and institutional barriers can be an issue that negatively impacts their treatm ent experience. They stated, S ometimes these patients here, they are not legal sometim es, and they need some kind of up. Lack of insurance and the overall barrier of access to care c an complicate whether patients receive proper care. The process to overcome these barriers can seem confusing and may be overwhelming which could also contribute negatively to the experience patients have when they finally get treatment. Competing Resp onsibilities. experience is competing responsibilities.

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51 work and childcare responsibilities as reasons for patients to delay care. Although pa tients did not describe finding child care as a specific barrier to their care, they noted multiple times concerns and worries about their children and who would be able to take care of their children when patients are undergoing treatment. These concerns treatment delay which is likely to impact treatment outcomes negatively and consequently negatively impact their experience. Three of the HPs felt that competing responsibilities negatively affects the treatment experience that patients have. These responsibilities include the need to provide financially for their family. One of HPs mentioned that they always see money as a problem for these patients. economic bac kground. You know, I think, in well in the city. The HP discussed financial challenges that patients have such as not being able to pay for groceries, thus they would rather not get care for their cancer due to not being able to pay for the services. Two HPs particularly identified the inability to ta ke time off work as a barrier for treatment. One HP stated that it is difficult for patients to follow through with their treatment recommendations when they have to work full time to help support their families. This barrier could negatively affect pati experience by causing additional distress and worry regarding finances and their job, delays in their treatment due to not getting time off work, and time constraints for work, family, and their treat ment that could affect their quality of life Furthermore, the need for childcare was another challenge. Two HPs described patients worrying about how their children will be taken care of, who would pick up their children from school, and getting childcare during their treatment. An HP acknow ledged that low social support is seen when patients are unable to find others to help

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52 them with transportation or childcare. It serves as an additional barrier on top of the competing responsibilities that many patients have. Patient informants did not i dentify work or childcare as specific barriers to delay their diagnostic or treatment appointments, specifically. However, they did mention feeling concerned and worried about who would be able to take care of their children when they received their diagn oses. Such worries affected their treatment experiences negatively when patients are constantly concerned for their children. Religious Beliefs and Norms. According to HPs, other factors that contribute to treatment barriers for patients include patien religious beliefs could interfere with treatment. For example, patients who are Jehovah Witnesses will not get any blood transfusion and the first thing that they request is to sign papers requesting that if th ey need to receive blood, they would not want to get treatment. Religious norms about behavior also appear to play a role. behavioral norms that have direct connection to Catholicism (named after the Virgin Mary or "Ma motherly, etc. Three HPs identified female treatment. ave problems talking about their breast, least getting exams touch their breast and Latina women and their husbands prefer a woman provider. A third HP agreed and noted that older women have these cultural barr iers where they have difficulties examining themselves and having others examine their breasts for them. One patient acknowledges the religious driven female modesty norm. She stated: our own body. Um always for times for question of religion, do not touch your body, it is a sin. Or simply

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53 ay my breast is a little, it has a little ball. But what is that does not exist. Nothing is more important than one knowing her own body. So I think that is the most important that we know that it is ok ay to touch yourself and know what is the difference between one and another and know that you are n ot going to hell because you are touching a breast or something Research Question 3 What specific healthcare system factors (e.g., system practices and logistics, treatment related to initiating, adhering, and completing their breast cancer treatment? The main discussed by both HPs and p willingness to offer information and to provide treatment. Other helpful roles that healthcare provide rs served were offering psychological counseling, which positively influenced how patients and the ease with which patients get through the system affects adhere to their treatment and their satisfaction with their treatment experience. Providers were able to identify more healthcare system barriers than patients did during the interviews. Healthcare Provider Roles. The healthcare provider role was discussed by six HPs. Under this umbrella term, HPs included the themes of (a) emotional support and (b) assessing for discussing cancer resources, inclusion of patients family, and the overall patient provider emotional support that providers give to the patients. They described situati ons in which they needed to provide emotional support and how patients often rely on them for support. One HP

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54 they need something to help them with their anx iety or even depression Another provider do not. When the HPs discussed healthcare provider role, they also discussed the importance of assessing for patie nt understanding, discussing side effects, addressing treatment barriers, providing cancer resources, and having ongoing patient provider relationship as part of their role that could affect how patients view their experience. They felt that by making sur e that the patients understand and receive the information for the topics above, they could positively affect their relationship with the patients. One HP mentioned pushing other providers to go into a deeper role and suggests that they ask patients about their personal lives so that the patient could feel that the providers have an interest in them. Another HP brought up the topic of family inclusion and how it was their role to include the family which helps the patients feel better about their overall treatment journey. By taking time to help patients feel engaged and In addition, to help patients stay engaged during th eir treatments and more satisfied with their providers. On top of what providers include in their roles, the HPs also discussed availability. One HP described patients having the doctors as a resource and that the doctors are always available to have app ointments when the patients need them. Another aspect of their role is to provide patients with recommendations. Four HPs discussed their role in making recommendations for patients in terms of lifestyle modifications, treatment, and referrals. The HPs discussed laying out the options for patients and providing them with recommendations needed for their care so

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55 that when patients return for their next appointment, they have the necessary tools/treatment that was needed. For example, one HP discussed giv ing patient recommendations on exercises they could do with their arms so that they will not have limited range of motion in their arms. If patients do not do the exercise and come back after 6 months of getting chemotherapy, they may have more limited ra nge of motion which could affect their treatment experience. Another HP mentioned providing emotional support and celebrating changes and lifestyle modifications or and the more quality care and the quantity of resources. The only caveat would be when patients encounter barriers that keeps them from receiving the resources and when they cannot fulfill treatment recommendations, which could alternatively create a negative treatment experience for patients. Healthcare Provider Communication. As HPs discussed, they do many things in their role but those things come down to ho w well they can communicate with their patients. Most of the patients also discussed the topic of communication with their healthcare providers. Overall, patients felt that they were well supported by their providers and that their providers discussed wh at was needed with them creating a positive treatment experience for patients. Specifically, five of the patients opened up about their experiences with their providers. With the exception of one patient who described getting her diagnosis and treatment options from a nurse rather than her provider, the other patients said that they received their diagnoses and treatment options from their doctor. One patient described how the doctor provided her with her diagnosis and then provided with her with inform ation about her illness. Another patient stated,

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56 So if the doctors tell you or what it is they recommend for example the y themselves [about what] this is going to be, this will happen to the most. Another patient discussed how providers communicated with her about including her family and spiritual support as those aspects were important to her. Another patient described how her doctor advocated for her by getting her in for appointments and gettin g results done quickly. She also stated that all the doctors and nurses attended to her well. Two other patients agreed that the contributes to patients having a po sitive experience because it helps them feel comfort, which further increases their satisfaction with their care as well as their willingness to adhere to their treatment plans. HPs also mentioned healthcare provider communication as an important system fa ctor that affected treatment experience. Five HPs discussed communication topics including showing empathy, being more detailed, providing individualized attention, and providing incremental information as crucial elements to helping patients understand t heir illness. Three also discussed how the provider language could be an issue as patients may not completely understand what the provider is trying to communicate and three HPs also emphasized how poor communication between the providers and the patients could affect outcomes. For example, one HP stated that a nurse may tell a patient that they need a lumpectomy but the provider found that the nurse did not provide a full explanation to the patient and did not tell them that they need radiation treatment thus painting a different picture for the patient. From the provider perspective, if providers could attain good communication skills, patients would be able to develop a closer relationship with the provider and would thus feel supported within the hosp ital system and

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57 follow their treatments closer which could build upon a positive treatment experience for the patient. experiences. As discussed earlier, language barriers from miscommunication and cost both the patients and providers unnecessary time. When there is a language barrier and family members cannot serve as interpreters, providers would sometimes have to use interpreters. Only one patient described needing a professional interpreter to communicate, particularly in her case, in a support group, but aside from her, the other patients did not discuss the role of an interpreter. The specific role of an interpreter was also discussed by six of the HPs. A couple of the HPs discussed providers relying on translators to help them communicate with patients. Although interpreters are available, four HPs ex plained the difficulties with using interpreters within the system. They discussed having lost time waiting for an interpreter, information inequity, misinterpretation, and sometimes the interpreters are unavailable which can negatively affect the p atient In addition, patients and providers inability to communicate well can cause patient distress and confusion, as well as It depends a lot, how long you waited for that translator to come, right? Because then you lost like fifteen minutes of your visit time waiting for a translator, in the meantime, th at, but it eats out of the encounter visit and then it depends on the quality of the translators. We have translators that are fabulous but then sometimes if they are busy or that telephone is terrible. Interpreters for patients can create a positive treatment experience j ust by being able to communicate to the patient what is going on with their health and treatment. However, if the

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58 interpreter is unavailable or misinterprets the information, patients may not adhere to their treatment plan as mapped out by the provider an d the patient may not feel supported by the system which would negatively influence their treatment experience. Patient Navigator Role s Many of the patients discussed how patient navigators helped them. Four patients stated that their patient navigator helped them in general and two patients discussed how the patient navigator provided them with emotional support like giving them advice. Patient nav igators seem to contribute to a positive treatment experience for patients as they often help patients overcome barriers and offers the patients social support when it is needed. The role of a patient navigator was discussed, separately, in detail by six of the HPs. Patient navigators play a large role in helping patients overcome barriers and providing resources. Two of the HPs discussed how patient navigators help address patient barriers, particularly with the issue of transportation, insurance, remin ders for appointments, providing places for resources and educational materials, and coordinating the care for patients. Three HPs also discussed how patient navigators offer emotional support, after hours support, and encourage family support. Two HPs d iscussed patient navigators providing referrals for mental health needs and referrals for places that provide care in Spanish. Although the patient navigator role is helpful such as assisting with patient provider communication, they also have limitations For example, one HP stated, If they [the patients] were English speaking, they would get the call from the doctor, from the nurse, explaining you know, if there are any questions that arises from the whatever information you tell them, we deal with it r ight away. Where, if the navigator

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59 HPs provided insight to how patient navigators play a large role in helping patients and making sure that they receive top quality care, which experience. Logistic Concerns. experience because patients may not receive the utmost amount of resources that they need due to limited t ime, space, and resources. While most HPs noted those difficulties, patients expressed satisfaction and a positive treatment experience with the resources that they received. When patients discussed the hospital resources, they discussed how the hospital would help financially with barriers, provide resources, and support. Three patients discussed financial that the people I have met here at the hospital ha ve helped me so much, economically and emotionally, I tell her they are people, they are angels that God put in my path The other patients echoed similar statements saying that the hospital helped them economically and with their medical expenses. Anot her patient also listed two other resources including support from a volunteer who transported her every day for treatment and also having the opportunity to meet a breast cancer survivor who worked at the hospital, which provided her with support. The pa tient stated, great strength that I felt like she gave me. Seeing she was well, that was what helped me The resources that were available helped patients develop more hope and empowerment for their care. Other patient s discussed the written cancer resources and support groups that the hospital provided. Four of the patients discussed how written materials were available and providers gave them a lot of materials. One patient said that all of the materials she receive d were in Spanish while another patient described a need for more low literacy materials. One patient

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60 noted that she received a lot of materials but would get nervous upon receiving them. Another patient described the hospital having support groups and w hile she attended to help encourage others through her story, she also said that the group helped her, as well. This patient also identified a need for psychological services for family members in terms of resources when she was asked what other resources would be helpful. Although some materia ls and psychological services are available, not having the resources or the appropriate resources could lead to frustration and increased worry or misunderstanding for patients. These components could lead to diss experiences. One HP discussed how their setting had a large wait time until a patient could book an appointment, but since the system has improved, patients are able to book the next available appointment now where they went able to easily in the past. In addition, staff may also not be able to be of help due to availability and language barriers. Resources were also a logistic concern for many of the providers. They felt t hat the written resources may not be easy to read or even in the appropriate language. Two HPs discussed having limited resources and educational material, particularly those that were of an appropriate literacy level. Although four of the HPs stated tha t there are available resources for patients to use including written material in Spanish and internet resources, they reiterated that some material are not at an educational level for the patients. Additionally, two HPs also noted that the resources, par ticular the resources for mental health may not be very good quality. A lack of appropriate materials could limit the quality of resources and the care that Latina Spanish speaking patients receive during the course of their treatment.

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61 The systematic fa ctors also included conversations about the difficulties with psychological referrals and services provided to these patients as there may not be psychological services that are language appropriate. Five of the HPs expressed the concern of unavailable ps ychological services with two HPs saying that there are only English only mental health providers. Even with interpreters, one HP noted that sometimes an interpreter is not preferred. Three HPs also described other barriers in obtaining psychological serv ices for patients which includes immigration status, financial concerns, and insurance status. Although most of the patients did not receive psychological services, many described using their providers as a source for psychological needs. Providers point ed out that services are not always readily available and this could negatively impact how patients view their overall comprehensive care.

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62 CHAPTER VI DISCUSSION Low i ncome Spanish speaking Latina breast cancer patients have multiple complex factors that contribute to the disparity in cancer treatment benefits (National Institute of Cancer, 2008). The overall goal of this study was to understand how underserved Latina breast cancer patients experience their tre atment considering the multiple and complex social disadvantages that they face. Patient interviewees in the study shared their experiences as they went through their breast cancer diagnoses and treatment. In addition, they discussed individual factors t hat helped or hindered their care as well as institutional factors that helped or hindered their care. HPs also provided their views on how the process patients go through when diagnosed and treated for breast cancer can affect how patients perceive their care. Furthermore, they discussed patien t factors, their role as health care providers, and how the healthcare system can affect the care of their patients. Overall, this study explored how patient factors, system factors, and the process of undergoing t reatment determine how patients perceived their treatment experiences. Generally, patients appeared to be satisfied with the care that they received. However, their backgrounds, the hurdles that caused treatment delays, psychological issues, and treatmen t side effects seem to affect their overall treatment experience. For the most part, patients and HPs discussed similar topics and agreed on the factors that contribute to treatment delay. However, HPs mentioned more access and treatment barriers while p atients shed more light on their strengths and strong coping mechanisms that helped them get through their treatment. The social disadvantages that affect a large majority of underserved Latino/as such as lack of insurance, low income, and immigration st atuses lead to difficulties in accessing care and receiving timely and quality treatment ( Ashing Giwa et al., 2006; Doty, 2003; Susan G. Komen,

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63 2013 ). Without the ability to access care, delays in treatment may occur that may result in patients receiving treatment when their breast cancer is in a more advanced stage, having a lower 5 year survival rate, and being at a greater risk of death ( Forbes et al., 2014; Jung et al. 2011; McLaughlin et al. 2012 ; Smith et al., 2013 ). In addition, economic hardshi ps and fear of Haiem, Lorenz, et al. 2012). Few patients discussed access difficulties directly as a factor that affected their experience. In fact, they noted that when they had financial concerns, the hospital was able to provide services. However, HPs differed from patients in that they viewed financial concerns Transportation bar riers was a common concern among most HPs. They were concerned that not (Kingsley & Bandolin, 2011). Many providers felt that transportation concerns con tributed to a negative experience for patients particularly those who felt additional financial concerns because of transportation needs. Although patients did not discuss their hardships in access to care directly, in other studies, patients have felt th at they received differential care due to their ethnicity, immigration status, and financial status, which affected their access to care and treatment decisions (Ashing Giwa et al., 2006). Patients in this study may not have had that experience which may be due to the setting that is geared towards treating patients of their similar backgrounds. However, the fear of getting differential treatment may have deterred them from getting preventive care as well as delayed their decisions to go to the doctor and receive treatment. By acknowledging and addressing these factors, such as having patient navigators to help patients go through the healthcare system more smoothly and hospitals and clinics having

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64 more outreach in the community, patients may be more able and more willing to partake in their treatment (Kingsley & Bandolin, 2011), which would likely provide them with a more optimistic treatment experience. By facilitating preventive care that is easily and timely accessed and by providing information about resources, Latina breast cancer patients are likely to have less concerns and to feel more satisfied with their care. Additionally, i f the system could relive healthcare access barriers, Latina breast cancer patients may receiv e preventative care and treatment sooner, which could ultimately lower breast cancer mortality rates and improve these survival rate s through early diagnos is and treatment Similarly, low education, low literacy, low cancer literacy, and langua ge barriers can negatively affect treatment experiences. These factors can contribute to patients not having a full informed treatment decisions (Maly et al. 2010). In this study, although patients did not address education issues directly, Latinas who demonstrated a lack of understanding and language barriers appeared to defer to their providers and family members in terms of their treatment. Although som e patients are satisfied when their providers helped them make their decisions, the patients who showed overall satisfaction were the ones who better understood th eir illness and their options. For most of the patients, they felt satisfied having their pr oviders tell them to opt for certain treatment options, and on advising them on what to do for their particular prognostic situation. Patients who are given a choice in their treatment tend to have improved physical functioning, reduced anxiety and depres sion, higher quality of life, and better psychological adjustment at post visit follow ups (Arora, 2003; Butow et al. 1997; Fallowfield et al. 1994 ). Even though some of the patients in the study deferred to their providers for treatment decisions,

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65 thos e who received options felt better about their care and reported feeling less anxiety and depression. In addition, patients and providers discussed language barriers which also led to dissatisfaction with the patient provider relationship, with the resou rces that patients receive, and with the p rocess of getting care (Molina et al. 2014 ). Latina s who only speak Spanish tend to have a worse experience than those who speak English (Escarce & K apur, 2006). The HPs acknowledged language barriers as a factor that may delay treatment and limit resources as well as a factor that could create a difficult treatment experience for patients. However, the patients in this study felt that they had a good relationship with their providers regardless of their la nguage barriers, which may be due to patients having family members as interpreters and providers being able to speak to them instead. Although family members sometimes served as interpreter s it is less than ideal to have family members as interpreters s ince they are not medically trained and to the patients as thoroughly and as accurately as a trained medical interpreter would be able to do They may miss pertinent information regarding the p misinterpret the information given to them thus causing more confusion for the patients. Additionally, a lthough Spanish speaking Latinos tend to report having a worse experience than white patients, they also give higher global ratings to their physicians and healthcare plans than white patients. This may be due to their low expectations of the healthcare system or due to a disposition to defer to their providers (Escarce & Kapur, 2006). Such dynami c may demonstrate satisfaction the relationship with their healthcare provider can also improve patients perceived treatment experience. Even though education, literacy, and language barriers exists, providers

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66 can overcome these obstacles by educating the patient on their disease, providing them with resources that are appropriate for their level of education, literacy, and la nguage, and using medically trained interpreters or family members to overcome language barriers. Providing these resources supports patients to have a more positive treatment experience and to feel that their providers care about them which would also pr ovide more hope and improve the communication with their providers. Hospitals and clinics can also increase their bilingual staff and interpreters to provide better services to their monolingual patients. Changes at the system level could improve by remo ving language barriers for patients, thus creating a more comfortable and inviting environment for all patients but particularly for medically underserved patients The discrepancy between patients and HPs views on these topics may be due to several reas ons. One reason may be that HPs hav e more experience in the healthcare setting and overall health care system, thus they can identify the treatment experience of a majority of the patients. Also, due to the many years and patients they have treated, provi ders are more likely to know the need and availability of resources as compared to patients who have only had one experience and may not know the various resources that could be beneficial to them. Furthermore, the HPs may be from different socioeconomic backgrounds and may have a different expectation of the standards of quality care that patients could receive. Patients on the other hand may not have the same expectations as they seem very appreciative of the resources and financial assistance that was provided to them in the context of very low socioeconomic status. cultural beliefs can influence how patients appraise their illnesses and perceive their treatment ex periences ( Katz et al., 2005 ). Latina patients have cultural beliefs about their diagnoses that are fatalistic in which may influence a negative appraisal of the expected treatment outcomes.

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67 However, they also rely on cultural beliefs and spirituality to cope with their illness which appear to improve their treatment experience. HPs and patients both described patient factors such as self advocacy, but they differ in their views on the extent to which patients practice it. HPs felt that Latinas have tro uble advocating for themselves due to cultural paternalistic norms, which is why they tend to defer to their providers. Patients on the other hand felt that they do self advocate when they believe it is needed. Those who advocated for themselves appeared to have a sense of empowerment and were more satisfied with their treatment experience as they held some control over their illness. Clearly and influence how patients apprais e their experience P roviders who understand and incorporate cultural factors can assist patients to a dopt positive coping methods to overcome the anxiety and fear that often accompanies a cancer diagnosis. Thus, cultural factors should always be considered when treating ethnic minority populations ( Buki et al. 2008 ; Katz et al. 2005 ). rms is important to make patients feel respected and understood. Including as many influential cultural beliefs can also help patients have more hope and promote better communication and relationship with their providers. By creating a culturally tailore d program for patients that acknowledges their cultural differences and facilitates interact ing with patients in a culturally appropriate manner, healthcare providers are likely to contribute to improved treatment care. Childcare and concerns about children were other topics that were discussed. Childcare difficulties is a large factor that deters undeserved patients from seeking and continuing their care which ultimately could contribute to a negative treatment experien ce due to the delay in care (Kingsley & Bandolin, 2011). Indeed, many patients discussed concerns about their children and who would be able to watch their children while they receive treatment. HPs observed this

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68 concern as well and that it has a negativ that lack of childcare sometimes reflects the low social support that patients have to assist them. By working with patients around their schedule, patients may have one less concern to worry abou t and it may help them feel more satisfied with their care. Although some studies have discussed childcare as an obstacle for cancer patients, very few offer suggestions on what patients can do to overcome their worries and logistical concerns related to a lack of childcare. This may be an area for patient navigators and behavioral health specialists to intervene and help patients with this treatment barrier. Since the patients discussed how their family is typically involved in their care, perhaps provi ders can help patients identify family members, friends, or community resources (e.g. church) to help with childcare needs to alleviate their worries and facilitate adherence to treatment. Culturally, Latinas also hold strong familismo values which is a value o f family centeredness (Ramirez et al., 2014). This value was shown when patients discussed concern about childcare, but this value applied to other areas as well. Patients highly valued incorporating their family members into their treatment Patients and providers both acknowledged that family members were an important aspect of patients making their decisions and also receiving social support. It is of importance to allow family support as it is linked to emotional well being and t reatmen t adherence (Ashing Giwa et al., 2004). Thus, p roviders need to u nderstand and incorporate family value s the role that women play in their households, how family motivates the patients, as well as have an understanding that the patients may view themselv es as a burden completion and satisfaction For example, family support, patients may have more courage to proceed with their treatment and to make decisions, better understand their

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69 treatment through a family interpreter, and more emotional support as they go through the different stages of cancer treatment Although encouraging social support from family can be a positive aspect, it also important to provide patients with additional support if they choose to not rely on their family members for support, especially since some patients reported that they did not want to be a burden for their family members. Furthermore having multiple opinions from family mem bers may contribute to confusion when patients are treated, thus it is of importance that providers be aware of how family plays a role in the patients care and how best to In addition to family support, a good patient provider relationship was discussed ity of life (Arora, 2003; Arora, 2007 ). Patients and providers both recognized the importance of the relationship as the relationship provides patients with strength and support. A positive relationship provides a positive treatment experience for patien ts and satisfaction with the care that they are receiving despite negative factors that can affect their overall experience. Providing patients with information, respect, and empathy, can help patients assert what they need and improve the quality of care that patients receive. through ups and downs in their diagnosis, manage their side effects, and cope with their disease. As patients were diagnosed, many felt fe ar and had concerns which caused them to delay their treatment. However, this study also showed that for some patients the confirmation of their diagnosis helped patients feel empowered and to move forward with their treatment. This concept is referred t o in the literature as benefit finding, which is defined as the perception that

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70 life (Tomich & Helgeson, 2004). By seeing their situation in a positive ligh t, patients may have a more positive treatment experience because their coping mechanism may help them improve their quality of life. Beyond the diagnosis, patients also discussed dealing with multiple side effects that occurred during their treatment whic h all negatively impacted the patients. Hair loss and mastectomies were described as being painful but they also were related to depression, which psychological distress due to treatment side effects, patients may have more distress after being diagnosed, particular those who are younger and less acculturated (Maly et al. 2010). Patients and providers both recognized depression, anxiety, and fear as the main psy chological concerns among this population of women, but they also noted that most patients at some point feel ability to absorb information after they are diagnosed and their ability to identify particular feelings. Intense affect may contribute to a negative experience for patients as cognitively they are less likely to remember what their providers say to them. Being overwhelmed may also lend to feelings of anxiet y. The side effects of getting treatment greatly contributes to a negative treatment experience. Thus, providers can help patients by helping them manage the side effects medically and behaviorally. How patients chose to cope with their illness and side effects largely affects their perceived treatment experience. Patients used multiple methods to cope with their illnesses including using their faith, positive thoughts, reframing thoughts, and support which has been shown to be helpful among cancer patie nt populations ( Culver et al., 2002; Nedjat Haiem,

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71 Lorenz, et al. from the e xperience. Patients developed a source of strength that made them want to fight their disease and not let it affect their daily lives. This coping method helped improve their quality of life during treatment and provided them with a positive outlook on t heir disease. The other notable method of coping was using their family members for social support. The majority of patients and providers discussed the importance in having family members supporting the patients. Relying on family contributed to a posi tive treatment experience. Although many of the patients employed their own coping methods and found positive ways to cope, many still experienced loneliness, distress, and fear. Consequently, having mental health resources may help patients in these cas es have a better treatment experience overall. Overall, a breast cancer diagnosis, delays in treatment, lack of healthcare access, system barriers and side effects of breast cancer treatment all contributed to a negative treatment experience for patients. However, many other aspects including family support, positive coping methods, appropriate resources, and good communication between the patient and the provider, all helped patie nts have a positive perspective on their treatment experience. Patient and system factors should all be considered and treatment should be tailored for Spanish speaking Latinas to ensure that patients have quality care in light of the resources available to them. Many of the barriers can be addressed if providers across different disciplines can work together to ensure the treatment has the qualities above to ensure that patients have positive outcomes and i mproved treatment adherence, quality of life sa tisfaction with their quality and quantity of care, and assistance with overcoming treatment barriers.

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72 Limitations The information learned from this study provided valuable perspective from healthcare providers who are interested in closing the disparit y gap for Latina breast cancer patients and from patients who were affected by breast cancer. Although the insight is pertinent to the understanding of the treatment experience of Spanish speaking Latinas, there were several limitations to the study. Fir st, the study could have had potential researcher bias that could occur during the development of the interview questions and the interpretation of the interview data. However, researchers strived to standardize the coding procedures as well as the interp retation of the results during the data analysis phase. All of the data was coded by two groups of researcher and was combined and reviewed for consistency and clarity. The second limitation of the study The s tudy did not take into account the nationalities of the patients and did not consider within group differences (e.g., age, acculturation, generation). Also, the study did not take into account the different stages that patients were diagnosed with and how many months/years it has been post treatment. Since the patients in the study were survivors, the recollection of their experience may have resulted in recall bias. What they recall now might not be the experience of what they felt during their actual t reatment, which could serve as another limitation. Lastly, this study was specifically looking at underserved Spanish speaking Latinas and cannot be generalized to other populations. It may also be different for Latinas who also speak English and who are not considered underserved or underinsured. Contributions and Future Directions This study contributed to a deeper understanding of the treatment experience from the perspective of both healthcare providers and the patients. It shed knowledge on the difficulties

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73 that both groups experienced during the treatment process and shed light into the gaps that still exist. With the limited amount of information on this population, this study highlighted the experience of underserved Latinas and the need for a deeper understanding of this population and what needs to be done in order to impro ve their quality of care. In addition, the results from this study could be used to provide recommendations to improve care in safety net hospitals for this population as well as guide intervention programs to provide similar patients with more access, mo re resources, and more mental health services. Future research should build upon the knowledge and recommendations provided in this study. With the Affordable Care Act in place, more research should be focused on how more access to healthcare effects t he treatment experience of patients. Studies could also focus on mental health services for this population to alleviate provider burden on having to have multiple roles as well as providing patients with specific coping strategies to handle their illness A program that could incorporate strategies to over treatment barriers and patient characteristics as described in this study, could potentially improve outcomes for this population as well as other underserved populations where health disparities occur

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77 448. Forbes, L. J. L., Warburton, F., Richards, M. A., & Ramirez, A. J. (2014). Risk factors for delay in symptomatic presentation: a survey of cancer patients. British Journal of Cancer 111 (3), 581 588. Hamilton, A. S., Hofer, T. P., Hawley, S. T., Morrell, D., Leventhal, M., Deapen, D., Salem, B. & Katz, S. J. (2009). Latinas and breast cancer outcomes: population based sampling, ethnic identity, and acculturation assessment. Cancer Epidemiology Biomarkers & Prevention 18 (7), 2022 2029. Hawley, S. T., Janz, N. K., Hamilton, A., Griggs, J. J., Alderman, A. K., Mujahid, M., & Katz, S. J. (2008). Latina p atient perspectives about informed treatment decision making for breast cancer. Patient Education and Counseling 73 (2), 363 370. Jung, S. Y., Sereika, S. M., Linkov, F., Brufsky, A., Weissfeld, J. L., & Rosenzweig, M. (2011). The effect of delays in treatment for breast cancer metastasis on survival. Breast Cancer Research and Treatment 130 (3), 953 964. Katz, S. J., Lantz, P. M., Paredes, Y., Janz, N. K., Fagerlin, A., Liu, L., & Deapen, D. (2005). Breast cancer treatment experiences of Latinas in Los Angeles County. A m J Public Health, 95 (12), 2225. Ki ngsley, C. & Bandolin, S. (2011). Cultural and socioeconomic factors affecting cancer screening, early detection and care in the Latino population. Ethnomed.org. Retrieved from: https://ethnomed.org/ clinical/cancer/cultural and socioeconomic factors affecting cancer screening early detection and care in the latino population Krippendorff, K. (2004). Content analysis: An introduction to its methodology. Second Edition. Thousand Oaks, CA: Sage.

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78 Krogsta g, J. M. & Passel J. S. (2015). Five facts about illegal immigration in the U.S. Fact Tank: News in the Numbers. Pew Research Center. Retrieved from: http://www.pewresearch.org/fact tank/2015/11/19/5 facts about illegal immigration in the u s/ Li, C. I., Malone, K. E., & Daling, J. R. (2003). Differences in breast cancer stage, treatment, and survival by race and ethnicity. Archives of Internal Medicine 163 (1), 49 56. Lopez Class, M., Perret Gentil, M., Kreling, B., Caicedo, L., Mandelblatt, J ., & Graves, K. D. (2011). Quality of life among immigrant Latina breast cancer survivors: realities of culture and enhancing cancer care. Journal of Cancer Education 26 (4), 724 733. Maly, R. C., Liu, Y., Leake, B., Thind, A., & Diamant, A. L. (2010). Treatment related symptoms among underserved women with breast cancer: The impact of physician patient communication. Breast Cancer Research and Treatment 119 (3), 707 716. McLaughlin, J. M., Anderson, R. T., Ferketich, A. K., Seib er, E. E., Balkrishnan, R., & Paskett, E. D. (2012). Effect on survival of longer intervals between confirmed diagnosis and treatment initiation among low income women with breast cancer. Journal of Clinical Oncology 30 (36), 4493 4500. McWilliam, C. L., experiences of patient doctor communication: a working relationship. Patient Education and Counseling 39 (2), 191 204. Molina, Y., Hohl, S. D., Ko, L. K., Rodriguez, E. A., Thompson, B., & Beresford, S. A. (2014). Understanding the Patient Provider Communication Needs and Experiences of Latina and Non Latina White Women Following an Abnormal Mammogram. Journal of Cancer Education 1 9.

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79 National Cancer Institute. Cancer Health Disparities. (2008, March). Cancer Health Disparities. Retrieved from http://www.cancer.gov/cancertopics/factsheet/disparities/cancer health disparities Nedjat Haiem, F. R., Carrion, I. V., Ell, K., & Palinkas, L. (2012). Navigating the advanced cancer experience of underserved Latinas. Supportive Care in Cancer 20 (12), 3095 3104. Nedjat Haiem, F. R., Lorenz, K. A., Ell, K., Hamilton, A., & Palinkas, L. (2012). Experiences with advanced cancer among Latinas in a public health care system. Journal of Pain and Symptom Management 43 (6), 1013 1024. Ramirez, A., Perez Stable, E., Penedo, F., Talavera, G., Carrillo, J. E., Fernndez, M., & Gallion, K. (2014). Reducing time to treatment in underserved Latinas with breast cancer: The Six Cities Study. Cancer 120 (5), 752 760. Seils, D. M., & Schulman, K. A. (2003). Perceptions of racial and ethnic differences in access to healthcare. North Carolina Medical Journal 65 (6), 350 352. Sheppard, V. B., Figueiredo, M., Canar, J., Goodman, M., Caicedo, L., Kaufman, A., Norl ing, G., & Mandelblatt, J. (2008). Latina a LatinaSM: developing a breast cancer decision support intervention. Psycho Oncology 17 (4), 383 391. Simon, C. E. (2006). Breast cancer screening: cultural beliefs and diverse populations. Health & Social Work 31 (1), 36 43. Smith, E. C., Ziogas, A., & Anton Culver, H. (2013). Delay in surgical treatment and survival after breast cancer diagnosis in young women by race/ethnicity. JAMA S urgery 148 (6), 516 523. Susan G. Komen Foundation. (2014). Breast cancer in women. Retrieved from

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80 http://ww5.komen.org/BreastCancer/Statistics.html Susan G. Komen Foundation. (2015). Disparities in breast cancer screening. Retrieved from http://ww5.komen.org/BreastCancer/Dispar itiesInBreastCancerScreening.html Susan G. Komen Foundation. (2013). Racial & ethnic differences. Retrieved from http://ww5.komen.org/uploadedFiles/Content_Binaries/806 373a.pdf Tomich, P. L., & Helgeson, V. S. (2004). Is finding something good in the bad always good? Benefit finding among women with breast cancer. Health Psychology, 23(1), 16 23. U.S. Department of Health and Human Services, Office of Minority Health. (2014). Profile: Hispanic /Latino Americans. Retrieved from http://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=64 womenshealth.gov/minority healt h/ latinas/breast cancer.html

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81 APPENDIX A KI and Patient Interviews KI Interview Questions: We are designing a program to help Latina breast cancer patients better understand their diagnosis and treatment. Such a program will provide psychological support and aid them with coping strategies in order to improve their quality of life. We would like to hear your insights about what resources are currently available for this population, what needs still remain, and how these needs could b e best fulfilled. 1. In your opinion, what are the most salient educational needs regarding breast cancer diagnosis and treatment that Spanish speaking patients seem to have? Probe if not mentioned: Do you think that they clearly understand what the differe nt diagnostic stages mean and its implications? Probe if not mentioned: Do you think that they clearly understand what their treatment entails and how to follow it properly? Probe if not mentioned: What resources are currently available for Spanish speaking breast cancer patients to educate them about their diagnosis and treatment? 2. Based on your experience, what are some of the most salient mental or psychological barriers that Latina patients seem to encounter while undergoing breast cancer treatment? If not mentioned, probe: a. How much do these patients seem to struggle with distress or depression? b. Does anxiety or stress seem common and how do they manifest? c. Is fear a commo n occurrence and what does it seem related to? d. Do concerns about body image seem to be an issue? e. How do Latina patients seem to cope with mental or psychological struggles? 3. What are the gaps or holes in the current psychological or mental health support f or Spanish speaking breast cancer patients? 4. In your opinion, what are some social or cultural barriers that seem to interfere with Latina If not mentioned, probe: a. What family dynamics manifest while patients are in treatment? b. Does communication with and among family members seem to be an issue?

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82 c. Are there any health beliefs that seem to interfere with treatment? (e.g., fatalism, spirituality/religion, alternative treatments) d. What cultural differences play role when providers interact with these patients? (e.g., polite agreement, body modesty, time orientation). 5. Given the language barrier with Spanish speaking Latinas, what communication challenges seem most common and how do these tend to interfere with treatment? 6. Are there any particular recommended lifestyle changes that these patients seem to have difficulty adapting to during the course of treatment? (For example, modifying their diet, exercising) 7. Would it be feasible for patients to talk with a counselor on the same day they attend breast clinic? Probe if yes: a) How feasible is it for patients to stay after their appointment in the breast clinic? Probe if no: a) What other time would be feasible for patients to talk with their counselor? 8. At what p oint during treatment should psychological support begin and end? a. At what point along the cancer care continuum would an intervention be most effective? 9. In your opinion, how would providing psychological or mental health support to these patients affect treatment outcomes? Probe if not mentioned: Do you think patients would adhere better to their treatment? Probe if not mentioned: Do you think patients would be more satisfied with their care? 10. Is there anything that you would like to add or think is imp ortant for us to consider when implementing an intervention to provide psychological or mental health support to Latina BC patients? Patient Interview Questions We are creating a program to help women like you to better understand breast cancer and its treatment. Such a program will give them emotional support and teach them how to better deal with this difficult experience. We would like to hear about your experiences while you were

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83 going through treatment. We want to know what would have been helpful t o you during that time so we can include it in this program. 1. Think back to when you were diagnosed with breast cancer, what were some of the most helpful resources provided at the hospital to help you understand your diagnosis and recommended treatment? P robe if not mentioned: Did you feel that you had a good understanding of what your diagnosis meant? Probe if not mentioned: Did you feel that you had a good understanding of what your treatment entailed? 2. What aspects of your diagnosis were less understood or were unclear to you? Probe if not mentioned: Did you have anyone explain what you did not understand? 3. What aspects of your treatment were less understood or were unclear to you? Probe if n ot mentioned: Did you have anyone explain what you did not understand? 4. Looking back, are you satisfied with your treatment decision? a. Is there anything you wish would have been different about your treatment decision? b. Did you feel comfortable discussin g multiple options with your doctor? 5. Please tell us, which aspects listed below were most difficult for you as you went through your breast cancer treatment? And what was particularly difficult about these? a. Was it difficult to follow the treatment plan and why? b. Was it difficult to cope with the diagnosis and why? c. Was it difficult dealing with treatment side effects and why? d. Was it difficult dealing with any health care personnel and why? e. Were there any other aspects of your diagnosis or treatment that we re difficult to you that we did not mention? 6. We would like to know if there was a specific time when your emotions or feelings seemed overwhelming to you or got in the way of treatment. Can you please tell us when this was and how you felt? Probe if not mentioned: Did you ever feel worried, sad, tearful, or discouraged? a. How did you deal or cope with these feelings? 7. Did you ever discuss any cultural factors that were important to you with your doctor? (e.g., family inclusion, use of complimentary treat ments, spirituality, etc.)

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84 a. Why or why not? b. Is there anything you wish your doctor had known about your culture during your treatment? 8. From your experience as a Latina, is there anything that would be especially important to consider or include in a pro gram designed to educate and support Latinas going through breast cancer treatment? 9. We would like your opinion regarding the possibility of having a counselor to whom patients could talk to about the various struggles that they encounter during treatment. If a. Would you have preferred to meet with a counselor individually face to face before or after your appointments or at another designated time? (Why?) b. Would you have preferred to talk over the phone w ith a counselor? (Why?) c. Would you have preferred to meet with a group of other Latinas with breast cancer? (Why?) i. Which of these methods would have been most useful to you and why? 10. If you had an opportunity to meet with this counselor, would it have been helpful to discuss the common experiences and potential issues that women with breast cancer go through in treatment? If yes: We are thinking about creating stories that illustrate these experiences and issues. How would you have liked to learn about these stories?... a. Do you think that you would have liked to listen to the stories on a CD or cassette player? b. Or, would they (you have) preferred to read these stories in a story book? c. Would it have been helpful to have a chance to go home and reflect on these stories before talking to your counselor about them? 11. program like this?

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85 A PPENDIX B Patient Socio demographic Questionnaire Section I 1. Your age? _______ [Years] 2. Your current marital status? [Circle one] Never married Married Divorced Separated Living Partner Widowed 3. Where did you do most of your schooling? Latin America _____ or USA _______ 4. l of education you completed: Grade School Grade School High School College Post Graduate 1 1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 5. Are you now employed? ____ Yes ____ No Retired? ____ Yes _____ No 6. What is/was your occupation? ___________________ 7. Do you have: Medicare? ___ Yes ___ No Medicaid? ___ Yes ___ No Private insurance? ___Y es ___ No 8. Circle the range that best describes your monthly income? Less than $1,000 $1,001 $1,500 $1,501 $2,000 $2,001 $2,500 More than $2,501 9. How many people live in your household? ___________ 10. How long have you lived in the United States? ________ All my life _______Years 11. What is your zip code? __________

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86 Section II 1. When were you first diagnosed with cancer? ________month______year 2. What type of cancer was diagnosed? _____________ 3. Did you have surgery? ____Yes ____No 4. Did you have chemotherapy? ____Yes ____No 5. Did you have radiation therapy? ____Yes ____No 6. Did you have biological therapy? ____Yes ____No Section III 1. Do you speak --Only Spanish Spanish better Both Spanish and English better than Only English than English English equally well Spanish 2. Do you read --Only Spanish Spanish better Both Spanish and English better than Only English than English English equally well Spanish 3. Was your early life [childhood and teenage years] spent in ---> Only in Latin America Mo stly in Equally in Latin America Mostly in the Only in Latin America and the USA USA USA 4. Is your current circle of friends ---> Almost all Mainly Equally Hispanics & Mainly Non Almost all Hispanics/ Hispanics/ Non Hispanics from Hispanics from the from USA Latinos Latinos the USA USA 5. In relation to having an Hispanic/Latino background, do you feel ---> Very Proud Proud Somewhat Proud Little Pride No Pride

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87 APPENDIX C K ey Informant Socio demographic Questionnaire 1. Do you consider yourself to be (check one): Hispanic or Latino Not Hispanic or Latino 2. Which of the following categories best describes you (check all that apply): American Indian/Alaska Native Asian Native Hawaiian or other Pacific Islander White Black or African American 3. How long have you been working with Denver Health patients? ______________ 4. What is your medical specialty? _______________ 5. For MDs: What year did you finish your resid ency program? ___________ 6. For RNs: When did you finish nursing school or advanced practice training (i.e NP)? 7. Gender: Male Female

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88 APPENDIX D Patient Navigator Socio demographic Questionnaire 6. Gender: Male ____ Female _____ 7. Do you consider yourself to be (check one): Hispanic or Latino Not Hispanic or Latino 8. Which of the following categories best describes you (check all that apply): American Indian/Alaska Native Asian Native Hawaiian or other Pacific Islander White Black or African American 9. How long have you been working with Denver Health patients? _______ 10. Have you worked as a Patient Navigator before? Yes ___ No ___ If yes, where have you worked as such before? _______________________ If yes, for how long have you worked as Patient Navigator? _____________ 11. Grade School Grade School High School College Post Graduate 1 1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 12. Do you speak --Only Spanish Spanish better Both Spanish and English better than Only English than English English equally well Spanish 13. Do you read --Only Spanish Spanish better Both Spanish and English better than Only English than English English equally well Spanish