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Examining the psychoeducational and psychosocial needs and resources of Latina women with breast cancer

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Title:
Examining the psychoeducational and psychosocial needs and resources of Latina women with breast cancer
Creator:
Romo, Tattiana ( author )
Language:
English
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1 electronic file (90 pages). : ;

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

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Abstract:
Interventions that address the psychoeducation and psychosocial needs of Spanish-speaking Latinas with breast cancer are almost non-existent. This study explores the experiences and needs of Spanish-speaking Latinas undergoing breast cancer treatment to inform the creation of targeted interventions that meet their needs. In this study, seven key informants and seven Spanish-speaking Latina breast cancer survivors were interviewed. Data were analyzed using ethnographic content analysis. Key informants and Spanish-speaking Latina survivors described experiences through diagnosis and treatment. In addition, they provided information on the psychosocial and psychoeducational gaps that exist in the current healthcare system. Key informants provided additional information on their roles as providers and on the existent resources available to this population. Specific recommendations for a culturally and linguistically targeted psychosocial and psychoeducational intervention for Spanish-speaking Latinas diagnosed with breast cancer were gathered from the participants. Recommendations included suggestions for the psychoeducational and psychosocial content of the intervention and relevant program factors to consider when creating a feasible intervention. The results from this study will inform the development and implementation of a psychosocial and psychoeducational intervention at a safety net hospital in Denver, Colorado for Spanish-speaking Latinas diagnosed with breast cancer.
Thesis:
Thesis (M.A.)--University of Colorado Denver.
Bibliography:
Includes bibliographic references
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System requirements: Adobe Reader.
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Department of Psychology
Statement of Responsibility:
by Tattiana Romo.

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University of Colorado Denver
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Auraria Library
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952042011 ( OCLC )
ocn952042011

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Full Text
EXAMINING THE PSYCHO EDUCATIONAL AND PSYCHOSOCIAL NEEDS AND
RESOURCES OF LATINA WOMEN WITH BREAST CANCER
By
TATTIANA ROMO
B.A., COLORADO MESA UNIVERSITY, 2010
A thesis submitted to the
Faculty of the Graduate School of the
University of Colorado in partial fijfillment
of the requirements for the degree of
Master of Arts
Clinical Health Psychology Program
2015


2015
TATTTANA ROMO
ATT, RIGHTS RESERVED


This thesis for the Master of Arts degree by
Tattiana Romo
Has been approved for the
Clinical Health Psychology Program
by
Evelinn Borrayo, Chair
Kristin Kilboum
Kevin Everhart
February 19, 2016


Tattiana Romo (M.A., Clinical Health Psychology)
Examining the Psychoeducational and Psychosocial Needs and Resources of Latina
Women with Breast Cancer
Thesis directed by Professor Evelinn Borrayo.
ABSTRACT
Interventions that address the psychoeducation and psychosocial needs of
Spanish-speaking Latinas with breast cancer are almost non-existent. This study explores
the experiences and needs of Spanish-speaking Latinas undergoing breast cancer
treatment to inform the creation of targeted interventions that meet their needs. In this
study, seven key informants and seven Spanish-speaking Latina breast cancer survivors
were interviewed. Data were analyzed using ethnographic content analysis. Key
informants and Spanish-speaking Latina survivors described experiences through
diagnosis and treatment. In addition, they provided information on the psychosocial and
psychoeducational gaps that exist in the current healthcare system. Key informants
provided additional information on their roles as providers and on the existent resources
available to this population. Specific recommendations for a culturally and linguistically
targeted psychosocial and psychoeducational intervention for Spanish-speaking Latinas
diagnosed with breast cancer were gathered from the participants. Recommendations
included suggestions for the psychoeducational and psychosocial content of the
intervention and relevant program factors to consider when creating a feasible
intervention. The results from this study will inform the development and implementation
of a psychosocial and psychoeducational intervention at a safety net hospital in Denver,
Colorado for Spanish-speaking Latinas diagnosed with breast cancer.
The form and content of this abstract are approved. I recommend its publication.
m


Approved: Evelinn Borrayo
IV


DEDICATION
This thesis is dedicated to my family. To my parents Sergio and Maria Romo,
through your love and hard work, you have both been inspirations to me. I hope this is
only one of the many ways I can make you proud. To my bother Sergio Jr. and sister
Deedee Romo, what would I do without you? Both of you have helped support me and
helped me raise my daughter Milly. Without you, I could never have achieved this
goal. To John Heuton, your love, support, and encouragement to keep going when I felt
like quitting has been your greatest gift. To Miliyani, my sweet heart, you are the reason
for all of the hard work. I hope what I do pales in comparison to everything you
accomplish in your life. I love you all and thank you for your love, inspiration, and
support.
v


ACKNOWLEDGEMENTS
I would like to start off by acknowledging my labmates, Ava Drennen and
Jennifer Nguyen. We worked very hard and learned how time consuming qualitative
studies can be! Thank you for the hard work you all put into my thesis. To my advisors
and thesis committee: Evelinn Borrayo, Kristin Kilboum, and Kevin Everhart, your
guidance, mentorship, and patience have made this achievement possible. Thank you for
teaching me what it means to be a researcher. Lastly, I would like to thank my cohort: Jo
Vogeli, Shiva Fekri, Lacey Clement, and Kaile Ross. I am gratelul for the love and
support you have provided. You hold a special place in my heart and I hope that we
continue to share our struggles and above all our successes.
vi


TABLE OF CONTENTS
CHAPTER
l. BACKGROUND
Social Determinants Affecting Health Disparities among Latinas.......3
Psychosocial Interventions for Breast Cancer Patients...............11
Psychosocial Interventions for Latina Breast Cancer Patients........14
Summary.............................................................17
Research Questions..................................................18
II. METHOD
Participants........................................................20
Procedures .........................................................21
Analyses ...........................................................22
m. RESULTS
Research Question 1.................................................24
Research Question 2.................................................27
Research Question 3.................................................30
Research Question 4.................................................36
Research Question 5.................................................40
IV. DISCUSSION
Recommendations for an Intervention for Spanish-speaking Latinos diagnosed
with Breast Cancer.................................................45
Limitations.........................................................49
Contributions and Future Directions.................................52
vii


REFERENCES .............................................................55
APPENDIXES .............................................................69
A. Key Informant Interview Questions.............................69
B. Patient Interview Questions...................................72
C. Key Informant Socio-Demographic Questionnaire.................75
D. Patient Socio-Demographic Questionnaire (English and Spanish).76
viii


CHAPTER I
BACKGROUND
Breast cancer (BC) is the leading cause of cancer death among Latinas in the
United States. The 5-year survival rate for non-Latina White women with breast cancer is
88.6% whereas it is 87% for Latinas (American Cancer Society, 2014). Although Latinas
have lower breast cancer incidence rates compared to non-Hispanic White and African
American women, they are more likely to be diagnosed with larger breast cancer tumors
and at later stages, consequently, Latinas tend to have poorer survival from the disease
(American Cancer Society, 2013). However, differences in stage at diagnosis alone do
not account for disparities in cancer survival, adequate treatment follow-up or adherence
is also associated with Latinas poorer overall survival (Ward etal., 2008; Freedman et
al., 2009). Inadequate treatment adherence such as skipping or missing chemotherapy and
radiotherapy can lead to poorer BC outcomes and increased risk of recurrence or disease
progression (Colorado Cancer Coalition, 2011). Several factors have been found to
influence treatment adherence and/or delay treatment. Socioeconomic factors (e.g. lack of
insurance), poor-patient provider communication, and language barriers are among the
common factors that add to the barriers for treatment (Fedewa etal., 2011; Vona-Davis &
Rose, 2009; Freedman et al., 2011). Behavioral and psychosocial factors also play a role
in treatment adherence (Ashing-Giwa, Padilla, Bohorquez, Tejero, & Garcia, 2006). If
these factors influence treatment adherence, addressing Latinas psychosocial needs
could possibly lead to improvements in their treatment completion.
Understanding womens perceptions and experience of breast cancer treatment
may shed light on what psychosocial issues may affect treatment adherence. Breast
1


cancer treatments affect women physically, psychologically, and socially. Armstrong
(2003) coined the term symptoms experience and described it as including the number of
symptoms, its severity, and the distress these symptoms cause for women. A meta-
analysis study conducted by Denieffe and Gooney (2011) found that the symptoms
experience for women with breast cancer affects the self in that the self-image and self-
control are distressed. Breast cancer not only impinges on the self-image of a woman but
also results in feeling discredited, losing control over their lives, losing personal
autonomy, and losing certain roles. Overall, the literature is limited on the particular
experiences ofLatinas undergoing BC treatment. However, a few studies seem to suggest
that Latinas BC patients experience significant distress and unmet medical needs, lack
adequate social support, and receive less treatment and survivorship information than
other women (Luckett et al., 2011; Ell et al., 2005; Ashing-Giwa & Kim, 2009; Elder,
Ayala, Parra-Medina, & Talavera, 2009; Ashing-Giwa et al., 2004; Ashing-Giwa et al.,
2007; Ell et al., 2002; Janz et al., 2008). In addition, a systematic review conducted by
Yanez, Thompson, and Stanton (2011) reported that Latina breast cancer patients were
more likely to report poor mental, physical, and social quality of life compared to non-
Latinas. When compared to non-Latina Whites and African Americans, Latinas reported
poorer quality of life in the domain of mental health (Yanez et al., 2011). Unfortunately,
these Latina patients do not receive the psychological assistance that they need to address
issues of concern (Buki etal., 2008). Such a gap in assistance is likely related to the
social determinants of health that typically explain the health disparities that affect the
medically underserved such as lack of adequate access to health care services.
2


Social Determinants Affecting Health Disparities among Latinas
Health Care Access
Previous studies have found that Latinas are faced with multiple barriers in
accessing health care services. Such barriers include lack of insurance, lower
socioeconomic status, lower rates of health insurance coverage, and less education
(Fedewa et al., 2011; Vona-Davis & Rose, 2009; Ashing-Giwa & Kim, 2009; Rodriguez,
Ward, Perez-Stable, 2005; Ashing-Giwa et al., 2006; American College of Physicians,
2010). In addition, the American College of Physicians (2010) reported that after
adjusting for insurance status and income, ethnic minorities tended to have less access to
health care and lower-quality health care than non-minorities. According to the Center for
Disease Control and Prevention (2012), Latinos are the least likely ethnic group to be
insured. Along with the lack of insurance, Latinas face other healthcare access barriers
such as transportation, family demands, and lack of trust with providers (Ashing-Giwa et
al., 2006).
Health disparities within the Latino population may also be explained by cultural
differences. Although there is substantial research examining health disparities among
Latinas with breast cancer, only a few have set out to understand the influence of cultural
beliefs on healthcare access. Several researchers have identified language as a common
barrier to health care access. Approximately 1 in 5 Spanish speaking Latinos reported not
seeking medical care because of language barriers (American College of Physicians,
2004). Latinos with language barriers have difficulty seeking medical services, receive
lower-quality healthcare, and have greater chances for experiencing negative health
outcomes (Ashing-Giwa etal., 2006). Buki etal. (2008) conducted a qualitative study in
3


which they interviewed Latina breast cancer survivors to examine their experience from
diagnosis to long-term survivorship and found that some survivors did not fully
understand why they had been given certain treatment and wished that their physicians
had been Spanish speaking. Not only does language act as a barrier, but a lack of
acculturation into the U.S. can hinder access to health care and treatment adherence.
Acculturation
Acculturation is an important factor in our understanding of health disparities
among Latinas. Studies have found that Latinas who are low acculturated are more likely
to strongly endorse the cultural beliefs of their cultural origin. Acculturation level has
been associated with psychological distress among breast cancer women of Mexican
ancestry (Thompson & Hoffman-Goetz, 2009). Less acculturated Latinas may experience
barriers related to language proficiency and have less involvement in decision making
(Hawley et al., 2008). Latinas who have recently immigrated might find it difficult to
adjust to medical treatments common in the United States. They may experience stressors
due to language barriers, isolation from their support system, and have fewer social
relationships (Insaf, Jurkowski, & Alomar, 2010). Low acculturated Latinas tend to resort
more to the traditional medicine of their countries of origin. These medical practices
include priests, curanderos (healers), and herbal remedies (Ashing-Giwa et al., 2006).
Latinas who are high in acculturation might be better educated and have more knowledge
of the U.S. mainstream medical system. Latinas bom in the United States are more likely
to adapt to Western culture naturally and understand the medical practices of the country.
They are more likely to perform breast-self exams, obtain mammograms, and adhere to
medical treatment (Ashing-Giwa etal., 2006). Understanding the how acculturation
4


influences Latinas perceptions of breast cancer can help create interventions more
suitable for this population.
Cultural Beliefs
The growing body of literature on Latinas and breast cancer screening has shed
light on some of the beliefs that Latinas have about breast cancer. The cultural beliefs
identified in the literature appear to contribute in part to Latinas being diagnosed at later
stages of breast cancer. Understanding the role cultural beliefs might help explain the
lack of breast screening practices and how they may potentially influence treatment
adherence (Buki, Borrayo, Feigal, & Carrillo, 2004). Cultural beliefs that delay
screening, and potentially treatment adherence, include the belief that breast cancer is a
symptomatic illness. Under a symptomatic illness belief, Latinas are reluctant to believe
that they have BC unless they have obvious physical symptoms (e.g., pain, lumps),
meaning that in the absence of symptoms they may not follow-up with BC treatment.
Other cultural beliefs that are relevant to breast cancer treatment adherence might
include fatalistic beliefs. For example, if a Latina believes that breast cancer is an illness
that has no cure then she is less likely to adhere to her physicians treatment
recommendations. Studies have found that many Latina women believe that breast cancer
certainly leads to death and therefore are reluctant to discuss breast cancer (Luquis &
Villanueva Cruz, 2006). Additionally, Latinas are taught to be modest and exposing ones
body can cause feelings of shame. For example, if a Latina has a male oncologist she
might be too embarrassed to keep her medical appointments. Borrayo et al. (2005)
identified that women feel threatened by treatment and the possibility of losing their
feminine identity. Because many Latinas are unfamiliar with their treatment options, the
5


majority believe that breast cancer is treated through mastectomy. They associate the loss
of a breast with the loss of their feminine identity. Ashing-Giwa et al. (2006) found that
women were afraid of losing their jobs and immigration status if they adhered to
treatment.
The value of famialismo, the strong interdependence with family, is an important
factor that can affect treatment adherence. Latinas worry about putting their family
through psychological and financial turmoil. Key informants in the Ashing-Giwa et al.
(2006) study reported that in order to avoid family turmoil many Latinas tend to ignore
their own health concerns. In addition, some Latinas will endure their symptoms and rely
on homeopathic remedies rather than interrupting their familiar priorities while others put
off treatment because they believe it will disrupt the lives of those around them (Ashing-
Giwa etal., 2006). These threatening beliefs cannot only hinder treatment adherence but
can cause psychological distress.
Psychoeducation Needs
The literature suggests that psychoeducation is an effective psychosocial
intervention approach for cancer patients (Dastan & Buzlu, 2012). Psychoeducational
interventions help address the emotional concerns, such as distress, that may be caused
by being overwhelmed and/or confused (Galway, Black, Cantwell, Cardwell, Mills, &
Donnelly, 2012). Informational needs have been identified for Latinas with breast cancer.
Appropriate information in Spanish on breast cancer, treatment, treatment side effects,
and treatment management can help prevent fatalistic beliefs and dispel the myths that
exist within this population (Napoles-Springer et al, 2009). Low literacy among Latinas
cannot only impede access and adherence to treatment but can account for treatment
6


decisions that are misguided. In various studies women have expressed their treatment
decision regrets (Hawley et al., 2008; Katzetal., 2005; Maly, Umezawa, Ratliff, &
Leake, 2006). Recent findings stress the importance of providing psychoeducation in
interventions targeted at Latinas with breast cancer. Increasing patients knowledge of
breast cancer enhances their ability to participate actively in the decision-making process
for medical care and to manage their medical conditions better. This can lead to improved
clinical outcomes, better quality of life, and decreased morbidity and mortality (Chen et
al., 2008). Ashing-Giwa et al. (2006) found that low acculturated Latinas reported
difficulty understanding and processing information breast cancer information provided
in the medical care setting. The literature suggests that education about cancer may
decrease psychological distress experience in cancer patients (Mesters, Borne, De Boer,
& Pruyn, 2001).
Hawley and colleagues (2008) conducted a study examining the degree to which
Latina women with breast cancer participated in informed surgical breast cancer
treatment decision making compared to other race/ethic groups. They also evaluated the
factors associated with the desired amount of involvement and informed decision making
for surgical breast cancer treatment. Women were asked if they had too much, just the
right amount, or too little involvement. Decision satisfaction and regret were each
assessed. The findings suggest that Spanish-speaking Latinas were slightly less likely to
report a patient-based decision than patients in any other group, and were slightly more
likely to report too little involvement than patients in other groups. Without adjusting for
other factors, Spanish speaking Latinas were 9.4 times more likely than Caucasian
women to report decision regret. When other factors such as health literacy, translation
7


services, or presence of family or friend at treatment decision were controlled for, the
odds ratio reduced to 5.6 for decisional regret. This study found that Spanish-speaking
Latinas had very high dissatisfaction and a lot of regret and this was reported
significantly more often than women of any other group. Furthermore, women with low
health literacy were significantly more likely than those with high health literacy to report
both decision dissatisfaction and regret. Presence of a family member or friend during the
treatment decision was associated with less treatment dissatisfaction (Hawley et al.,
2008).
In conclusion, the literature seems to suggest that a match between actual and
desired involvement in decision-making is important for satisfaction with the decision
and treatment outcomes. Hawley added that language barriers and poor patient-provider
communication may be related to poor decision outcomes in Latina women with low
acculturation. Latinas with low acculturation expressed a desire for more information
(Hawley et al., 2008; Sheppard et al., 2007).
Psychosocial Needs
Substantial research has documented the impact of cancer and its treatment on
quality of life (QOL). Primary factors that affect QOL include pain, fatigue, anxiety, and
depression to name a few. Research has also found that ethnic minorities and/or
underserved populations are at greater risks for developing high levels of psychological
distress (Luckett et al., 2011; Badger et al., 2013; Eversley etal., 2005; Culver etal.,
2004; Moadel et al., 2002; Moadel etal., 2006; Spencer et al., 1999). Psychological
interventions for breast cancer in general show benefits in reducing anxiety and mood
disturbances (Jassim et al, 2013). Jassim et al. (2013) concluded in that there are several
8


benefits for non-metastatic breast cancer patients who participated in psychological
interventions. Such benefits included reductions in anxiety and mood disturbance. Other
outcomes measured in the literature, such as QOL, stress, distress, coping and
adjustment, are difficult to assess due to the variation of the psychological outcomes
terminology used. A recent systematic review concluded that Latinas tended to
experience poorer quality-of-life outcomes in mental, physical, and social domains than
women of other ethnic groups (Yanez, Thompson, & Stanton, 2011). Moadel and
colleagues (2006) assessed the needs among underserved ethnically diverse cancer
patients. A total of 248 oncology outpatients participated in this study (48% non-Hispanic
whites, 25% African Americans and 19% Hispanic). Ninety-six percent participants had
high school degree. The researchers identified that the needs were primarily information
needs followed by support. Supportive needs for their population included emotional
needs, coping support, and stress management. Furthermore, Hispanic cancer patients
reported the highest number of needs across all of the domains studied. The purpose of
assessing the needs was to guide the development of future interventions for these
patients. Moadel and colleagues advise forming culturally informed psychosocial
interventions to improve the quality of life for ethnically diverse patients.
BC patients experience psychological distress that comes with a breast cancer
diagnosis, but also life, pain, and sexuality issues. Latinas in particular tend to report
more emotional distress, sexual disruption, and social disruption (Spencer et al., 1999).
Latinas interviewed in a study conducted by Napoles-Springer andetal. (2009) reported
that the psychosocial needs included issues concerned with fear of dying and the need for
support with anxiety. Women were also faced with a sense of powerlessness during
9


diagnosis and treatment. For example, women felt that they would not ask their
physicians questions because of time constraints and lack of information in Spanish.
Latina breast cancer patients have expressed the emotional toll that a breast cancer
diagnosis produces. Behavioral interventions have been created as an outlet for emotional
expression (Fatone et al., 2007). Although these needs have been expressed, Latinas are
hesitant about seeking psychological services due to associating psychological need with
mental illness and the belief that if they need a mental health provider, they must be
mentally unstable (Ashing-Giwa et al., 2006).
There is a considerable number of meta-analysis and systematic reviews on
behavioral interventions that have provided evidence that such interventions are effective
addressing the psychosocial needs of cancer patients, including of BC patients
(Raingruber, 2011; Jacobsen & Jim, 2008; Osborn, Demoncada, & Feuerstein 2008;
Williams & Dale, 2006; Zabalegui, Sanchez, Sanchez, & Juando, 2005; Chow, Tsao, &
Harth, 2004; Uitterhoeve, Vemooy, Litjens, et al., 2004; Rehse, & Pukrop, 2003).
According to the existent meta-analyses and reviews, a limited number of articles have
focused on the effectiveness of psychosocial interventions for ethnic minorities and
underserved cancer patients, specifically Latinas with breast cancer. The literature
highlights the importance of psychoeducation and psychosocial needs for Latinas with
breast cancer. Addressing psychoeducational needs can benefit Latina breast cancer
patients in that they might make better treatment decisions, understand what their
physician is explaining, advocate for themselves, and improve treatment adherence. The
psychosocial benefits of behavioral interventions for Latinas with breast cancer include:
helping them express their emotions, helping patients feel understood in their cancer
10


experience, reducing anxiety and depression, and helping patients learn to communicate
better with physicians.
Psychosocial Interventions for Breast Cancer Patients
A recent systematic review assessed the efficacy of psychological interventions
on the psychological well-being of non-metastatic breast cancer patients. This review
included twenty-eight randomized controlled trials comprising of 3940 participants
(mostly Caucasian participants). The interventions investigated included a variety of
delivery methods including group-setting, one-on-one between a therapist and patient,
and couples therapy. Control groups also varied in that they could provide a placebo,
waiting list control or an alternative form of intervention such as providing patients with
educational leaflets, access to seminars, and/or relaxation classes. Twenty four trials
investigated cognitive behavioral therapy while the other four trials investigated
psychotherapy counseling against controls. The mean standard deviation duration of the
intervention was 14 9.65 hours with a median of 12 (maximum 39 hours and minimum
1 hour). The majority of interventions were delivered on a weekly basis. Assessing
outcomes (anxiety, depression, and quality of life) varied across studies. In general, the
results suggest that women who received cognitive behavior therapy delivered in groups
showed reductions in depression, anxiety, and mood disturbance compared to the control
group. With respect to quality of life, only the individually-delivered cognitive behavioral
intervention showed significantly better quality of life when compared to the control
group. Two group-delivered studies revealed a non-significant overall survival benefit in
favor of cognitive behavioral therapy. The four studies comparing psychotherapy to
control were identified as high risk bias and thus proved difficult to formulate
11


conclusions for the efficacy of psychotherapy (Jassim, Whitford, Hickey, & Carter,
2015). In addition, short-term, interventions (defined as less than 20 hours) were found to
be more effective in reducing anxiety and mood disturbance. Caution is advised when
interpreting these results as there were only a handfiil of long-term interventions
evaluated in this study. The findings of this systematic review confirmed that cognitive
behavioral therapy was the most frequently used approach in studying the effect of
psychological intervention in cancer patients (Moyer, Sohl, Knapp-Oliver, & Schneider,
2009; Redd, Montgomery, & DuHamel, 2011) and that it is considered a valuable method
for relieving distress in various cancer populations (Mundy, DuHamel, & Montgomery,
2003), and amongst breast cancer patients (Tatrow & Montgomery, 2006).
Matsuda, Yamaoka, Tango, Matsuda, and Nishimoto (2014) explored the
effectiveness of psychoeducational support on quality of life among early-stage breast
cancer patients. This study was a systematic review and meta-analysis of randomized
controlled trials of English-language trials only. The review included a total of eight
randomized controlled studies (610 patients vs. 549 control patients). The researchers
observed the mean differences at less than six months post-intervention with control
group. The primary outcome measured was Global Health Status/QOL scale (Global
QOL), and secondary outcomes were the subscales of QOL. The results indicate that
psychosocial support was effective in improving breast cancer symptoms with the 6
months post-intervention. Psychoeducational approach within the psychosocial support
interventions was also found to increase emotional well-being within 6 months post-
intervention. However, this was not the case for other psychosocial support interventions
excluding psychoeducation. In addition, this study did not find that psychosocial support
12


interventions provided a significant improvement in Global QOLin early-stage breast
cancer patients. Despite these findings, Matsuda and colleagues (2014) noted that there
were improvements in Global QOL and subscale scores as a result of psychosocial
support interventions. Therefore, it is important to assess QOL of breast cancer patients
who receive psychosocial support (Matsuda et al., 2014).
Naaman, Radwan, Fergusson, and Johnson (2009) evaluated eighteen randomized
controlled studies to inform the overall efficacy of psychological interventions in breast
cancer patients. Anxiety, depression, and quality of life were the primary outcomes. In
addition, the researchers were interested in the moderating effects of breast cancer stage,
treatment type, duration, and orientation on treatment efficacy. The study found that
interventions had moderate effects on improving QOL. Individual and group
interventions were associated with moderate improvements in anxiety and depression.
Short-term, coping-focused interventions (less than 20 hours) were especially beneficial
for early stage breast cancer patients. In contrast, longer term interventions with an
emphasis on support were most beneficial for patients with advanced breast cancer.
When comparing levels of anxiety and depression, patients with greater levels of distress
appeared to benefit more than patients who participated as a preventative measure. In
addition, group psychotherapy appeared to be superior to individual therapy in the
treatment of both anxiety and depression. Despite the promising findings of randomized
controlled studies aimed at breast cancer patients, medically underserved patients, such as
Latinas, are not adequately represented in such interventions.
13


Psychosocial Interventions for Latina Breast Cancer Patients
Psychosocial interventions have been found effective and beneficial for BC
patients. However, these interventions are not specifically relevant for Spanish-speaking
Latinas with breast cancer. Only a few telephone, one-on-one, and group interventions
target Latinas with breast cancer. Napoles-Springer, Ortiz, OBrien, and Diaz-Mendez
(2008) conducted a formative study to develop a culturally competent peer support
intervention for Spanish-speaking Latinas diagnosed with breast cancer. Spanish-
speaking Latinas breast cancer survivors and community advocates involved in the care
of this population were interviewed in order to develop their intervention. The barriers
and benefits of a peer support counselor intervention for this population were identified.
Results of this study suggested that interventions should begin close to diagnosis, build
self-care skills, stand culturally competent, emotionally supportive, and provide language
appropriate cancer information. The Latinas interviewed agreed that support must be
ongoing and should be provided in person or by telephone. Additionally, the findings
suggest that interventions developed for this population should encourage self-expression
and address the lack of access to healthcare services. Cultural competence was an
important component stressed by the researchers when developing an intervention for
Latinas with breast cancer. The work of Napoles, Santoyo-Olsson, Ortiz, Gregorich, Lee,
Duron, Graves, Luce, McGuire, Diaz-Mendez, and Stewart (2014) lead to the
development of Nuevo Amanecer, a peer-delivered stress management intervention for
Spanish-speaking Latinas with breast cancer. Nuevo Amanecer is an 8-week peer-
delivered intervention intended to improve health-related quality of life of this
14


population. The researchers are in the process of conducting a 6-month randomized
control trial to assess the effects of Nuevo Amanecer.
Badger, Segrin, Hepworth, Pasvogel, Weihs, and Lopez (2013) tested two
telephone-delivered interventions for their ability to improve quality of life for Latinas
with breast cancer and their supportive partners. Latina participants and their partners
were randomly assigned to one of two telephone delivered interventions (telephone
interpersonal counseling (TIP-C) or telephone health education (THE). This studys aim
was to test the efficacy of the two telephone-delivered psychosocial interventions
designed to decrease psychological distress and improve other quality of life extents
during their cancer treatment. The study found that both Latina participants and their
partners had significant improvements in quality of life; however, there was no
significant difference between the interventions. The participants in this study indicated
that they were pleased with the intervention being in Spanish, allowed for the inclusion of
their partners, and was delivered through telephone. The authors suggested that this form
of intervention is brief, culturally appropriate, and a feasible form of providing emotional
and informational support for Latinas and their partners.
Sheppard, Figueiredo, Canar, Goodman, Caicedo, Kaufman, Norling, and
Mandelblatt (2008) developed a breast cancer decision support intervention for Latinas.
This study was composed of two phases. During phase one, qualitative data were
collected from survivor advocates and Latinas actively in treatment to identify factors in
Latinas treatment decision making. In phase two, Latina participants completed a face-
to-face skill building session with a trained breast cancer survivor. The qualitative phase
of this study found that most women desired assistance when communicating with their
15


health care providers. Specifically, when asking questions and expressing their concerns
about treatment side effects. In addition, the researchers found that cancer fatalism,
misconceptions, and negative expectations surrounding chemotherapy negatively
influenced treatment decisions. The intervention was modeled over the PACE
communication model designed to improve communication between physician and
patients (Cegala, Marinelli, & Post, 2000; Cegala, McClure, Marinelli, & Post, 2000;
Cegala, Post, & McClure, 2001). Sheppard et al. study adapted from this model in that it
used Latina patient navigators to provide the intervention. The majority of women in the
study reported high satisfaction with the intervention. Few interventions specifically
targeted at Latinas with breast cancer have been developed; however, there is existing
literature on interventions for other types of cancers within this population.
Ashing-Giwas (2008) study regarding a telephone intervention was targeted at
Latinas with cervical cancer. The researcher stated that the delivery of behavioral
interventions via telephone are therapeutically effective, are more cost effective and
practical than the traditional face-to face modality and that telephone counseling may be
a more efficient approach to reach underserved survivors, who have relatively limited
time and resources. The aim of this study was to assess the feasibility of implementing a
culturally sensitive telephone intervention to cervical cancer survivors (CCS) by
enhancing their coping strategies and increasing their knowledge about cervical cancer.
Latinas were randomly assigned to a control and intervention groups. The control group
participants received a questionnaire and were provided with a survivorship kit and
additional reading materials that included information about cervical cancer, sexuality,
stress management, nutrition, and communication with doctors, family communication,
16


clinical trials, as well as available psychological and medical resources. The intervention
group participants completed six forty minute telephone counseling sessions that used a
problem-focused cognitive behavioral framework. The counseling incorporates active
listening, active support, and active verbal reinforcement for adaptive coping practices.
Outcomes were measured by the FACT-G Quality of Life scale. Results indicated a
significant increase in physical well-being and overall quality of life of the intervention
group. Women in this group reported a somewhat positive to positive effect of the
intervention on: overall outlook on life (94%), feeling hopeful (100%), energy level
(72%), family life (94%), intimacy/marital relationship (56%), spirituality (72%), social
activities (83%), quality of doctor-patient relationship (65%), and quality of care (61%).
When rating the extent to which the counseling sessions helped increase specific skills
related to attitudes and knowledge on a scale of 0 to 4 they reported a rating of 3 for:
increased awareness of psychological resources, increased awareness of nutrition,
increased awareness of medical resources, increased ability to communicate with family
better, increased stress reduction skills, and increased utilization of healthcare resources.
There are several one-on-one interventions aimed atLatinas to improve their
breast cancer screening practices, but just a few for women recently diagnosed with and
treated for breast cancer. It is crucial that studies continue to design interventions targeted
at Latinas with breast cancer. Studies that gather information directly from participants
can better inform and direct the design of interventions.
Summary
The current body of literature on psychological interventions targeted at Spanish-
speaking Latinas with breast cancer is scarce. The few interventions reported in the
17


literature do not address the needs of Spanish-speaking Latinas with breast cancer.
Existent studies are limited by small samples sizes, high non-response rates, and/or focus
exclusively on Latinos from a specific geographic area and therefore affect the
generalizability toother national regions. Because there is a dearth of interventions that
do not focus on Spanish-speaking Latinas there is a need to gather information to design
interventions that are successful in addressing their psychosocial/psychoeducational
needs.
In this study key informants and Spanish-speaking Latina breast cancer survivors
were interviewed. The goals of the interviews were to help inform a behavioral
intervention to address the needs of Spanish-speaking Latinas with breast cancer
receiving care at a safety-net hospital. The current proposal is an initial step using these
methods. The information derived from this study will help create an intervention that
meets the needs of Spanish-speaking Latinas breast cancer patients.
It is crucial to gather key informant and Spanish-speaking Latina breast cancer
survivors intervention recommendations to ensure that it addresses the needs and
concerns that are most important and relevant to those involved in any psychosocial
intervention. To gain a deeper understanding of the psychoeducational and psychosocial
needs of Spanish-speaking Latinas with breast cancer at the safety-net hospital, this study
will include the responses of key informants and Latina breast cancer survivors.
Research Questions
1. What psychoeducation/psychosocial resources currently exist for this population,
and what gaps remain?
2. What are the most salient psychosocial needs of Latina breast cancer patients?
18


3. What do key informants and patients view as the most important components to
include in a psychoeducational/psychosocial intervention for Latinas with breast
cancer?
4. What do key informants and patients perceive as the most feasible mode of
intervention?
5. What cultural factors should be included in the psychoeducational and
psychosocial intervention for this population?
19


CHAPTER II
METHOD
Participants
Latina Breast Cancer Survivors
Patient participants were recruited by a patient navigator employed by the safety-
net hospital. Seven Latina patients diagnosed with breast cancer and having undergone
treatment at a safety net hospital in Denver, CO, participated in this study. Ages of the
participants ranged from 38-69 years-old (M = 48.43, SD = 12.58). The majority of the
patients were either married (71.4%), separated (14.3%), or widowed (14.3%). Most of
the participants were currently unemployed (85.7%) and monthly household income for
(71.4%) was $1,001 $2,000. The majority of participants (71.4%) preferred to speak
Spanish and were bom in Mexico. Participants cancer stages ranged from Stage I-HI:
Stage I: 42.9%, Stage II: 28.5%, Stage HI: 14.3%, Unknown: 14.3%. Treatments reported
included surgery (85.7%), Chemotherapy (71.4%), Radiation (42.6%), and Biological
treatment (42.6%).
Key Informants
Seven key informants involved in the treatment care of Spanish-speaking Latinas
with breast cancer were key informants who participated in semi-structured interviews.
The healthcare providers included two patient navigators, a surgeon, an oncologist, and a
psychologist. Six of the seven participants were female. Three of the participants
identified as Hispanic and four as non-Hispanic. The time in years providers worked at
this safety net hospital ranged from <1 to 6 years (M=2.38, SD=2.40). The two patient
20


navigator years at the safety net hospital were from 5 and 6 years (M=5.50, SD=.71).
One of the two patient navigators reported speaking and reading Spanish better than
English.
Procedures
The safety net hospital from where the participants were recruited serves over
150,000 residents who reside in several medically underserved areas. Upon receiving
consent from the participants and key informants, interviews were completed using
semi-structured interviews. These qualitative interviews provided the opportunity to
gather in-depth information from the Latina BC survivors who are affected by disparate
BC care and providers who are familiar with the need of BC patients. Each interview
ranged from 30 minutes to one hour in length and was audio taped for later transcription,
translation (if required), and analysis. The semi-structured interviews with key
informants and Latina BC survivors (see Appendix A and B respectively) inquired about
psychosocial and psychoeducational factors that impact the care of Spanish-speaking
Latina BC patients.
All participants were asked to complete a socio-demographic questionnaire at the
time of their interviews. Key informant questionnaires (See Appendix C) asked for
information about gender, ethnicity, and years working at the safety-net hospital.
Patient questionnaires (See Appendix D) asked for information about participants age,
education level, country of origin, time in theU.S., marital status, employment,
insurance status, income, education level, and acculturation.
21


Analysis
Altheides ethnographic content analysis (1987) was utilized in order to gather
relevant themes from the key informants and Latina breast cancer survivors.
Ethnographic content analysis was used to document and understand the communication
of meaning and verify theoretical relationship (Altheide, 1987). This method of analysis
is preferred to quantitative content analysis because it provides opportunities for
discovery and verification, is always a reflexive research design, and emphasizes validity.
In addition it permits the researcher to deal with numbered and narrative data.
Ethnographic content analysis also allows for the emergence of themes throughout the
data analysis because of its reflexive and circular progression from data collection,
analysis, and interpretation. In order to analyze the qualitative data, Krippendoiff s
(2004) qualitative methodology for ethnographic content analysis helped extract attitudes,
beliefs, emotions, and values from our interviews.
KrippendorfFs (2004) qualitative methodology steps for ethnographic content
analysis include unitizing, sampling, coding, reducing, inferring, and narrating. The first
step of analysis is unitizing, this step requires the researcher to categorize meaningful
segments of text into common themes. The researcher developed a coding scheme in
order to facilitate the examination of the text for specific data. The research questions are
meant to guide the coding scheme so as to ensure that the themes extracted are relevant to
the topic of interest. Following the extraction of themes, these themes were reduced to
broader categories in order to make the data more controllable. This is followed by
inferring what the data means within the framework of the research questions. The final
22


step in the analysis was narration; which included a compilation of the conclusions in an
understandable format.
23


CHAPTER HI
RESULTS
The responses of key informants and Spanish-speaking Latina breast cancer
survivors are included together to better synthesize and make the results more
comprehensible. Key informants and Spanish-speaking Latina breast cancer survivors
provided information and recommendations for a behavioral intervention.
Research Question 1
What p sychoeducatio n psychosoc icil resources currently exist for this population, and
what gaps remain?
Key informants and Spanish-speaking Latina breast cancer survivors provided
information on available breast cancer resources. The consensus was that there were
written materials such as books and pamphlets available in the cancer resource center.
Other resources available included interpreters and patient navigators. Although the
consensus was that there are available materials there seems to be confusion as to the
amount. For example, those who worked in the cancer resource center mentioned having
a lot of books and pamphlets. On the other hand a key informant not involved with the
cancer resource center stated when asked if there were written materials in Spanish, Yes.
Not a handful, but you know, because of the way things are in terms of access to
information, theres tons of online Spanish information as well. It is also worth
mentioning that the books available in Spanish consisted of nationally published books
which may be a problem if they are not appropriate in the sense of their readers literacy
level. Another issue related to the psychoeducational gap is that there are limited
24


resources for educational materials. Obtaining written material in the appropriate
language and literacy level is quite challenging as one key informant presented,
Getting the materials can be challenging. We dont have funding for it, but I am
looking for a funding source to help us order everything from the National Cancer
Institute. You can order so many and then beyond that amount you have to pay.
What is interesting is that although great efforts are being made to provide this population
with information on breast cancer, having resources in the appropriate language is not
enough as another key informant stated,
Some of the materials that Ilooked at and its, I think beyond their educational
levels or literacy levels. I had an experience with a woman who was diagnosed
with breast cancer who read in a booklet provided by NCI saying not to have
chocolate. Well her son made her a chocolate cake for her birthday and she
refused to eat it.
Spanish-speaking Latina breast cancer survivors described their interactions with
available resources in the form of doctors and patient navigators providing information.
When asked specifically if they were given written materials most described having been
given books and pamphlets. A patient shed light into the problem with written materials,
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 ok, you have cancer and there, here is this, read it. But for
the people that do not speak, who dont read, its difficult because you say, what
happened? What is going on? For someone who does not speak English, that
25


doesnt understand, that does not know how to read, its difficult because they
dont even know where to start.
It is understandable that these patients would describe as the most helpful resources as
those coming from people such as doctors, patient navigators, support groups, survivors,
and especially financial support.
Key informants and patients agreed on the usefulness of having interpreters and
patient navigators as a resource. The role of the interpreter as a resource was to facilitate
communication between providers and patients. This at times was difficult because of the
unavailability of the interpreters or difficulty with telephone interpreters. The patient
navigator role was described as providing emotional support, resources, educational
materials, referrals, and to an extent address patient barriers. A Spanish-speaking Latina
breast cancer survivor described her experience having a patient navigator,
Thank god like Herminia I have thanked her so much because she has helped me
so much and I dont have what to thank her with. Because she would say a
psychologist is going to come and I can take you. She could take me everywhere,
but I would feel capable but she did offer all the help she could give. Like her I
think people should be.
It is evident how important the support of others is for Spanish-speaking Latina
breast cancer patients. Psychosocial information about resources was obtained through
the interview with key informants. Although we did not specifically ask the BC survivors
a few mentioned their patient navigator as a resource. Key informants specifically
mentioned having a psychologist and support groups in their safety net hospital. The
problem was that the psychologist and support groups were English speaking only. Other
26


problems that arose with psychosocial support were your typical treatment barriers such
as transportation. Many patients are unable to attend support groups or they would cease
to continue even in the English group for unexplained reasons. The patient navigator
provided more information on the gaps within psychosocial resources,
Oh but we have somebody over here but she speak English only so they need an
interpreter sometimes they dont want to have interpreter. I dont know why. And
uh most of the time they dont have any insurance so how Em gonna make
appointments over here? Servicios de la raza doesnt charge.
The problem with having to refer these patients out is the waitlist. In addition, relying on
an interpreter for these services may also be a barrier to psychosocial services. These
patients seem to have to rely on their patient navigator and families for support due to
insurance and legal status.
Research Question 2
What are the most salient psychosocial needs of Latina breast cancer patients?
Key informants and BC survivors identified various psychological concerns
present during the breast cancer experience. Several key informants described that
patients undergo an overwhelming experience including, fear, anxiety, depressions, body
image issues, and relationship issues. BC survivors also mentioned the above experiences
and added family worry, financial concerns, irritability, and preoccupation with cancer.
Key informants are aware that these patients are scared,
I think in my particular experience, we need to be very understanding. And we
need to be, um, understand their feelings first. Because theyre with a lot of fear.
27


They dont know what they are going to do, so we need to reach them in different
ways.
Another key informant provided more information on the interaction between
psychological concerns such as fear and the culture,
You know what uh unfortunately Hispanic people especially from Mexico they
dont know nothing about the treatment or cancer. Because the Spanish people
they dont want to hear the word cancer because they are scared.. .1 have one of
my patients that she has a lot anxiety and when she feels something even though
if she feels something is happen a little pinch in arm or whatever she thinks she
has cancer again and she calls me immediately...
The anxiety that some of these patients experience is not only tied to the diagnosis and
treatment but also due to their legal status and/or their previous experience in the medical
system from their country of origin, for example,
I think that sometimes, theyre lower class, theyre working class people and they
enter this environment.. .that aspect of the care becomes what may be more
relevant in Mexico, you have a very much tiered services. And I think that they
look at themselves as vulnerable to being placed on a tier, which they would beat
home...and once they come here, that anxiety...remains.
As far as body image issues one key informant described the experience as,
I mean certainly the younger population are going to be more concerned about
body image issues. Umm... sometimes you know it depends on the marital status
but not always. I always find that the women are more concerned about the body
28


image stuff than the men. ..the partners are kind of like, I rather you be alive than
have two breasts kind of thing. But certainly... its more salient.
Key informants communicated the importance of how being diagnosed with
breast cancer can become an overwhelming experience for these women in that not only
do they have to deal with the diagnosis and treatment but also the psychological issues
that may arise from them as well. Spanish-speaking Latina breast cancer survivors
provided us with the psychological concerns they faced regarding the previously
identified issues. Certain patients described the overwhelming and impacting news of
their diagnosis, Well when they give you the news its something like you want the earth
to swallow you up .. .1 felt very bad like something left me.
An interesting finding was how reading materials caused sadness and depression.
For example,
In the beginning no because they would make me sad. Like I couldnt no...Now I
am barely, by pieces right, like by looking how to behave to prevent what you do
that can help so you dont get depressed well so as to not be sad. I would get
really sad and I couldnt...
This patient was unable to read booklets because they would remind her of her diagnosis
and she would become overwhelmed.
Another identified psychological concern was family worry. These women
worried about dying and leaving their children behind, I have two daughters and they
were the first thing that came to mind. Ok if something happens to me they are going to
be left alone. On top of the shock, sadness, and worry, they also experienced concerns
with body image. All of the Spanish-speaking Latina breast cancer survivors discussed
29


their body image experience. Specifically, hair loss was the topic most discussed. When
asked if there was any other aspects of their diagnosis or treatment that were difficult for
them one patient replied,
Yes, the the hair. Eh when it, because I had it very long and it started falling off
And one sees the pillow full of of hair. You see the the shower when you are
bathing and say...many times they associate my hair is falling, my eyelashes are
falling with that you are very sick and are even close to dying really. But III, did
I put it like this, it is like a tree whos old leaves are falling so that the new could
come out. And that is how I picture my body a tree and saying the leaves have to
fall so it can come out.. .but I cut the rest of my hair because since I already had
bald spots I said I dont want to look like Jason in Friday the 13th (laughs).. .1 got
the machine and cut it. I did cry, it was difficult, but I said, No, I am this tree and
this tree needs to shed its leaves and lets go!
This patients statement shed light on several issues. One, hair loss impacts a woman
deeply to the point where she worries that people will believe she is severely ill or dying.
Two, there are misconceptions in this culture around hair loss. Finally, patients often
cope by cutting off" their hair and adopting new ways of thinking. Unfortunately, not all
patients have a positive outlook or a tree metaphor. Other patients described their
experience as something they are still struggling with to this day.
Research Question 3
What do key informants and patients view as the most important components to include
in a psychoeducational intervention for Latinas with breast cancer?
30


Key informants identified several intervention components that would benefit
Latinas with breast cancer which included rapport building, discussing the initial shock of
a diagnosis, psychological support to address depression and anxiety, body image, coping
skills, treatment options, and managing side effects. Key informants also addressed what
the goals of the intervention should be and included: increasing adherence, improving
quality of life, and increasing psychological support. When asked how providing patients
with mental health support would help them, a key informant responded, So I think
these patients need this kind of support, psychology support, and it will change their life.
Definitely. Definitely the outcome it would be great. Another key informant provided a
more specific answer which included several of the themes previously stated,
I think the same day youre there is critical, because that day involves a high level
of anxiety, even if its chronic visits, everybody gets anxious.. .Because youre
facing someone whose facing their own, sort of death. I mean, they are
dying...And I always say, if the patient is here, you feel free to go in. And Ill
come in, and well nicely interrupt one another. And youll stay for the exam, and
Ill ask you if there are any things we should be talking about that we havent
mentioned. And well talk as a unit. And well talk in front of the patient. None
of this secret stuff in the hallway... And Ill say to the person did we forget
something? Make them interact.
This key informant was addressing the benefits of having providers collaborate
and how this may enhance rapport building. Several providers identified anxiety,
depression, and body image as components that should be addressed in an intervention.
The following key informant expressed his thoughts,
31


The ability to cope, the ability to have some retention of self-value, and I really
worry about self-loathing is the big issue, which people will not acknowledge.
People blame themselves for being sick with cancer... This is an emotional
process of getting people through this and at the other end without being so
damaged that they just cant pick up their life in one or two or three or four years,
if they ever do...and you dont intellectualize those processes. You handle them
emotionally. And thats why, when you interact with these patients, its time to
start at a very basic level. Either when theyre in trouble and you start to
appreciate that emotional kind of reconstruction...
Key informants recognized the importance of having a discussion with patients
around emotions and addressing psychological concerns such as fear of treatment. The
following statement sheds light on the fears patients experience,
They dont know how treatment is gonna be. How is gonna be the side effects so
they have fears. Sometimes they call me in the middle of the night and they tell
me, I have a fever or I have a headache or something like that and uh tell them
they have a thermometer put the thermometer how is your fever if your fever is
100.4 you need to go over to emergency room. But if not that point you still calm
and relax they need a lot of help during treatment. And I think even when they
end the treatment they know everything so its gonna be better for them.
This key informant also identified body image and hair loss, as topics that should be
addressed in an intervention, When they loss the hair its a huge barrier for them. They
cry they dont want to they start asking Im going to loss my eyelashes. Key
informants are aware of the emotional difficulties that arise from body image issues. It
32


appears that the majority of key informants agree that fear is a common emotion
experienced by Latinas with breast cancer and this may be exacerbated when there is a
misconception of treatment side effects.
The emotional journey that Latinas with breast cancer face is one that was
described as a roller coaster ride. The key informants agreed that their treatment
experience is difficult and therefore addressing emotions is beneficial because of the
difficulties the patients experience.
I think its more like uh, 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, crying...I actually had a
patient... and she was telling me I have like uh, a lot of depression, I didnt want
to go out from my house and everything, but now I feel better. And then, her
sister told me about yesterday, she melt down. What happened? I started to cry
because it remind me again when they were doing my blood work, remind me of
everything. You know, its like things happen in her. Right now with her, that
happened 1 year ago, so it brings her memories back, you know. Like everything
what she went through...
Patients have unaddressed emotions throughout their treatment experience and it appears
as though these may be long-lasting for some patients.
Overall, key informants agreed that psychological support would benefit the
patient. Key informants suggested that an intervention could include emotional support,
33


alleviating fears, address body image issues, and improving quality of life. Because
Latina breast cancer patients have a major caregiver role, addressing their concerns about
burdening their family with emotions and fears they experience during their breast cancer
treatment could be components of an intervention they discuss and work through with
their therapist.
Latina breast cancer survivors were also asked to provide their recommendations.
In addition to providing their content recommendations they were asked what type of
method of information they would prefer. For example survivors were asked if they
preferred to learn about a vignette through a story they could read or a video/audiotape
they could listen to. Suggestions on the method varied evenly across. Some preferred to
take a story home and read it so they could discuss with their therapist in the next session
whereas others preferred an audiotape.
Latina BC survivors discussed content recommendations for an intervention that
address psychological concerns such as body image, social support, and emotional
support. Participants shared that patient coping, resources, and spirituality are also
important components to include in an intervention for this population. When asked if
there was anything that would be especially important to consider or include in a program
designed to educate and support Latinas going through breast cancer treatment, a Latina
breast cancer survivor responded that the loss of hair was difficult for her,
Oh god I did not want to end up bald! But it was not going to fall off" me because I
only felt it three times. I felt. ..locks of hair. It can be felt. But then my daughter
told me.. .Like they said here, that in order for the wig to fit me I needed to
34


shave...and my daughter shaved me... Ay! And that I felt, felt very...that
depressed me a little bit.
Latinas echoed the significance of addressing body image concerns previously noted by
the key informants.
The common experience among survivors provided information on the need for
social and emotional support. A Latina BC survivor stated,
Give more support in a way that um, there are a lot of people that are here and
leave all of the family in Mexico. And we are alone, we dont have anyone here.
Very few friends of sometimes we dont have friends. And we feel alone...I think
that yes, support. One needs support in many ways. Support, um to know that
someone is there present for hen one needs to talk with them...
Another survivor similarly expressed the importance of social support,
When you have someone that supports you in that its very important and I would
like to um for example I think that before the appointment you have or after or
another day individually be with someone and be able to talk with that person and
and even express ones feelings the emotions to say, I am tired today I didnt even
want to get up, today this... that someone could listen apart from the family. I
think that that to be able to let it all out with someone is important.
Having the ability to discuss your emotions can help with other psychological concerns
like depression. This may provide relief to the patient in that they are not burdening
family members with their distress and instead having an outlet through more appropriate
means, such as a therapist.
35


There are days that you feel bad that you cant. Anything makes you cry. In other
words until you can uplift that sadness and even at night I would feel and cry and
would wake up with my face all sweaty and Id cry cry and cry something that I
dont know why it happens...
Latina breast cancer survivors also identified that having discussions of available
resources would help. This is not uncommon due to the lack of resources available to this
population. When such resources are available, at least in the form of printed material
there appears to be agreement that the format of these sources are not literacy level
appropriate. Survivors suggested that their therapist should also discuss possible available
resources because they have a difficult time knowing where to find them. In addition,
spirituality was conveyed as an important component. Survivors described how their faith
was able to get them through their treatment experience.
Research Question 4
What do key informants and patients perceive as the most feasible mode of intervention?
Key informants and Latina BC survivors identified recommendations around
intervention timing, scheduling, and the modality of intervention delivery. Key
informants were asked if psychological support would be easily accepted by Latinas
diagnosed with breast cancer. The consensus is that an intervention would indeed help
patients. Oh I am sure it would help every patient...if every patient could see somebody
to discuss the stress of the whole thing. In addition, several key informants commented
that an intervention may have benefits such as increasing adherence, improving quality of
live, increasing psychological and social support. The following provider reflected on the
benefits of intervening with Latinas diagnosed with breast cancer.
36


I would think that it uh it would help them be more compliant. Be able, you know,
if certain things of their surrounding of the cancer experience is taken care of then
actually be... the road of cancer treatment itself might be less bumpy. ..The quality
of life. Im sure that the quality of life, no matter how you measure it is probably
the hardest thing to do. Uh, will increase. The other thing is just the satisfaction
for the provider of not being like frustrated all the time and dealing with all these
other issues all the time would be most appreciated...Cause then now I dont have
to be dealing with the patient that is falling apart in the clinic cause somebody
else is taking care of that, so great, you know we can move on and take care of the
stuff that Im supposed to be taking care of
Feasibility is another issue that must be considered when designing an
intervention. Key informants were asked whether offering psychological support to
Spanish-speaking patients would be feasible at the safety-net hospital. The results were
mixed due to logistical concerns among the respondents. Other than a few logistical
issues mentioned such as transportation, lack of space, timing between appointments, and
patient fatigue, all of the key informants expressed that an intervention could be feasible.
The feasibility of an intervention revolves around the intervention timing. Intervention
timing refers to when a therapist would first see the patient. Intervention timing was
advised to start anywhere from the first visit to after the surgery consultation. The
following key informants express differing opinions on the matter. And so I think the
same day youre there is critical because that day involves a high degree of anxiety, even
if its chronic visits, everybody gets anxious. The key informant is stating that having a
therapist come in on the day of diagnosis would be a feasible starting point. The
37


following key informant expressed concerns around having the initial visit on the
patients day of diagnosis,
My concern of the same day would be how really, how much are they really able
to absorb and deal with things when there are so many things going on at the same
time. At least that first initial visit might be a little trickier. Maybe on follow-up
visits that are a little bit more routine, you know, how are you doing with the
chemo, getting the refills, stuff like that. That probably would be a
better... Um... way to do it.
The agreement overall appears to follow the behavioral intervention around the
initial diagnosis visit and having the intervention continue throughout treatment.
Depending on the role of the key informant at the safety-net hospital, information such as
having the intervention around their breast clinic day seemed like the most appropriate
and feasible time for everyone involved. The reasoning behind this is due to the barriers
some of the patients face such as lacking transportation on days outside of breast clinic.
Breast cancer patients wait long hours for their appointment during the breast clinic day
and could be seen then. Several options were given such as scheduling patients before or
after their breast clinic appointment, during the breast clinic appointment, during
infusion, and also leaving it up to the patients preference. Each option was noted to have
its benefits and barriers but nonetheless there were several options.
Key informants and Latina BC survivors were asked about their opinion with
respect to the modality of intervention delivery. Specifically which modality would be
most feasible to provide; groups, one-on-one, telephone, or combination. There was
consensus from key informants around one-on-one mode of delivery. Latina BC
38


survivors, however, were flexible on the mode of delivery with some preferring face to
face, endorsing the mode of phone delivery, and others liking the idea of having had a
group while they were going through treatment.
I think that helping them have a counselor to that person and I think to even put
someone that has already lived it like they say a group that offers a group for them
to get together, the women we can get together, I say they I already feel like I
dont have anything. Um but a group where we can get together and feel at home
not not that wed always have to go out for example if I had had a person with
who I could have talked to and she would have been through the same, I think that
that would be easier for me if she had told me, this is what you will feel during
the first chemo, during the second, these are the effects you will feel. Yes, I think
if I had had a companion that had already gone through already lived it, then that
would have been easier.
This patient stated she would have benefited from being involved in a group. She also
mentioned the benefits of having a peer that has been through breast cancer treatment that
can walk her through her journey. Another patient we interviewed had been involved in a
group. She informed on the benefits and barriers of groups. For example she discussed
how at times people could not make groups and suggested the benefits to a phone
delivery intervention, Well it has been fine here. The reunion, but I also think that by
phone would be a good idea because if someone has a doubt at any moment they can use
the phone and call at that moment. Patients that preferred over the phone stated that
having phone interventions would be the easiest for them.
39


Of the patients that preferred one-on-one sessions, the benefits listed behind this
mode included getting to know the person, more personable method, and avoiding feeling
down by others atfect,
Well yeah, I think individually would be better than by telephone. Because there
are times when they are talking on the telephone and you are talking to the person
and you dont know who they are right? Mmm... well I think that individually
because if it would have been a group maybe I would have had to talk to women
that were sadder I would have gotten worse. If it would have been with women
with a lot of courage, positive maybe it would have helped me.
Overall, the agreement among Latina BC survivors is that they would have
benefitted from any form of intervention delivery. The most feasible appears to be by
phone, the desired may be groups due to learning about the experiences of others going
through the same, and the drawbacks that occur in groups may be avoided by having one-
on-one sessions.
Research Question 5
What cultural factors should be included in the psychoeducational and psychosocial
intervention for this population?
Key informants were asked what social or cultural barriers they perceive as
interfering with patients following treatment recommendations. Key informants perceive
that cultural health beliefs (e.g. fatalism and female modesty), low patient self-advocacy,
patients coping, competing responsibilities, and complimentary treatments play a role in
patients adherence to treatment.
40


Cultural health beliefs such as fatalism or myths in the community may influence
patients treatment adherence. For example, a key informant stated that they are still
learning about the myths in the community. The myth was that if you cut out a tumor or
go through a mastectomy... it will somehow manifest and spread. So some people are
resistant to having tumors cut out. Fatalism is another cultural beliefs that influence
treatment, a patient once told a key informant, Ill never be free from the cancer so Fm
never going to choose that route.
We identified in our study a theme we labeled patient self-advocacy. For the
purpose of our study, self-advocacy refers to when a patient engages in supporting
themselves (e.g. researching treatment options, communicating with their providers,
engaging in their self-care). Key informants recall that Spanish-speaking Latina patients
tend to ask limited number of questions, appear less engaged, and are often quiet. This
may be frustrating for providers at times because they have a difficult time identifying
whether the patient understood what was discussed.
Social factors weigh in just as much if not more than cultural factors. Treatment
barriers may include competing responsibilities for this population. Competing
responsibilities may include but are not limited to: childcare, finances, transportation,
relationships, work, house care, immigration status, insurance states, language, and
educational level.
I think its just their socio-economic background. You know, I think, in general,
the Latino, the immigrant population here in the U.S. is not the people who are
doing well in the city. Its like very rural Hispanic patients. I can tell just by their
Spanish... so you know that their background is probably poor and uneducated.
41


Another key informant described the difficulties with the patients role at home.
They are usually the caregiver and manage the home. Treatment may be interrupted not
only by the womans obligations at home but other logistical issues such as
transportation. Key informants described how their patients would have to take several
buses to get to the clinic for treatment. It is not a surprise that most patients also cope by
bringing their source of social support (family). Being aware and understanding the social
and cultural factors that may provide additional challenges for Spanish-speaking Latinas
diagnosed with breast cancer may influence their treatment adherence.
Interviewed Latina breast cancer survivors were asked if they had ever discussed
any cultural factors that were important with their providers. There were two patients
who did not discuss cultural factors with their providers. Overall, Latina breast cancer
survivors agreed that the inclusion of family, spirituality, and complimentary treatments
are very important cultural factors to consider when designing a psychoeducational and
psychosocial intervention for this population. Family was demonstrated as the most
common factor highlighted throughout the interviews. Including the family is important
for these women as they provide social and emotional support. They can also serve as
interpreters when there is a language barrier between provider and patient or when an
interpreter is unavailable. One patent stated that to her it was important to discuss
religion with her provider,
Yes, we did talk about, the religious of...that helps a lot too, in the religious, if
one goes to church and asks God and the family too. To me that was the most
important, family. Their support and I did talk to the doctor about this.
42


The interviews reveal that complimentary treatments are also popular among
Spanish-speaking Latina women. The women interviewed discussed herbs, teas, Reiki,
and supplements in addition to the western medical treatments they were receiving for
their diagnosed breast cancer treatments. However, one participant mentioned that
although complimentary treatments exist in the culture they do not necessarily discuss
this with their providers.
Um, doctors dont talk about Reiki. Only what is medicine. Sol would ask if I
could go...What also helped me was what is natural remedies. I used what is aloe
a lot. I used it a lot, I drank it a lot.. .Even if it were a tea that I was going to drink,
I always had to let her know what I was going to drink.
Spanish speaking Latinas diagnosed with breast cancer were also asked if there is
anything that would be especially important to consider or include in a program designed
to educate and support Latinas going through breast cancer treatment. Providing
emotional support, addressing financial concerns, providing patient navigators, and
content resources were important factors to include in a psychoeducational and
psychosocial program. The role of patient navigators facilitates the treatment experience
of the women. Several of the women interviewed commented on their gratitude for their
patient navigator. The women expressed that she had helped them through several
logistical issues such as transportation, finding resources, financial issues, and at times
was a source of emotional support. Two of the women interviewed discussed the need for
literacy level appropriate content resources such as brochures and better reading
materials, a lot of Hispanic women that cannot read and I think that when you give them
a book what they do is put it aside and forget about the book. The most common advice
43


given by the participants was to consider addressing emotional and financial concerns
when designing an intervention for this population.
Give more support in a way that, um, there are a lot of people that are here and
leave all of the family in Mexico. And we are alone, we dont have anyone here.
Very few friends or sometimes we dont have friends. Ad we feel alone. Always
support, economical support too uh, look for it because its also very difficult.
My husband would miss work a lot to be with me and because he missed so much
he would earn less and the costs were more difficult.
44


CHAPTER IV
DISCUSSION
The purpose of the this study was to gain a better understanding of the
experiences of Spanish-speaking Latinas diagnosed with breast cancer through
qualitative semi-structured interviews with Latina BC survivors and key informants
directly involved with the care of this population. In addition, a goal of the study was to
gather information specifically on the psychosocial and psychoeducational gaps for this
population to inform the creation of a feasible intervention to improve treatment
outcomes for these patients. Key informants and Latina BC survivors described their
experiences with respect to BC treatment, including the availability of resources,
educational needs, psychological struggles, and the social and cultural factors involved
with their treatment experience.
Key informants and Latina BC survivors described several gaps within the health
system, such as lack of adequate resources, communication difficulties, and treatment
barriers (e.g., transportation, finances, and child rearing) that influence treatment
outcomes for this population. In addition, not having any or insufficient psychosocial
support was also an identified as a gap for Spanish-speaking Latinas diagnosed with
breast cancer in this safety net hospital.
Recommendations for an Intervention for Spanish-speaking Latinos diagnosed with
Breast Cancer
Overall, key informants and Latina BC survivors described their treatment
experience as multifaceted and complex due to several contributing factors. They
provided information about several problems with respect to the psychosocial and
45


psychoeducational gaps affecting their treatment experience. For example, they discussed
issues including logistical difficulties (e.g., transportation, childcare), communication
barriers (e.g., literacy appropriate materials, patient-provider communication,
interpreters), reaction to diagnosis, treatment side effects, psychological distress (e.g.,
fear, anxiety, depression), and patient coping (e.g., emotional support and family
support). Key informants and Latina BC survivors suggested that an intervention should
specifically help patients overcome the identified barriers such as the ones previously
mentioned. Language barriers and low cancer literacy and education level was noted by
key informants and BC survivor participants as an important component to address due to
the amount of psychoeducation material available that is not adequate for this population.
Not all of the key informants were aware of the cancer resource center or available
resources for this population. Those who were familiar agreed that the information is not
literacy appropriate for this population.
Another commonly identified aspect of the treatment experience that should be
acknowledged in an intervention is facilitating communication between patients and
providers. Helping Latina BC survivors become empowered to ask questions is important
in order to inform their treatment options and decisions. Key informants noted that Latina
patients tend to be very quiet and do not ask very many questions which leaves them
confused as to how much information the patient actually grasped. It may be that the
journey, especially in the beginning, is extremely overwhelming and patients are unaware
of what information to ask about/for. Although not previously noted, there may also be
socio-cultural factors coming into play as well. For example, doctors may be viewed in a
paternalistic manor and therefore patients may follow any directions from their providers.
46


Key informants and Latina BC survivors are familiar with the functioning of the
safety net hospital with respect to the treatment of breast cancer. Given this, they also
provided additional recommendations for what an intervention program should consider
and integrate in the current health care system. For example, key informants and Latina
BC survivors identified systemic recommendations such as content, delivery, timing, and
scheduling of a behavioral intervention to better facilitate the implementation of a
feasible intervention. They specifically noted that content of an intervention should
include psychological support, psychoeducation, patient adherence, patient coping,
spirituality, body image, vignettes, and resources. They also recommended that the
program should be flexible given the barriers to treatment this population endures.
Delivery of an intervention was recommended in the form of telephone, face-to-face,
and/or groups. The intervention was thought to appropriately begin at diagnosis and to
consist of ongoing support throughout treatment. Scheduling should consider according
to the functioning of the breast clinic and other available times, again focusing on having
a flexible approach for this population. Key informants and patients have unique insight
into what is likely to make an intervention feasible or not, therefore it is important to
consider their specific recommendations when designing an intervention aimed at
Spanish-speaking Latinas diagnosed with breast cancer.
Extant culturally tailored interventions for Latinas diagnosed with breast cancer
(e.g., Napoles-Springer et al., 2008; Napoles et al., 2014; Badger et al., 2013; Sheppard et
al., 2008) stress the importance of culturally tailored interventions addressing the
psychosocial and psychoeducational needs of Spanish-speaking Latinas with breast
cancer. Consistent with prior research, the recommendations from the key informant and
47


Spanish-speaking Latina breast cancer survivors in our study reflect the need for
interventions that begin close to diagnosis, inclusion of providers that are culturally
competent, and language appropriate cancer information. Spanish-speaking Latinas and
key informants described a variety of barriers in their treatment such as transportation
difficulties, financial and insurance problems, and childcare needs. Moreover, it was also
suggested that the psychosocial needs of this population are consistent with previous
qualitative research studies.
Psychosocial support could be provided to this population through several means.
Groups, telephone, and one-on-one intervention were all endorsed. Key informants and
patient participants agreed that the interventionist could provide psychosocial support that
this population currently does not have much access to. Patients agreed that any form of
psychological therapy would be beneficial. However, there was a patient who had
experience with group therapy and expressed her concerns with group therapy. Among
the concerns listed were patient adherence to groups, additional barriers that impede
group attendance, and at times the emotional distress that may come from joining such
groups. On the plus side, other patients stated that it would be helpful to have a peer
guide them through the treatment journey. Key informants and survivors discussed the
unavailability of psychosocial interventions and resources appropriate for this population.
This information is not surprising given what we know from the literature on underserved
populations. In addition, key informants and survivors also provided insight into how an
intervention therapist may also provide psychoeducation to patients.
Key informants and survivor participants noted that intervention therapists could
also provide psychoeducation that is at the appropriate literacy level and may empower
48


the patient to ask their providers additional questions. Liu, Malin, Diamant, Thind, and
Malys (2013) study found that patient-centered communication and perceived self-
efficacy in patient-provider interaction were significantly association with patient
adherence with respect to tamoxifen and aromatase inhibitors therapy in low-income
women with breast cancer. Therefore, empowering women to communicate with their
providers, although challenging due to several previously mentioned barriers, may result
in better psychological and treatment outcomes for Spanish-speaking Latinas undergoing
breast cancer treatment.
In addition, addressing the unique sociocultural factors that act as psychosocial
barriers to treatment such as fear of recurrence, spirituality, anxiety and depression,
treatment side effects, and other beliefs and attitudes could provide a stronger
intervention specifically tailored for this population. The timing of an intervention
addressing these concerns is also extremely important. Napoles-Springer etal. (2008)
stated it is critical for interventions and psychosocial support to begin around the time of
diagnoses to relieve fear and anxiety. Insufficient psychosocial support has shown to
increase distress, lower emotional well-being, social disruption, and engagement in
avoidance behaviors and thoughts (Figueiredo, Fries, & Ingram, 2004).
Limitations
The design of this study prompted in-depth information from key informants and
Latina breast cancer survivors involved and/or affected by disparate care. Although the
information gathered from this research provided valued information and insight with
respect to the psychoeducation and psychosocial needs experienced by Spanish-speaking
Latinas diagnosed with breast cancer, there were some limitations to the study that should
49


be addressed. Researchers bias could have impacted the interview questions and
interpretation of the data. Steps were taken to address this issue. For example, the
researchers took caution by standardizing the coding procedures and interpretation of the
results during the data analysis to reduce researcher bias. The accuracy of the transcripts
was verified against the audiotapes. The transcripts were independently coded by two
bilingual research team members with previous experience analyzing qualitative data.
Next, discrepancies in coding were discussed and resolved by the research team. After
the transcripts were coded each researcher again reviewed the codes and themes. Finally
the research team held meetings to verify the codes and themes that emerged. These
codes and themes were also reviewed by the primary investigator.
An additional limitation to this study may also be the heterogeneity of the Latina
breast cancer survivors in terms of age, level of education, acculturation, and length of
time in the United States. For example, it is possible that women who have lived in the
United States and are more acculturated differ in their breast cancer treatment
experiences from those who are less acculturated. Research has identified differences in
cultural beliefs, language preference, and immigration status differences among
acculturation levels. Similarly there may also be differences in experiences among
different ages groups, education levels, and primary language spoken that the current
study did not explore. What is worth noting is how all of the participants agreed that any
form of intervention would be beneficial; telephone, group, or one-on-one interventions.
This consensus may reflect the need for any type of psychosocial support services,
although it could be due to the lack of knowledge regarding psychosocial intervention
formats. Only one of the participants had actually participated in a psychotherapy group.
50


However, they all agreed that for them any format would be feasible given the level of
unmet psychological and psychoeducational needs they experience.
Self-advocacy was a theme identified in this study. Key informants discussed
their experience with Latinas having lower self-advocacy compared to other ethnic
groups. Because we did not measure acculturation it is unknown whether low self-
advocacy is attributed to Latinas level of acculturation, lack of knowledge, ora
combination of factors. Studies have found that Latinas with higher acculturation level
also tend to have higher education (Sepucha, Feibelmann, Change, Hewitt, & Zoigas,
2014; Maly, Umezawa, Ratliff, & Leake, 2006). In addition, the literature suggests that
low acculturated Latinas tend to be less knowledgeable than Whites, are less likely to be
involved in decision making, are less satisfied with their decisions, and experience more
regret (Hawley, Griggs, Hamilton, et al., 2009; Hawley, Fagerlin, Janz, & Katz, 2008;
Hawley, Janz, Hamilton, etal., 2008). Sepucha et al. (2014) did not find support for their
hypothesis that acculturation scores are associated with decision quality (which was
measured through knowledge scores, decision process scores, and rates of concordant
care). In contrast to Hawley et al.s research, Sepucha et al.s study found that Latina
knowledge scores did not vary significantly by level of acculturation. The contradictory
findings may be attributed to the differences in knowledge and acculturation measures
used in the studies. Hunt et al. (2004) argued the complexity of acculturation and the
difficulties in measurement that provide additional challenges when assessing
acculturation properly. Overall, several studies have found that Latinas experience
considerable knowledge gaps (Sepucha et al., 2014).
51


Within-group differences among Latinas were not taken into consideration due to
the term Latina being loosely defined. In these cases level of acculturation, generation,
country of origin, etc. were not specifically discussed. Therefore, it is unknown whether
such differences would impact the recommendations of culturally tailored intervention
designed for this population. The patients interviewed were breast cancer survivors and
were asked to reflect back on their breast cancer treatment experiences. Possible recall
bias may result from such reports. Given that this population consisted of survivors, it is
unknown what the treatment experience was of those who did not survive. Perhaps they
could have provided additional information on the psychoeducation and psychosocial
needs in their journey. In addition, we were unable to interview patients with more
aggressive breast cancer stages such as stage IV or those who had a recurrence.
Therefore, future studies would benefit from input from patients representing various
stages and recurrences in the breast cancer range. Lastly, our study did not obtain the
perspectives of women who did not follow treatment. Their information could have
provided valuable insight into the psychoeducation and psychosocial gaps needed to
create an intervention that meets the needs of Spanish-speaking Latina breast cancer
patients.
Contributions and Future Directions
The results of this qualitative study contribute to the scarce literature on the
psychoeducational and psychosocial needs of Spanish-speaking Latinas with breast
cancer. By understanding the treatment journey and experiences of Latina breast cancer
survivors and key informants involved in their care, we can achieve a better
understanding of what gaps remain in the current psychological treatment care for
52


patients undergoing BC treatment. There is a need for more information on Spanish-
speaking Latinas diagnosed with breast cancer in the current literature. Currently, the
literature does not address comprehensive interventions that address the needs of this
specific population. Specifically, there is a dearth of interventions addressing the needs of
Spanish-speaking Latinas during diagnosis and treatment. This is concerning due to the
poorer physical and psychosocial outcomes this population experiences compared to
other ethnic groups. For example, Latinas breast cancer survivors report the lowest
health-related quality of life compared to all other ethnic groups (Ashing-Giwa etal.,
2007). In addition, high levels of sadness, depression, body image concerns, anxiety,
inadequate social support, difficulty with treatment side effects, and poor communication
with providers provides evidence that suggests that interventions targeted at Spanish-
speaking Latinas diagnosed with breast cancer are needed (e.g., Ashing-Giwa & Lim,
2010; Fatone et al., 2007; Hawley et al., 2008; Janz et al., 2009; Moadel et al., 2007;
Spencer etal., 1999). The current study focused on assessing the psychoeducational and
psychosocial needs of this population of patients diagnosed with breast cancer in order to
develop a culturally tailored intervention that targets their needs.
Overall, BC survivor participants of this study were very interested in discussing
their experiences with their breast cancer treatment experience from diagnosis through
the end of treatment. In addition, this study also gathered information on specific
recommendations that aided the development of the psychological intervention
specifically for this population. Information from key informants and Spanish-speaking
Latina breast cancer survivors provided valuable insight into how an intervention may
work in the current health care system. This study could help guide future researchers by
53


aiding them in the process of creating and implementing culturally tailored intervention
for Spanish-speaking Latinas undergoing breast cancer treatment. In addition, the
information gathered from this study adds to the understanding of the treatment
experience and barriers faced by low-income Latinas in general.
Future research should build upon this study by investigating and addressing the
wide range of factors affecting Spanish-speaking Latinas with breast cancers experience.
The psychosocial difficulties experienced by this population should also be paid
particular attention given the lack of information in the literature. Culturally tailored
interventions that could address and ameliorate the insufficient and low-quality cancer
information for Latinas with breast cancer along with psychosocial difficulties
experienced could mean better quality of life and treatment related outcomes for this
population. A systematic review by Yanez, Thompson, and Stanton (2010) found that
Latinas were more likely to report poorer quality of life (QOL) in the domains of mental,
physical, and social compared to non-Latina Whites and Blacks. Interventions for this
specific population are needed and there are very few undergoing randomized controlled
trials (Napoles etal., 2014). Therefore, researchers must continue to devise, implement,
and evaluate interventions in order to improve the quality of life and reducing distress for
Spanish-speaking Latinas with breast cancer while providing them with literacy level
appropriate breast cancer psychoeducation.
54


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APPENDIX A
Key Informants Interview Questions
We are designing a program to help Latina patients with breast cancer at Denver Health
to better understand their diagnosis and treatment. Such 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 behest
fulfilled.
1. What resources are currently available for Spanish-speaking breast cancer patients to
educate them about their diagnosis and treatment? (Ex: Educational resources, Patient
navigation)
If Yes: Do all providers know about these services? Are patients informed about
these services during their visits?
2. 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?
3. We would like to know your opinion about whether any of the following modes of
providing information about breast cancer diagnosis and treatment be of interest to
Spanish-speaking patients and why do you think they would be effective means of
conveying information:
a. Would pamphlets or brochures be of interest and how can these be effective?
b. Would audiovisuals such as videos be of interest and how can these be
effective?
c. Would computer CDs/DVDs be of interest and how can these be effective?
d. Which of the above do you think would be the most effective and why?
e. Are there any other means of providing information that you think would be
effective?
4. What resources are currently available for Spanish-speaking breast cancer patients to
help them cope with psychological struggles such as anxiety and depression related to
their diagnosis and treatment? (Ex: social workers, counselors, outside referrals)
If Yes: Do all providers know about these services? Are patients informed about
these services during their visits?
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5. In your opinion, what are the most salient gaps or holes in the current psychological
or mental health support for Spanish-speaking breast cancer patients?
6. What social or cultural barriers do you perceive as interfering with patients following
treatment recommendations? (e.g., family dynamics, health beliefs)
7. Do you think that offering psychological support would be easily accepted by this
population? Why or why not?
Probe if not mentioned: Do you believe that they would be open to speaking to a
third party about their emotional struggles related to their diagnosis and
treatment?
8. Do you think that offering psychological support to Spanish-speaking patients would
be feasible at Denver Health? Why or why not?
Probe if not mentioned: Do you believe that health care providers and other staff
would be supportive of offering this additional service to patients on top of their
treatments?
Probe if not mentioned: Do you anticipate that health care providers and other
staff would refer patients to these additional services?
9. If psychological support was offered to Spanish-speaking patients, which of the
following modes of delivery do you think would be most feasible to provide?
a. Meeting with patients in groups? (Probe: why? for what reasons?)
b. Meeting with patients one-on-one before or after their office visits?
(Probe: why? for what reasons?)
c. Meeting with patients one-on-one at another designated time? (Probe:
why? for what reasons?)
d. Working with patients by telephone? (Probe: why? for what reasons?)
i. What do you see as the potential drawbacks and benefits of each of
these intervention formats?
ii. Do you think that a combination of methods would be feasible and
usefijl?
10. At what point during treatment should psychological support begin?
a. At what point along the cancer care continuum should the intervention
end?
11. 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)
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12. How would you gauge the success of an intervention
to Spanish-speaking patients with breast cancer?
providing psychological
support
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APPENDIX B
Patient Interview Questions
We are designing a program to help newly diagnosed Latina breast cancer patients at
Denver Health better understand their diagnosis and treatment plan and improve their
quality of life by providing emotional support and teaching coping skills to help with this
difficult experience. 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 what your experience was like while you were going through treatment. We
also 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 helptul 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. We would like to know your opinion about whether any of the following modes
of providing information about breast cancer diagnosis and treatment be of
interest to patients like you and why do you think they would be effective at
providing information:
a. Would pamphlets or brochures be of interest and how can these be effective?
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b. Would audiovisuals such as videos be of interest and how can these be
effective?
c. Would computer CDs/DVDs be of interest and how can these be effective?
d. Which of the above do you think would be the most effective and why?
e. Are there any other means of providing information that you think would be
effective?
6. 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?
7. 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?
8. 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 had an opportunity to speak to a counselor....
a. Would you prefer to meet with a counselor individually face-to-face
before or after your appointments or at another designated time? (why?)
b. Would you prefer to talk over the phone with a counselor? (why?)
c. Would you prefer 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?
9. 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.)
a. Why or why not?
b. Is there anything you wish your doctor had known about your culture
during your treatment?
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10. 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?
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 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. ForMDs: What year did you finish your residency program?___________
6. ForRNs: When did you finish nursing school or advanced practice training (i.
7. Gender: Male
Female


APPENDIX D
Patient Socio-demographic Questionnaire (English and Spanish)
AYUDA: A Training Program to Improve Breast Cancer Outcomes among Latina
Patients
Section I
1. Your age?________[Years]
2. In what country were you bom? __________________________________
3. How long have you lived in the United States? ____All my life _____years
4. Your current marital status? [Circle one]
Never married Married Divorced Separated Living Partner
Widowed
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 $1,0000 $1,001 $2,000 $2,001 $3,000 $3,001 $4,000 More than
$4,001
9. How many people live in your household? ___________
10. What is your zip code? ___________
11. Where did you do most of your schooling? Latin America _______or USA_____
12. Place an X in the box that best described the highest level of education you
completed:
High School
College
Post
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Grade School
Graduate
1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4

Section II
1. When were you first diagnosed with breast cancer? ______month ______year
2. What was the stage of your diagnosis? __Stage I,__Stage II,___Stage III,___Stage
IV
3. Did you have surgery? Yes No Pending
4. Did you have chemotherapy? Yes No Pending
5. Did you have radiation therapy? Yes No Pending
6. Did you have biological therapy? Yes No Pending
Section HI
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 Mostly in Equally in Latin-America Mostly in the
Only in
Latin-America Latin-America and the USA USA
USA
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4.1s your current circle of friends->
Almost all Mainly Equally Hispanics & Mainly Non-
Hispanics/ Hispanics/ Non-Hispanics from Hispanics from the
Latinos Latinos the U.S.A. U.S.A.
5. In relation to having an Hispanic/Latino background, do you feel->
Very Proud Proud Somewhat Proud Little Pride
Almost all
from USA
No Pride
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AYUDA: Un Programci de EntrenamientoparaMejorar los Resultados
del Cancer del Seno en Pacientes Latinas
SeccionI
1. ^Cuantos anos tiene?_______________________
2. 6Cual es su pais de nacimiento?________________________________
3. 6Cuanto tiempo ha vivido en los Estados Unidos? ________anos_________Toda
mi vida
4. ^Cual es su estado civil actual? (por favor encierre su respuesta en un circulo).
Soltera (nunca casada) Casada Divorciada Separada Co-habitante (vive con
pareja) Viuda
5. 6Esta usted actualmente trabajando?__Si____No 6Esta usted retirada?______Si_____No
6. 6Cual es/fue su ocupacion?_________________________
7. ^Tiene usted: Medicare?_____si no Medicaid?________si no Aseguranza
privada? __si no
8. Encierre en un circulo la cantidad que mejor describa el ingreso total por mes de
su familia:
Menos de $1,000 $1,001 $2,000 $2,001 $3,000 $3,001 $4,000
Mas de $4,001
9. 6Cuantas personas viven en suhogar?________
10. ^Cual es sucodigo (zip code)?_______
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11. ^Donde curso usted la mayor parte de su educacion? Latino America_ o
USA
12. 6Por favor ponga una 'X' en el cuadro que mejor describa el nivel mas alto de
Seccionll
1. Cuando fue diagnosticada con cancer del seno? _____mes ______ano
2. Cual fue la etapa de su diagnostico? _Etapa I,__Etapa II,____Etapa III,
Etapa IV
3. Le realizaron una cirugia/mastectomia? ________Si No
Pendiente
4. Le dieron quimioterapia? ____Si No
Pendiente
5. Le dieron radioterapia? ____Si __________No
Pendiente
6. Le dieron una terapia biologica? ____Si No
Pendiente
Seccion IE
1. Usted habla--->
Solo Espanol mejor Espanol e ingles Ingles mejor Solo ingles
espanol que ingles igualmente bien que espanol
80


2. Usted lee>
Solo Espanol mejor Espanol e ingles Ingles mejor
espanol que ingles igualmente bien que espanol
3. Paso su edad temprana [ninez y adolescencia] en>
Solo en
Latino
America
La mayor
parte
en Latino
America
Igualmente en Principalment
Latino America y e
en USA en USA
4. Actualmente su circulo de amigos es >
Casi todos
son
Hispanos/
Latinos
La mayoria
son Hispanos/
Latinos
Igualmente
Hispanos
y anglos de USA
La mayoria
son anglos de
USA
5. Tener origen hispano o latino hace que usted se sienta >
Muy Orgullosa Algo orgullosa Poco orgullosa
orgullosa
Solo ingles
Solo en
USA.
Casi todos
anglos de
USA
Nada
orgullosa
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Full Text

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EXAMINING THE PSYCHOEDUCATIONAL AND PSYCHOSOCIAL NEEDS AND RESOURCES OF LATINA WOMEN WITH BREAST CANCER By TATTIANA ROMO B.A., COLORADO MESA UNIVERSITY 2010 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 Program 2015

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2015 TATTIANA ROMO ALL RIGHTS RESERVED

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ii This thesis for the Master of Arts degree by Tat tiana Romo Has been approved for the Clinical Health Psychology Program b y Evelinn Borrayo Chair Kristin Kilbourn Kevin Everhart February 19, 2016

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iii Tattiana Romo (M.A., Clinical Health Psychology) Examining the Psychoeducational and Psychosocia l Need s and Resources of Latina Women with Breast Cancer Thesis directed by Professor Evelinn Borrayo ABSTRACT Interventions that address the psychoeducation and psychosocial needs of Spanish speaking Latinas with breast c ancer are almost non existent. This st udy explores the experiences and needs of Spanish speaking Latinas undergoing breast cancer treatment to inform the creation of targeted interv entions that meet their needs. In this study seven key informants and seven Spanish speaking Latina breast canc e r survivors were interviewed. Data were analyzed using ethnographic content analysis. Key informants and Spanish speaking Latina survivors described experiences t hrough diagnosis and treatment. In addition, they provided information on the psychosocial and psychoeducational gaps that exist in the current healthcare system. Key informants provided additional information on their roles as providers and on the existent resources available to this population. Specific recommendations for a culturally and lingui stically targeted psychosocial and psychoeducational intervention for Spanish speaking Latinas diagnosed with breast cancer were g athered from the participants. Recommendations included suggestions for the psychoeducational and psychosocial content of the intervention and relevant program factors to consider when cre ating a feasible intervention. The results from this study will inform the development and implementation of a psychosocial and psychoeducational intervention at a safety net hospital in Denver, Colorado for Spanish speaking Latinas diagnosed with breast cancer. The form and content of this abstract are approved. I recommend its publication.

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iv Approved: Evelinn Borrayo

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v DEDICATION This thesis is dedicated to my family. To my parents Sergio an d Maria Romo, through your love and hard work, you have both been inspirations to me. I hope this is only one of the many ways I can make you proud. To my bother Sergio Jr. and sister Deedee Romo, what would I do without you? Both of you have helped sup port me and helped me raise my daughter Milly. Without you, I could never have achieved this goal. To John Heuton, your love, support, and encouragement to keep going when I felt like quitting has been your greatest gift. To Miliyani, my sweet heart, yo u are the reason for all of the hard work. I hope what I do pales in comparison to everything you accomplish in your life. I love you all and thank you for your love, inspiration, and support.

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vi ACKNOWLEDGEMENTS I would like to start off by acknowle dging my labmates, Ava Drennen and Jennifer Nguyen We worked very hard and learned how time consumi ng qualitative studies can be! Thank you for the hard work you all put into my thesis. T o m y advisors and thesis committee: Evelinn Borrayo Kristin Kilbour n, and Kevin Everhart, y our guidance, mentorship, and patience have made this achievement possible. Thank you for teaching me what it means to be a researcher. Lastly, I would like to thank my cohort: Jo Vogeli, Shiva Fekri, Lacey Clement, and Ka ile Ross I am grateful for the love and support you have provided You hold a special place in my heart and I hope that we continue to share our struggles and above all our successes.

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vii TABLE OF CONTENTS CHAPTER I. BACKGROUND Social Determ inants Affecting Health Disparities among Latinas .......................... 3 P sychosocial Interventions for Breast Cancer Patients ................................ .......... 11 Psychosocial Interventions for Latina Breast Cancer Patients .............................. 14 Summary ................................ ................................ ................................ ................ 17 Research Questions ................................ ................................ ................................ 18 II. METHOD Participants ................................ ................................ ................................ ........... 20 Procedures ................................ ................................ ................................ ............ 21 Analyses ................................ ................................ ................................ ............... 2 2 III RESULTS Research Question 1 ................................ ................................ ............................... 24 Research Question 2 ................................ ................................ ............................... 2 7 Research Question 3 ................................ ................................ ............................... 30 Research Ques tion 4 ................................ ................................ ............................... 3 6 Research Question 5 ................................ ................................ ............................... 40 I V. DISCUSSION Recommendations for an Intervention for Spanish speaking Latinos diagnosed with Breast Cancer 45 Limitations ................................ ................................ ................................ ............. 49 Contrib utions and Future Dire ctions ................................ ................................ ...... 52

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viii REFERENCES ................................ ................................ ................................ ................. 5 5 APPENDIXES ................................ ................................ ................................ .................. 6 9 A. Key Informant Interview Questions ................................ ................................ 6 9 B. Patient Interview Questions ................................ ................................ ............. 7 2 C. Key Informant Socio Demographic Questionnaire ................................ ......... 75 D. Patient Socio Demographic Questionnaire (English and Spanish) ................. 76

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1 CHAPTER I BACKGROUND Breast ca ncer (BC) is the leading cause of cancer death among Latinas in the United States. The 5 year survival rate for non Latina White women with breast cancer is 88.6% whereas it is 87% for Latinas (American Cancer Society, 2014). Although Latinas have lower br east cancer incidence rates compared to non Hispanic White and African American women, they are more likely to be diagnosed with larger breast cancer tumors and at later stages, consequently, Latinas tend to have poorer survival from the disease (American Cancer Society, 2013) However, differences in stage at diagnosis alone do not account for disparities in cancer survival, adequate treatment follow up or adherence al ., 2009). Inadequate treatment adherence such as skipping or missing chemotherapy and radiotherapy can lead to poorer BC outcomes and increased risk of recurrence or disease progression (C olorado C ancer C oalition 2011). Several factors have been found to influence treatment adh erence and/or delay treatment. Socioeconomic factors (e.g. lack of insurance), poor patient provider communication, and language barriers are among the common factors that add to the barriers for treatment (Fedewa et al., 2011; Vona Davis & Rose, 2009; Freedman et al., 2011) Behavioral and psychosocial factors also play a role in treatment adherence (Ashing Giwa, Padilla, Bohr quez, Tejero, & Garcia, 2006). If ial needs could possibly lead to improvements in their treatment completion. may shed light on what psychosocial issues may affect treatment a dherence. Breast

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2 cancer treatments aff ect women physically, psychologically, and socially. Armstrong (2003) coined the term symptoms experience and described it as including the number of symptoms, its severity, and the distress these symptoms cause for women. A meta analysis study conducted b y Denieffe and Gooney (2011) found that the symptoms experience for women with breast cancer affects the self in that the self image and self control are distressed Breast cancer not only impinges on the self image of a woman but also results in feeling d iscredited, losing control over their lives, losing personal auton omy, and losing certain roles. Overall, the literature is limited on the particular experiences of Latinas undergoing BC treatment. However, a few studies seem to suggest that Latinas BC pat ients experience significant distress and unmet medical needs, lack adequate social support, and receive less treatment and survivorship information than other women (Luckett et al., 2011; Ell et al., 2005; Ashing Giwa & Kim, 2009; Elder, Ayala, Parra Medi na, & Talavera, 2009; Ashin g Giwa et al., 2004; Ashing Giwa et al., 2007; Ell et al., 2002; Janz et al., 2008). In addition, a systematic review conducted b y Yanez, Thompson, and Stanton (2011) reported that Latina breast cancer patients were more likely t o report poor mental, physical, and social quality of life compared to non Latinas. When compared to non Latina Whites and African Americans, Latinas reported poorer quality of life in the doma i n of mental health (Yanez et al., 2011) Unfortunately, these Latina patients do not receive the psychological assistance that they need to address issues of concern (Buki et al., 2008). Such a gap in assistance is likely related to the social determinants of health that typically explain the health disparities that affect the medically underserved such as lack of adequate access to health care services.

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3 Social Determinants Affecting Health Disparities among Latinas Health Care Access Previous studies have found that Latinas are faced with multiple barriers in a cce ssing health care services. Such barriers include lack of insurance, lower socioeconomic status, lower rates of health insurance coverage, and less education ( Fedewa et al., 2011; Vona Davis & Rose, 2009; Ashing Giwa & Kim, 2009; Rodriguez, Ward, Perez Sta ble, 2005; Ashing Giwa et al., 2006; Amer ican College of Physicians, 2010 ). In addition the American College of Physicians (2010) reported that after adjusting for insurance status and income, ethnic minorities tended to have less access to health care an d lower quality health care than non minorities. According to the Center for Disease Control and Prevention (2012), Latinos are the least likely ethnic group to be insured. Along with the lack of insurance, Latinas face other healthcare access barriers suc h as transportation, family demands, and lack of trust with providers (Ashing Giwa et al., 2006). Health disparities within the Latino population may also be explained by cultural differences. Although there is substantial research examining health dispa rities among Latinas with breast cancer, only a few have set out to understand the influence of cultural beliefs on healthcare access. Several researchers have identified language as a common barrier to health care access. Approximately 1 in 5 Spanish spea king Latinos reported not seeking medical care because of language barriers (American College of Physicians 2004 ). Latinos with language barriers have difficulty seeking medical services, receive lower quality healthcare, and have greater chances for expe riencing negative health outcomes (Ashing Giwa et al., 2006) Buki et al. (2008) conducted a qualitative study in

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4 which they interviewed Latina breast cancer survivors to examine their experience from diagnosis to long term survivorship and found that some survivors did not fully understand why they had been given certain treatment and wished that their physicians had been Spanish speaking. Not only does language act as a barrier, but a lack of acculturation into the U.S. can hinder access to health care an d treatment adherence. Acculturation Acculturation is an important factor in our understanding of health disparities among Latinas. Studies have found that Latinas who are low acculturated are more likely to strongly endorse the cultural beliefs of their cultural origin. Acculturation level has been associated with psychological distress among breast cancer women of Mexican ancestry (Thompson & Hoffman Goetz, 2009). Less acculturated Latinas may experience barriers related to language proficiency and have less involvement in decision making (Hawley et al., 2008). Latinas who have recently immigrated might find it difficult to adjust to medical treatment s common in the United States. They may experience stressors due to language barriers, isolation from the ir support system, and have fewer social relationships (Insa f, Jurkowski, & Alomar, 2010). Low acculturated Latinas tend to resort more to the traditional medicin e of their countries of origin. These medical practices include priests, curanderos (healers), and herbal remedies (Ashing Giwa et al., 2006). Latinas who are high in acculturation might be better educated and have more knowledge of the U.S. mainstream med ical system. Latinas born in the United States are more likely to adapt to Western culture n aturally and understand the medical practices of the country. They are more likely to perform breast self exams, obtain mammograms, and adhere to medical treatment (Ashing Giwa et al. 2006). Understanding the how acculturation

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5 influences Latinas percepti ons of breast cancer can help create interventions more suitable for this population. Cultural Beliefs The growing body of literature on Latinas and breast cancer screening has shed light on some of the beliefs that Latinas have about breast cancer The cultural beliefs identified in the literature appear to contribute in part to Latinas being diagnosed at later stages of breast cance r. Understanding the role cultural beliefs might help explain the lack of breast screening practices and how they may pote ntially influence treatment adherence (Buki, Borrayo, Feigal, & Carrillo, 2004) Cultural beliefs that delay screening and potentially treatment adherence include the belief that breast c ancer is a symptomatic illness. Under a symptomatic illness belief, Latinas are reluctant to believe that they have BC unless they have obvious physical symptoms (e.g., pain, lumps), meaning that in the absence of symptoms they may not follow up with BC treatment. Other c ultural beliefs that are relevant to breast cancer treatment adherence might include fatalistic beliefs. For example, if a Latina believes that breast cancer is an illness treatment recommendations. Studies have found that many Latina w omen believe that breast cancer certainly leads to death and therefore are reluctant to discuss breast cancer (Luquis & V illanueva Cruz, 2006). body can cause feelings of s hame. For example, if a Latina has a male oncologist she might be too embarrassed to keep her medical appointments. Borrayo et al. (2005) identified that women feel threatened by treatment and the possibility of l osing their feminine identity. Because many Latinas are unfami liar with their treatment options, the

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6 majority believe that breast cancer is treated through mastectomy. They associate the loss of a breast with the lo ss of their feminine identity. Ashing Giwa et al. (2006) found that women were afraid of losing their j obs and immigration status if they adhered to treatment. The value of famialismo, the strong interdependence with family, is an important factor that c an affect treatment adherence. Latinas worry about putting their family through psych ological and finan cial turmoil. Key informants in the Ashing Giwa et al. (2006) study reported that in order to avoid family turmoil many Latinas tend to ig nore their own health concerns. In addition, some Latinas will endure their symptoms and rely on homeopathic remedies rather than interrupting their familiar priorities while others put off treatment because they believe it will disrupt the lives of those around them (Ashing Giwa et al., 2006). These threatening beliefs cannot only hinder treatment adherence but can cause psychological distress. Psychoeducation Needs The literature suggests that psychoeducation is an effective psychosocial intervention approach for cancer patients (Dastan & Buzlu, 2012) Psychoeducational interventions help address the emotional concerns such as distress, that may be caused by being overwhelmed and/or confused (Galway Black, Cantwell, Cardwell, Mills, & Donnelly, 2012) Informational needs have been identified for Latinas with breast cancer. Appropriate information in Spanish on breast cancer, treatment, treatment side effects, and treatment management can help prevent fatalistic beliefs and dispel the myths that exist within this population ( Napoles Springer et al., 2009). Low literacy among Latinas cannot only impede access and adhere nce to treatment but can account for treatment

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7 decisions that are misguided. In various studies women have expressed their treatment decision regrets (Hawley et al., 2008; Katz et al., 2005; Maly, Umezawa, Ratliff, & Leake, 2006) Recent findings stress th e importance of providing psychoeducation in interventions targeted at Latinas with breast cancer. breast cancer enhances their ability to participate actively in the decision making process for medical care and to manage th eir medical conditions better. This can lead to improved clinical outcomes, better quality of life, and decreased morbidity and mortality (Chen et al., 2008). Ashing Giwa et al. (2006) found that low acculturated Latinas reported difficulty understanding and processing information breast cancer information provided in the medical care setting. The literature suggests that education about cancer may decrease psychological distress experience in cancer patients (Mesters, Borne, De Boer, & Pruyn, 2001). Ha wley and colleagues (2008) conducted a study examining the degree to which Latina women with breast cancer participated in informed surgical breast cancer treatment decision making compared to other race/ethic groups They also evaluated the factors associ ated with the desired amount of involvement and informed decision making for surgical breast cancer treatment. Women were asked if they had too much, just the right amou nt, or too little involvement. Decision satisfaction and regret were each assessed. The findings suggest that Spanish speaking Latinas were slightly less likely to report a patient based decision than patients in any other group, and were slightly more likely to report too little involvement than patients in other groups. Without adjusting f or other factors, Spanish speaking Latinas were 9.4 times more likely than Caucasian wo men to report decision regret. When other factors such as health literacy, translation

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8 services, or presence of family or friend at treatment decision were controlled fo r, the odds ratio reduce d to 5.6 for decisional regret. This study found that Spanish speaking Latinas had very high dissatisfaction and a lot of regret and this was reported significantly more often than women of any other group. Furthermore, women with l ow health literacy were significantly more likely than those with high health literacy to report both decisi on dissatisfaction and regret. Presence of a family member or friend during the treatment decision was associated with less treatment dissatisfactio n (Hawley et al., 2008). In conclusion, the literature seems to suggest that a match between actual and desired involvement in decision making is important for satisfaction with the decision and treatment outcomes. Hawley added that language barriers and poor patient provider communication may be related to poor decision outcomes in Latina women with low acculturation. Latinas with low acculturation expressed a desire for more information (Hawley et al., 2008; Sheppard et al., 2007). Psychosocial Needs Substantial research has documented the impact of cancer and its treatment on quality of life (QOL) Primary factors that affect QOL include pain, fatigue, anxiety and depression to name a few. Research has also found that ethnic minorities and/or unders erved populations are at greater risks for developing high levels of psychological distress ( Luckett et al., 2011; Badger et al., 2013; Eversley et al., 2005; Culver et al., 2004; Moadel et al., 2002; Moadel et al., 2006; Spencer et al., 1999). Psychologic al interventions for breast cancer in general show benefits in reducing anxiety and mood disturbances (Jassim et al, 2013) Jassim et al. (2013) concluded in that there are several

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9 benefits for non metastatic breast cancer patients who participated in psyc hological interve ntions. Such benefits included reductions in anxiety and mood disturbance. Other outcomes measured in the literature, such as QOL, stress, distress, coping and adjustment, are difficult to assess due to the variation of the psychological o utcomes termino logy used. A recent systematic review concluded that Latinas tended to experience poorer quality of life outcomes in mental, physical, and social domains than women of other ethnic groups (Yanez, Thompson, & Stanton, 2011). Moadel and collea gues (2006) assessed the needs among underserved ethni cally diverse cancer patients. A total of 248 oncology outpatients participated in this study (48% non Hispanic whites, 25% African Americans and 19% Hispanic). Ninety six percent participants had high school de gree. The researchers identified that the needs were primarily informat ion needs followed by support. Supportive needs for their population included emotional needs, coping support, and stress management. Furthermore, Hispanic cancer patients repo rted the highest number of needs acro ss all of the domains studied. The purpose of assessing the needs was to guide the development of future int erventions for these patients. Moadel and colleagues advise forming culturally informed psychosocial interventi ons to improve the quality of life for ethnically diverse patients. BC patients experience psychological distress that comes with a breast cancer diagnosis, but also lif e, pain, and sexuality issues. Latinas in particular tend to report more emotional dis tress, sexual disruption, and social disruption (Spencer et al., 1999). Latinas interviewed in a study conducted by Napoles Springer and et al. (2009) reported that the psychosocial needs included issues concerned with fear of dying and the need for suppo rt with anxiety. Women were also faced with a sense of powerlessness during

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10 diagnosis and treatment. For example, women felt that they would not ask their physicians questions because of time constraints and lack of information in Spanish. Latina breast c ancer patients have expressed the emotional toll that a breast cancer diagnosis produces. Behavioral interventions have been created as an outlet for emotional exp ression (Fatone et al., 2007). Although these needs have been expressed, Latinas are hesitant about seeking psychological services due to associating psychological need with mental illness and the belief that if they need a mental health provider, they must be mentally unstable (Ashing Giwa et al., 2006). There is a considerable number o f meta a nalysis and systematic reviews on behavioral interventions that have provided evidence that such interventions are effective addressing the psychosocial needs of cancer patients including of BC patients ( Raingruber 2011; Jacobsen & Jim, 2008; Osborn, Dem oncada, & Feuerstein 2008; Williams & Dale, 2006; Zabalegui, Sanchez Sanchez, & Juando, 2005; Chow, Tsao, & Harth, 2004; Uitterhoeve, Vernooy, Li tjens, et al., 2004; Rehse, & Pukrop, 2003) According to the existent meta analyses and reviews, a limited n umber of articles have focused on the effectiveness of psychosocial interventions for ethnic minorities and underserved cancer patients specifica lly Latinas with breast cancer. The literature highlights the importance of psychoeducation and psychosocial n eeds for Latinas with breast cancer. Addressing psychoeducational needs can benefit Latina breast cancer patients in that they might make better treatment decisions, understand what their physician is explaining, advocate for themselves, and improve treatm ent adherence The psychosocial benefits of behavioral interventions for Latinas with breast cancer include: helping them express their emotions, helping patients feel understood in their cancer

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11 experience, reducing anxiety and depression, and helping pati ents learn to communicate better with physicians. Psychosocial Interventions for Breast Cancer Patients A recent systematic review assessed the efficacy of psychological interventions on the psychological well being of non metastatic breast cancer patie nts. This review included twenty eight randomized controlled trials comprising of 3940 participants (mostly Caucasian participants) The interventions investigated included a variety of delivery methods including group setting, one on one between a therapi st and patient, and couples therapy. Control groups also varied in that they could provide a placebo, waiting list control or an alternative form of intervention such as providing patients with educational leaflets, access to semina rs, and/or relaxation cl asses. Twenty four trials investigated cognitive behavioral therapy while the other four trials investigated psychotherapy counseling against controls. The mean standard deviation duration of the intervention was 14 9.65 hours with a median of 12 (maximu m 39 hours and minimum 1 hour). The majority of interventions wer e delivered on a weekly basis. Assessing outcomes (anxiety, depression, and quality o f life) varied across studies. In general, the results suggest that women who received cognitive behavior therapy delivered in groups showed reductions in depression, anxiety, and mood disturbance compared to the control group. With respect to quality of life, only the individually delivered cognitive behavioral intervention showed significantly better quality of life when compared to the control group Two group delivered studies revealed a non significant overall survival benefit in favor of cognitive behavioral therapy. The four studies comparing psychotherapy to control were identified as high risk bias and thus proved difficult to formulate

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12 conclusions for the efficacy of psychotherapy (Jassim, Whi tford, Hickey, & Carter, 2015). In addition, short term, interventions (defined as less than 20 hours) were found to be more effective in reducin g anxiety and moo d disturbance. Caution is advised when interpreting these results as there were only a handful of long term interventions evaluated in this study. The findings of this systematic review confirmed that cognitive behavioral therapy was the most frequently us ed approach in studying the effect of psychological intervention in cancer patients (Moyer, Sohl, Knapp Oliver, & Schneider, 2009; Redd, Montgomery, & DuHamel, 2011) and that it is considered a valuable method for relieving distress in various cancer popul ations (Mundy, DuHamel, & Montgomery, 2003), and amongst breast cancer patients (Tatrow & Montgomery, 2006). Matsuda, Yamaoka, Tango, Matsuda, and Nishimoto (2014) explored the effectiveness of psychoeducational support on quality of life among early sta ge breast cancer patients. This study was a systematic review and meta analysis of randomized controlled trials of English language tri als only. The review included a total of eight randomized controlled studies (610 patients vs. 549 control patients ). The researchers observed the mean differences at less than six months post in tervention with control group. The primary outcome measured was Global Health Status/QOL scale (Global QOL), and secondary outcomes were the subscales of QOL. The results indicate th at psychosocial support was effective in improving breast cancer symptoms with the 6 months post intervention. Psychoeducational approach within the psychosocial support interventions was also found to increase emotional well being with in 6 months post int ervention. However, this was not the case for other psychosocial support interventions excluding psychoeducation In addition, this study did not find that psychosocial support

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13 interventions provided a significant improvement in Global QOL in early stage b reast cancer patients. Despite these findings, Matsuda and colleagues (2014) noted that there were improvements in Global QOL and subscale scores as a result of psychosocial support interventions. Therefore, it is important to assess QOL of breast cancer p atients who receive psychosocial support (Matsuda et al., 2014). Naaman, Radwan, Fergusson, and Johnson (2009) evaluated eighteen randomized controlled studies to inform the overall efficacy of psychological interventi ons in breast cancer patients. Anxiety depression, and quality of life were the primary outcomes. In addition, the researchers were interested in the moderating effects of breast cancer stage, treatment type, duration, and orie ntation on treatment efficacy. The study found that interventions had mode rate effects on improving QOL. Individual and group interventions were associated with moderate improvements in anxiety and depression. Short term, coping focused interventions (less than 20 hours) were especially beneficial for early stage breast cancer patients. In contrast, longer term interventions with an emphasis on support were most beneficial for patien ts with advanced breast cancer. When comparing levels of anxiety and depression, patients with greater levels of distress appeared to benef it more than patients who particip ated as a preventative measure. In addition, group psychotherapy appeared to be superior to individual therapy in the treatment o f both anxiety and depression. Despite the promising findings of randomized controlled studie s aimed at breast cancer patients, medically underserved patients, such as Latinas, are not adequately represented in such interventions.

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14 Psychosocial Interventions fo r Latina Breast Cancer Patients Psychosocial i nterventions have been found effective and beneficial for BC patients However, these interventions are not specifically relevant for Spanish speak ing Latinas with breast cancer. Only a few telephone, one on one, and group interventions target Latinas with breast cancer. Napoles Springer, Orti Mendez (2008) conducted a formative study to develop a culturally competent peer support intervention for Spanish speaking Latinas diagnosed with breast cancer. Spanish speaking Latinas breast cancer survivors and community advocates i nvolved in the care of this population were interviewed in order to develop their interven tion. The barriers and benefits of a peer support counselor intervention for this population were identified. Results of this study suggested that interventions shou ld begin close to diagnosis, build self care skills, stand culturally competent, emotionally supportive, and provide language appropriate cancer information. The Latinas interviewed agreed that support must be ongoing and should be prov ided in person or by telephone. Additionally, the findings suggest that interventions developed for this population should encourage self expression and address the lack of access to healthcare services. Cultural competence was an important component stressed by the researche rs when developing an intervention for Latinas with breast cancer The work of Napoles, Santoyo Olsson, Ortiz, Gregorich, Lee, Duron, Graves, Luce, McGuire, Diaz Mendez, and Stewart (2014) lead to the development of Nuevo Amanecer, a peer delivered stress management intervention for Spanish speaki ng Latinas with breast cancer. Nuevo Amanecer is an 8 week peer delivered intervention intended to improve health related quality of life of this

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15 population The researchers are in the process of conducting a 6 mon th randomized control trial to assess the effects of Nuevo Amanecer. Badger, Segrin, Hepworth, Pasvogel, Weihs, and Lopez (2013) tested two telephone delivered interventions for their ability to improve quality of life for Latinas with breast cancer and t heir supportive partners. Latina participants and their partners were randomly assigned to one of two telephone delivered interventions (telephone interpersonal counseling (TIP C) or telephone health education (THE ). was to test the effica cy of the two telephone delivered psychosocial interventions designed to decrease psychological distress and improve other quality of life extents during their cancer treatment. The study found that both Latina participants and their partners had significa nt improvements in quality of life; however, there was no significant difference between the interventions. The participants in this study indicated that they were pleased with the intervention being in Spanish, allowed for the inclusion of their partners, and was delivered through telephone The authors suggested that this form of intervention is brief, culturally appropriate, and a feasible form of providing emotional and informational support for Latinas and their partners. Sheppard, Figueiredo, Canar, Goodman, Caicedo, Kaufman, Norling, and Mandelblatt (2008) developed a breast cancer decision support intervention for Latinas. This stu dy was composed of two phases. During phase one qualitative data were collected from survivor advocates and Latinas a ctively in treatment to identify factors in p hase two, Latina participants completed a face to face skill building session with a t rained breast cancer survivor. The qualitative phase of this study found that most wom en desired assistance when communicating wit h their

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16 health care providers. Specifically, when asking questions and expressing their concerns about treatment side effects. In addition, the researchers found that cancer fatalism, misconceptions, and negative expectations surrounding chemotherapy negatively i nfluenced treatment decisions. The intervention was modeled over the PACE communication model designed to improve communication between physician and patients (Cegala, Marinelli, & Post, 2000; Cegala, McCl ure, Marinelli, & Post, 2000; Cegala, Post, & McClure, 2001) Sheppard et al. study adapted from this model in that it used Latina patient navigator s to provide the intervention. The majority of women in the study reported high satisfaction with the interv ention. Few interventions specifically targeted at Latinas with breast cancer have been developed; however, there is existing literature on interventions for other types of cancers within this population. Ashing tervention was targeted at Lati nas with cervical cancer. The researcher stated that the delivery of behavioral interventions via telephone are therapeutically effective, are more cost effective and practical than the traditional face to face modality and t hat telephone counseling may be a more efficient approach to reach underserved survivors, who have relatively limited time and resources. The aim of this study was to assess the feasibility of implementing a culturally sensitive telephone intervention to c ervical cancer survivors (CCS) by enhancing their coping strategies and increasing their knowledge about cervical cancer. Latinas were randomly assigned to a co ntrol and intervention groups. The control group participants received a questionnaire and were provided with a survivorship kit and additional reading materials that included information about cervical cancer, sexuality, stress management, nutrition, and communication with doctors, family communication,

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17 clinical trials, as well as available psychol ogical and medical resources The intervention group participants completed six forty minute telephone counseling sessions that used a problem focused cognitive behavioral framework. The counseling incorporates active listening, active support, and active verbal reinforcement for adaptive coping practices. Outcomes were measured by the FACT G Quality of Life scale. Results indicated a significant increase in physical well being and overall quality of life of the intervention group. Women in this group repor intervention on: overall outlook on life (94%), feeling hopeful (100%), energy level (72%), family life (94%), intimacy/marital relationship (56%), spirituality (72%), social activities (83%), quality o f doctor patient relationship (65%), and quality of care (61%). When rating the extent to which the counseling sessions helped increase specific skills related to attitudes and knowledge on a scale of 0 to 4 they reported a rating of 3 for: increased awar eness of psychological resources, increased awareness of nutrition, increased awareness of medical resources, increased ability to communicate with family better, increased stress reduction skills, and increased utilization of healthcare resources. There are several one on one interventions aimed at Latinas to improve their breast cancer screening practices, but just a few for women recently diagnosed with and treated for breast cancer. It is crucial that studies continue to design interventions targeted at Latinas with breast cancer. Studies that gather information directly from participants can better inform and direct the design of interventions. Summary The current body of literature on psychological interventions targeted at Spanish speaking Latina s with breast cancer is scarce. The few interventions reported in the

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18 literature do not address the needs of Spanish speaking Latinas with breast cancer. Existent studies are limited by small samples sizes, high non response rates, and/or focus exclusivel y on Latinos from a specific geographic area and therefore affect the generalizability to other national regions Because there is a dearth of interventions that do not focus on Spanish speaking Latinas there is a need to gather information to design inter ventions that are successful in addressing their psychosocial/psychoeducational needs. In this study key informants and Spanish speaking Latina breast cancer survivors were interviewed The goals of the interviews were to help inform a behavioral interv ention to address the needs of Spanish speaking Latinas with breast cancer receiving care at a safety net hospital The current proposal is an initial step using these methods. The information derived from this study will help create an intervention that m eets the needs of Spanish speaking Latinas breast cancer patients. It is crucial to gather key informant and Spanish speaking Latina breast cancer concerns that are most im portant and relevant to those involved in any psychosocial intervention. To gain a deeper understanding of the psychoeducational and psychosocial needs of Spanish speaking Latinas with breast cancer at the safety net hospital, this study will include the r esponses of key informants and Latina breast cancer survivors. Research Questions 1. What psychoeducation/psychosocial resources currently exist for this population, and what gaps remain? 2. What are the most salient psychosocial needs of Latina breast canc er patients?

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19 3. What do key informants and patients view as the most important components to include in a psychoeducational/psychosocial intervention for Latinas with breast cancer? 4. What do key informants and patients perceive as the most feasible mode of int ervention? 5. What cultural factors should be included in the psychoeducational and psychosocial intervention for this population?

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20 CHAPTER II METHOD Participants Latina Breast Cancer Survivors Patient participants were recruited by a patient navigator employ ed by the safety net hospital. Seven Latina patients diagnosed with breast cancer and having undergone treatment at a safety net hospital in Denver, C O, participated in this study. Ages of the participants ranged from 38 69 year s old (M = 48.43, SD = 12.58). The majority of the patients were either married (71.4%), separated ( 14.3%), or widowed (14.3%). Most of the participants were currently unemployed (85.7%) and monthly household income for (71 .4%) was $1,001 $2,000. The majority of pa rticipants (71.4%) preferred to speak Sp anish and were born in Mexico. Participants cancer stages ranged from Stage I III: Stage I: 42.9%, Stage II: 28.5%, Sta ge III: 14.3%, Unknown: 14.3%. Treatments reported included surgery (85.7%), Chemotherapy (71.4%) Radiation (42.6%), and Biological treatment (42.6%). Key Informants Seven key informants involved in the treatment care of Spanish speaking Latinas with breast cancer were key informants who participated in semi structured interviews. The healthcare pro viders included two patient navigators, a surgeon, an oncologist, and a psychologist. Six of the seven participants were female. Three of the participants identified as Hisp anic and four as non Hispanic. The time in years providers worked at this safety ne t hospital ranged from <1 to 6 years (M=2.38, SD=2.40). The two patient

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21 navigator years at the safety net hospital were from 5 and 6 years (M=5.50, SD=.71). One of the two patient navigators reported speaking and rea ding Spanish better than English. Proce dures The safety net hospital from where the participants were recruited serves over 150,000 residents who reside in severa l medically underserved areas. Upon receiving consent from the participants and key informants, interviews were completed using semi struc tured interviews. These qualitative interviews provided the opportunity to gather in depth information from the Latina BC survivors who are affected by disparate BC care and providers who are familiar with the need of BC patients. Each interview range d from 30 minutes to one hour in length and was audio taped for later transcription, translatio n (if required), and analysis. The semi structured interviews with key informants and Latina BC survivors (see Appendix A and B respectively) inquired about psyc hosocial and psychoeducational factors that impact the care of Spanish speaking Latina BC patients. All participants were asked to complete a socio demographic questionnaire a t the time of their interviews. Key informant questionnaires (See Appendix C) a sked for information about gender, ethnicity, and years working at the safety net hospital. education level, country of origin, time in the U.S., marital status, employ ment, insurance status, income, education level, and acculturation.

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22 Analysis relevant themes from the key informants and Latina breast cancer survivors. Ethnographic conten t analysis was used to document and understand the communication of meaning and verify theoretical relationship (Altheide, 1987). This method of analysis is preferred to quantitative content analysis because it provides opportunities for discovery and veri fication, is always a reflexive research design, and emphasizes validity. In addition it permits the researcher to deal with numbered and narrative data. Ethnographic content analysis also allows for the emergence of themes throughout the data analysis b ecause of its reflexive and circular progression from data collection analysis, and interpretation. (2004) qualitative methodology for ethnographic content analysis helped extract attitudes, beliefs emotions, and values from our interviews. analysis include unitizing sampling, coding, reduc ing, inferring, and narrating. The first step of analysis is unitizing this step requires the researcher to categorize meaningful segmen ts of text into common themes. The researcher developed a coding scheme in order to facilitate the examination of the text for specific data. The research questions are meant to guide the coding scheme so as to ensure that the themes extracted are rel evant to the topic of interest. Following the extraction of themes, these themes were reduced to broader categories in order to ma ke the data more controllable. This is followed by inferring what the data m eans within the framew ork of the research questions. The final

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23 step in the analysis was narration; which included a compilation of the conclusions in an understandable format.

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24 CHAPTER III RESULTS The responses of key informants and Spanish speaking Lat ina breast cancer survivors are included together to better synthesize and make t he results more comprehensible. Key informants and Spanish speaking Latina breast cancer survivors provided information and recommendations for a behavioral intervention. Rese arch Question 1 What psychoeducation /psychosocial resources currently exist for this population, and what gaps remain? Key informants and Spanish speaking Latina breast cancer survivors provided information on avai lable breast cancer resources. The consens us was that there were written materials such as books and pamphlets available in the cancer resource center. Other resources available included interp reters and patient navigators. Although the consensus was that there are available materials there seems to be confusion as to the amount. For example, those who worked in the cancer resource center mentioned having a lo t of books and pamphlets. On the other hand a key informant not involved with the cancer resource center stated when asked if there were wri Not a handful, but you know, because of the way things are in terms of access to It is also worth mentioning that the books available in Spanish consisted o f nationally published books eracy level. Another issue related to the psychoeducational gap is that there are limited

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25 resou rces for educational materials. Obtaining writt en material in the appropriate language and literacy level is quite challenging as one key informant presented, Getting the materials can be challenging. looking for a funding source to help us order everything from the National Cancer Institute. You can order so many and then beyond that amount you have to pay. What is interesting is that although great efforts are being made to provide this population with information on breast cancer, having resources in the approp riate language is not enough as another key informant stated, nal levels or literacy levels. I had an experience with a woman who was diagnosed with breast cancer who read in a booklet provided by NC I saying not to have chocolate. Well her son made her a chocolate cake for her birthday and she refused to eat it. Spanish speaking Latina breast cancer survivors described their interactions with available resources in the form of doctors and patient navigators providing information. When asked specifically if they were given written materials most described having been given books and pamphlets. A patient shed light into the problem with written materials, They g ave me a lot of b ooks to read. I think that in my case it was something easy, because to know how to read, know how to write, kn easier. To be able t o have access to those things. But what I would like, for example, many times ok, you have cancer and there, here is this, read it. But for happened?

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26 ficult because they It is understandable that these patients would describe as the most helpful resources as those coming from people such as doctors, patient navigators, support groups, survivors, and especially financial s upport. Key informants and patients agreed on the usefulness of having interpreters and patient navi gators as a resource. The role of the interpreter as a resource was to facilitate communication b etween providers and patients. This at times was difficul t because of the unavailability of the interpreters or difficul ty with telephone interpreters. The patient navigator role was described as providing emotional support, resources, educational materials, referrals, and to an ex tent address patient barriers. A Spanish speaking Latina breast cancer survivor described her experience having a patient navigator, Thank god like Herminia I have thanked her so much because she has helped me t have what to thank her with. Because she would say a psy chologist is goi ng to come and I can take you. She could take me everywhere, but I would feel capable but she did offe r all the help she could give. Like her I think people should be. It is evident how important the support of others is for Spanish speakin g Latina breast cancer patients. Psychosocial information about resources was obtained through the interview with key informants. Although we did not specifically ask the BC survivors a few mentioned their pa tient navigator as a resource. Key informants sp ecifically mentioned having a psychologist and support groups in their safety net hospital. The problem was that the psychologist and support gro ups were English speaking only. Other

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27 problems that arose with psychosocial support were your typical treatment barriers such as transportation. Many patients are unable to attend support groups or they would cease to continue even in the English group for unexplained reasons The patient navigator provided more information on the gaps within psychosocial resources Oh but we have somebody over here but she speak English only so they need an interpreter sometimes they d And a make appointments over here? The problem with having to refer these patients out is the waitlist. In addition, relying on an interpreter for these services may also be a bar rier to psychosocial services. These patients seem to have to rely on their patient navigator and families for support due to insurance and legal status. Research Question 2 What are the most salient psychosocial needs of Latina breast cancer patients? Key informants and BC survivors identified various psychological concerns pr esent during the breast cancer experience. Several key informants described that patients undergo an overwhelming experience including, fear, anxiety, depressions, body image is sues, and relationship issues. BC survivors also mentioned the above experience s and added family worry, financial concerns, irritability, and preoccupation with cancer. Key informants are aware that these patients are scared, I think in my particular experience, we need to be very understanding. And we need to be, um, un derstand t heir feelings first.

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28 ways. Another key informant provided more information on the interaction between psychological concerns such as fear and the culture, You know what uh unfortunately Hispanic people especially from Mexico they about the treatment or cancer. Because the Spanish people my pati ents that she has a lot anxiety and when she feels something even though if she feels something is happen a little pinch in arm or whatever she thinks she The anxiety that some of these patients experience is not only tied to the diagnosis and treatment but also due to their legal status and/or their previous experience in the medical system from their country of origin, for example, they relevant in Mexico, you hav e a very much tiered services. And I think that they look at themselves as vulnerable to being placed on a tier, which they would be at As far as body image issues one key informant described the experience as, I mean certainly the younger population are going to be more conc erned about body image issues. marita l status but not always. I always find that the women are more concerned about the body

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29 Key informants c ommunicated the importance of how being diagnosed with breast cancer can become an overwhelming experience for these women in that not only do they have to deal with the diagnosis and treatment but also the psychological issues that may arise from them as well. Spanish speaking Latina breast cancer survivors provided us with the psychological concerns they faced regarding the previously identified issues. Certain patients described the overwhelming and impacting news of An interesting finding was how reading materials caused sadness and depression. For example, In the beginning no b ecause they would make me s ad. am barely, by pieces right, like by looking how to behave to prevent what you do essed well so as to not be sad. I would get This patient was unable to read booklets because they would remind her of her diagnosis and she would become overwhelmed. Another identified psycholog ical concern was family worry. These women were the first thing that came to mind. Ok if something happens to me they are going to nced concerns with body image. All of the Spanish speaking Latina breast cancer survivors discusse d

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30 their bod y image experience. Specifically, hair loss was the topic most discussed. When asked if there was any other aspects of their diagnosis or treatment that were difficult for them one patient replied, Yes, the the hair. Eh when it, because I had it very long and it started falling off. And one sees the pillow full of of hair. You see the the shower when you are falling with that you are very sick and are even close to dying really But I I I, did o that the new could come out. And that is how I picture my body a tree and saying the leaves have to already had th (laughs) the machine and cut it. ent shed light on se veral issues. One, hair loss impacts a woman deeply to the point where she worries that people will believe she is severely ill or dying. Two, there are misconceptions in this culture around hair loss. Finally, patients often cope by c utting off their hair and adopting new ways of thinking. Unfortunately, not all patients have a positive outlook or a tree metaphor. Other patients described their experience as something they are still struggling with to this day. Research Question 3 Wh at do key informants and patients view as the most important components to include in a psychoeducational intervention for Latinas with breast cancer?

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31 Key informants identified several intervention components that would benefit Latinas with breast cancer which included rapport building, discussing the initial shock of a diagnosis, psychological support to address depression and anxiety, body image, coping skills, treatment optio ns, and managing side effects. Key informants also addressed what the goals of the intervention should be and included : increasing adherence, improving quality of life, and inc reasing psychological support. When asked how providing patients these patie nts need this kind of support, psychology support, and it will c hange their life. Definitely. Definitely t Another key informant provided a more specific answer which included several of the themes previously stated, I thin facing someone whose f acing their own, sort of death. I mean, they are the patient is here, you feel free to go in. l nicely interrupt one another. mentioned. talk in front of the patient. None something? Make them interact. This key informant was addressing the benefits of having providers collaborate and how this may enhanc e rapport building. Several providers identified anxiety, depression, and body image as components that should be addressed in an intervention. The following key informant expressed his thoughts,

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32 The ability to cope, the ability to have some retention of self value, and I really worry about self loathing is the big issue, which people will not acknowledge. process of getting people through this and at the other end without being so da tellectualize those processes. You handle them emotionally. start at a v ery basic level. Key informants recognized the importance of having a discussion with patients around emotions and addressing psychological concerns such as f ea r of treatment. The now how treatment is gonna be. How is gonna be the si de effects so they have fears. Sometimes they call me in the middle of the night and they tell they have a thermometer put the thermometer how is your fever if your fever is 100.4 you nee d to go over to emergency room. But if not that point you still calm and relax they need a lot of help during treatment. And I think even when they This key informant also identified body image and hair loss, as topics that should be ey loss the hair They Key informants are aware of the emotional difficulties tha t arise from body image issues. It

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33 appears that the majority of key in formants agree that fear is a common emotion experienced by Latinas with breast cancer and this may be exacerbated when there is a misconception of treatment side effects. The emotional journey that Latinas with breast cancer face is one that was describ ed The key informants agreed that their treatment experience is difficult and therefore addressing emotions is beneficial because of the difficulties the patients experience. and the time they are seeing themselves they are getting better in some w ays, probably they feel better. But still they are s truggling with their emotions. Like sometimes they can be alright, and at the next appointm ent, in two months patient to go out from my house and ever ything, but now I feel better. And then, her sister told me a bout yesterday, she melt down. What happened? I started to cry because it remind me again when they were doing my blood work, remind me of everything. You know, i Right now with her, that happened 1 year ago, so it b rings her memories back, you know. Like everything Patients have unaddressed emotions throughout their treatment experience and it appears as though these may be long lasting for some patients. Overall, key informants agreed that psy chological sup port would benefit the patient. Key informants suggested that an intervention could include emotional support,

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34 alleviating fears, address body image issues, and improving quality of life. Because Latina breast cancer patients have a major car egiver role, addressing their concerns about burdening their family with emotions and fears they experience during their breast cancer treatment could be components of an intervention they discuss and work through with their therapist. Latina breast canc er survivors were also asked to provide their recommendations. In addition to providing their content recommendations they were asked what type of method of information they would prefer. For example survivors were asked if they preferred to learn about a vignette through a story they could read or a video/ audiotape they could listen to. Suggestions on th e method varied evenly across. Some preferred to take a story home and read it so they could discuss with their therapist in the next session whereas othe rs preferred an audiotape. Latina BC survivors discussed content recommendations for an intervention that address psychological concerns such as body image, social s upport, and emotional support. Participants shared that patient coping, resources, and sp irituality are also important components to include in an int ervention for this population. When asked if there was anything that would be especially important to consider or include in a program designed to educate and support Latinas going through breast cancer treatment, a Latina breast cancer survivor responded that the loss of hair was difficult for her, Oh god I did not want to end up bald! But it was not going to fall off me because I only felt it three B ut then my daughter told

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35 depressed me a little bit. Latinas echoed the significance of addressing body image concern s previously noted by the key informants. The common experience among survivors provided information on the need for social and emotional support. A Latina BC survivor stated, Give more support in a way that um, there are a lot of people that are here and lea ve all of the family in Mexico. Very few friends of so And we feel al that yes, support. One needs support in ma ny ways. Support, um to know that someone is there pre Another survivor similarly expressed the importance of social support, like to um for example I think that before the appointment you have or after or another day individually be with someone and be able to talk with that person and d listen apart from the fa mily. I think that that to be able to let it all out with someone is important. Having the ability to discuss your emotions can help with other psycholog ical concerns like depression. This may provide relief to the patient in that they are not burdening fa mily members with their distress and instead having an outlet through more appropriate means, such as a therapist.

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36 There are days tha Anything makes you cry. In other words until you can uplift that sadness and even at night I would feel and cry and Latina breast cancer survivors also identified that having discussions of a vailable resources would help. This is not uncommon due to the lack of resources available to this population. When such resources are available, at least in the form of printed material there appears to be agreement that the format of these sources are not literacy level appropriate. Survivors suggested t hat their therapist should also discuss possible available resources because they have a difficult ti me knowing where to find them. In addition, spirituality was conveyed as an important compon ent. Survivors described how their faith was able to get them t hrough their treatment experience. Research Question 4 What do key informants and patients perceive as the most feasible mode of intervention? Key informants and Latina BC survivors identified recommendations around intervention timing, scheduling, and the moda lity of intervention delivery. Key informants were asked if psychological support would be easily accepted by Latinas diagnosed with breast cancer. The consensus is that an interventi on would indeed help patients. to discuss t In addition, several key informants commented that an intervention may have benefits such as increasing adherence, improving quality of live, increasing psy chological a nd social support. The following provider reflected on the benefits of intervening with Latinas diagnosed with breast cancer.

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37 I would think that it uh it would help them be more complian t. Be able, you know, if certain things of their surrounding of the c ancer experience is taken care of then of life. bably the hardest thing to do. Uh, will increase. The othe r thing is just the satisfaction for the provider of not being like frustrated all the time and dealing with all these to be dealing with the patient that is falling apart in t he clinic cause somebody else is taking care of that, so great, you know we can move on and take care of the Feasibility is another issue that must be considered when designing an intervention. Key informants w ere asked whether offering psychological support to Spanish speaking patients would be feasib le at the safety net hospital. The results were mixed due to logistical concerns among t he respondents. Other than a few logistical issues mentioned such as transp ortation, lack of space, timing between appointments, and patient fatigue, all of the key informants expressed that an intervention could be feasible. The feasibility of an intervention revolves a round the intervention timing. Intervention timing refers t o when a therapis t would first see the patient. Intervention timing was advised to start anywhere from the first visit to a fter the surgery consultation. The following key informants express dif fering opinions on the matter. same day yo if its chronic vi The key informant is stating that having a therapist come in on the day of diagnosis would be a feasible starting point. The

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38 fol lowing key informant expressed concerns around having the initial visit on the My concern of the same day would be how really, how much are they really able to absorb and deal with things when there are so many thi ngs going on at the same time. At least that first initial vis it might be a little trickier. Maybe on follow up visits that are a little bit more routine, you know, how are you doing with the chemo, getting the refills, stuff like that. That probably would be a The agreement overall appears to follow the behavioral intervention around the initial diagnosis visit and having the intervention continue throughout treatment. Depending on the role of the key informant at the safety net hospital, infor mation such as having the intervention around their breast clinic day seemed like the most appropriate and feasib le time for everyone involved. The reasoning behind this is due to the barriers some of the patients face such as lacking transportation on day s outside of breast clinic. Breast cancer patients wait long hours for their appointment during the breast clin ic day and could be seen then. Several options were given such as scheduling patients before or after their breast clinic appointment, during th e breast clinic appointment, during infusion, and also leaving it u Each option was noted to have its benefits and barriers but nonetheless there were several options. Key informants and Latina BC survivors were asked about th eir opinion with respect to the moda lity of intervention delivery. Specifically which modality would be most feasible to provide; groups, one on one, telephone, or com bination. There was consensus from key informants aroun d one on one mode of delivery. Lat ina BC

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39 survivors, however, were flexible on the mode of delivery with some preferring face to face, endorsing the mode of phone delivery, and others liking the idea of having had a group while they were going through treatment. I think that helping them have a counselor to that person and I think to even put someone that has already lived it like they say a group that offers a group for them to get together, the women we can get together, I say they I already f eel like I Um but a grou p where we can get together and feel at home who I could have talked to and she would have been through the same, I think that his is what you will feel during if I had had a companion that had already gone through already lived it, then that would have been easier. This patient stated she would have benefited f rom being involved in a group. She also mentioned the benefits of having a peer that has been through breast cancer treatment that can walk her through her journey. Another patient we interviewed had been involved in a group. She informed on the b enefits and barriers of groups. For example she discussed how at times people could not make groups and suggested the benefits to a phone delivery intervention The reunion, but I also think that by phone would be a goo d idea because if someone has a doubt at any moment they can use the p Patients that preferred over the phone stated that having phone interventions would be the easiest for them.

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40 Of the patients that preferred one on one ses sions, the benefits listed behind this mode included getting to know the person, more personable method, and avoiding feeling down by others affect, Well yeah, I think individually woul d be better than by telephone. Because there are times when they are talking on the telephone and you are talking to the person because if it would have been a group maybe I would have had to talk to women that were sad der I would have gotten worse. I f it would have been with women with a lot of courage, positive maybe it would have helped me. Overall, the agreement among Latina BC survivors is that they would have benefitted from any form of intervention delivery. The most feasible appears to be by phone, the desired may be groups due to learning about the experiences of others going through the same, and the drawbacks that occur in groups may be avoided by having one on one sessions. Research Question 5 What cultural factors should be included in the psychoeducational and psychosocial intervention for this population? Key informants were asked what social or cultural barriers they perceive as interfering with patients followi ng treatment recommendations. Key informants perceive that cultural health beliefs (e.g. fatalism and female modesty), low patient self advocacy, patients coping, competing responsibilities, and complimentary treatments play a role in

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41 Cultural health beliefs such as fatalism or myths in the co mmunity may influence For example, a key informant stated that they are still learning about the myths in the communit y. l somehow manifest and sprea d. So some people are resis Fatalism is another cultural beliefs that influence We identified in purpose of our study, self advocacy refers to when a patient engages in supporting themselves (e.g. researching treatment options, communicating with their providers, engaging in their self care ). Key informants recall that Spanish speaking Latina patients tend to ask limited number of questions, appear less engaged, and are often quiet This may be frustrating for providers at times because they have a difficult time identifying whether the pati ent understood what was discussed. Social factors weigh in just as much if n ot more than cultural factors. Treatment barriers may include competing respons ibilities for this population. Competing responsibilities may include but are not limited to: childcare, finances, transportation, relationships, work, house care, immigration status, insurance states, language, and educational level. heir socio economic background. You know, I think, in general, the Latino, the immigrant popu lation here in the U.S. is not the people who are doing well in the city.

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42 Another key informant described the diffic They are usually the caregiver and manage the home. Treatment may be interrupted not issues such as transportation. Key informants described how their pat ients would have to take several buses to ge t to the clinic for treatment. It is not a surprise that most patients also cope by bringing their sou rce of social support (family). Being aware and understanding the social and cultural factors that may provide additional challenges for Spanish speaking Latinas diagnosed with breast cancer may influence their treatment adherence. Interviewed Latina breast cancer survivors were asked if they had ever discussed any cultural factors that were important with their providers There were two patients who did not discuss cultural factors with their providers. Overall, Latina breast cancer survivors agreed that the inclusion of family, spirituality, and complimentary treatments are very important cultural factors to co nsider when designing a psychoeducational and psychosocial int ervention for this population. Family was demonstrated as the most common factor highlig hted throughout the interviews. Including the family is important for these women as they provide social a nd emotional support. They can also serve as interpreters when there is a language barrier between provider and patient or when a n interpreter is unavailable. One patient stated that to her it was important to discuss religion with her provider, Yes, we di one goes to church an d asks God and the family too. To me that was the most important, family. Their support and I did talk to the doctor about this.

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43 The interviews reveal that compl imentary treatments are also popular among Spanish speaking Latina women. The women interviewed discussed herbs, teas, Reiki, and supplements in addition to the western medical treatments they were receiving for their diagn osed breast cancer treatments. Ho wever, one participant mentioned that although complimentary treatments exist in the culture they do not necessarily discuss this with their providers. Um, d So I would ask if I me was what is natural remedies. I used what is aloe a lot. I always had to let her know what I was going to drink. Spanish speaking Latinas diagnosed with breast cancer we re also asked if there is anything that would be especially important to consider or include in a program designed to educate and support Latinas going th rough breast cancer treatment. Providing emotional support, addressing financial concerns, providing p atient navigators, and content resources were important factors to include in a psychoeducational and psychosocial prog ram. The role of patient navigators facilitates the trea tment experience of the women. Several of the women interviewed commented on thei r gratitud e for their patient navigator. The women expressed that she had helped them through several logistical issues such as transportation, finding resources, financial issues, and at times was a source of emotional support. Two of the women interviewe d discussed the need for literacy level appropriate content resources such as brochures and better reading a book what they do is put it asi de and forget about the boo The most common advice

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4 4 given by the participants was to consider addressing emotional and financial concerns when designing an intervention for this population. Give more support in a way that, um, there are a lot of people that are here and leav e al l of the family in Mexico. ave friends. Ad we feel alone. Always My husband would miss work a lot to be with me and because he missed so much he would earn less and the costs were more difficult.

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45 CHAPTER IV DISCUSSION The purpose of the this study was to gain a better understanding of the experiences of Spanish speaking Latin qualitative semi structured interviews with Latina BC survivors and key informants directly involved wit h the care of this population. In addition, a goal of the study was to gather information specifically on the p sychosocial and psychoeducational gaps for this population to inform the creation of a feasible intervention to improve treatme nt outcomes for these patients. Key informants and Latina BC survivors described their experiences with respect to BC treatment, including the availability of resources, educational needs, psychological struggles, and the social and cultural factors involved with their treatment experience. Key informants and Latina BC survivors described several gaps within the health system, suc h as lack of adequate resources, communication difficulties, and treatment barriers (e.g., transportation, finances, and child rearing) that influence treatment outcomes for this population. In addition, not having any or insufficient psychosocial support was also an identified as a gap for Spanish speaking Latinas diagnosed with breast cancer in this safety net hospital. Recommendations for an Intervention for Spanish speaking Latinos diagnosed with Breast Cancer Overall, key informants and Latina BC su rvivors described their treatment experience as multifaceted and complex due to several contributing factors. They provided information about several problems with respect to the psychosocial and

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46 psychoeducational gaps affect ing their treatment experience. For example, they discussed issues including logistical difficulties (e.g., transportation, childcare), communication barriers (e.g., literacy appropriate materials, patient provider communication, interpreters), reaction to diagnosis, treatment side effe cts, psychological distress (e.g., fear, anxiety, depression), and patient coping (e.g., emotional support and family support) Key informants and Latina BC survivors suggested that an intervention should specifically help patients overcome the identified barriers such as the ones previously mentioned. Language barriers and low cancer literacy and education level was noted by key informants and BC survivor participants as an important component to address due to the amount of psychoeducation material availa ble that is not adequate for this population. Not all of the key informants were aware of the cancer resource center or available resources for this population. Those who were familiar agreed that the information is not literacy appropriate for this popul ation. Another commonly identified aspect of the treatment experience that should be acknowledged in an intervention is facilitating communication b etween patients and providers. Helping Latina BC survivors become empowered to ask questions is important in order to inform their t reatment options and decisions. Key informants noted that Latina patients tend to be very quiet and do not ask very many questions which leaves them confused as to how much information the patient actually grasped. It may be that th e journey, especially in the beginning, is extremely overwhelming and patients are unaware of what information to ask about/for Although not previously noted, there may also be socio cultural fac tors coming into play as well. For example, doctors may be v iewed in a paternalistic manor and therefore patients may follow any directions from their providers.

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47 Key informants and Latina BC survivors are familiar with the functioning of the safety net hospital with respect to t he treatment of breast cancer. Given this, they also provided additional recommendations for what an intervention program should consider and integrate in t he current health care system. For example, key informants and Latina BC survivors identified systemic recommendations such as content, d elivery, timing, and scheduling of a behavioral intervention to better facilitate the implementati on of a feasible intervention. They specifically noted that content of an intervention should include psychological support, psychoeducation, patient adherenc e, patient coping, spirituality, body im age, vignettes, and resources. They also recommended that the program should be flexible given the barriers to treatment this population endures. Delivery of an intervention was recommended in the form of telephone face to face, and/or groups. The intervention was thought to appropriately begin at diagnosis and to consist of ongoing support throughout treatment Scheduling should consider according to the functioning of the breast clinic and other available times, a gain focusing on having a flexible approach for this population. Key informants and patients have unique insight into what is likely to make an intervention feasible or not, therefore it is important to consider their specific recommendations when designin g an intervention aimed at Spanish speaking Latinas diagnosed with breast cancer. Extant culturally tailored interventions for Latinas diagnosed with breast cancer (e.g., Napoles Springer et al., 2008; Napoles et al., 2014; Badger et al., 2013; Sheppard et al., 2008) stress the importance of culturally tailored interventions addressing the psychosocial and psychoeducational needs of Spanish speaki ng Latinas with breast cancer. Consistent with prior research, the recommendations from the key informant and

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48 Sp anish speaking Latina breast cancer survivors in our study reflect the need for interventions that begin close to diagnosis, inclusion of providers that are culturally competent, and language a ppropriate cancer information. Spanish speaking Latinas and key informants described a variety of barriers in their treatment such as transportation difficulties, financial and insurance problems, and childcare needs. Moreover, it was also suggested that the psychosocial needs of this population are consistent with pr evious qualitative research studies. Psychosocial support could be provided to this population through several means. Groups, telephone, and one on one intervention were all endorsed. Key informants and patient participants agreed that the intervent ionist could provide psychosocial support that this population currently does not have much access to. Patients agreed that any form of psychological therapy would be beneficial. However, there was a patient who had experience with group therapy and expres sed he r concerns with group therapy. Among the concerns listed were patient adherence to groups, additional barriers that impede group attendance, and at times the emotional distress that may come from joining such groups. On the plus side, other patients stated that it would be helpful to have a peer guide them thro ugh the treatment journey. Key informants and survivors discussed the unavailability of psychosocial interventions and resources appropriate for this population. This information is not surpris ing given what we know from the literature on underserved pop ulations. In addition, key informants and survivors also provided insight into how an intervention therapist may also provide psychoeducation to patients. Key informants and survivor participants noted that intervention therapists could also provide psychoeducation that is at the appropriate literacy level and may empower

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49 the patient to ask their providers additional questions. Liu, Malin, Diamant, Thind, and centered communication and perceived self efficacy in patient provider interaction were significantly association with patient adherence with respect to tamoxifen and aromatase inhibitors therapy in low in come women with breast cancer. Therefore, empoweri ng women to communicate with their providers, although challenging due to several previously mentioned barriers, may result in better psychological and treatment outcomes for Spanish speaking Latinas undergoing breast cancer treatment. In addition, addre ssing the unique sociocultural factors that act as psychosocial barriers to treatment such as fear of recurrence, spirituality, anxiety and depression, treatment side effects, and other beliefs and attitudes could provide a stronger intervention specifical ly tailored for this population. The timing of an intervention addressing these concern s is also extremely important. Napoles Springer et al. (2008) stated it is critical for interventions and psychosocial support to begin around the time of diagnoses to r elieve fear and anxiety. Insufficient psychosocial support has shown to increase distress, lower emotional well being, social disruption, and engagement in avoidance behaviors and thoughts (Figueiredo, Fries, & Ingram, 2004). Limitations The design of this study prompted in depth information from key informants and Latina breast cancer survivors involved and/or affected by disparate care. Although the information gathered from this research provided valued information and insight with respect to the psychoe ducation and psychosocial needs experienced by Spanish speaking Latinas diagnosed with breast cancer, there were some limitations to the study that should

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50 be addressed d interpretation of the data. Steps wer e taken to address this issue. For example, the researchers took caution by standardizing the coding procedures and interpretation of the results during the data analy sis to reduce researcher bias. The accuracy of the transcripts was ve rifi ed against the audiotapes. The transcripts were independently coded by two bilingual research team members with previous experience analyzing qualitative data. Next, discrepancies in coding were discussed and resolved by the research team. After the trans cripts were coded each researcher again reviewe d the codes and themes. Finally the research team held meetings to verify the codes and themes that emerged. These codes and themes were also reviewed by the primary investigator. An additional limitation to this study may also be the heterogeneity of the Latina breast cancer survivors in terms of age, level of education, acculturation, and lengt h of time in the United States. For example, it is possible that women who have lived in the United States and are more acculturated differ in their breast cancer treatment experiences from t hose who are less acculturated. Research has identified differences in cultural beliefs, language preference, and immigration status differenc es among acculturation levels. Similar ly there may also be differences in experiences among different ages groups, education levels, and primary language spoken that the current study did not explore. What is worth noting is how all of the participants agreed that any form of intervention woul d be beneficial; telephone, group, or one on one interventions. This consensus may reflect the need for any type of psychosocial support services, although it could be due to the lack of knowledge regarding psyc hosocial intervention formats. Only one of t he participants had actually participated in a psychotherapy group.

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51 However, they all agreed that for them any format would be feasible given the level of unmet psychological and psychoeducational needs they experience. Self advocacy was a t heme identifie d in this study. Key informants discussed their experience with Latinas having lower self advocacy co mpared to other ethnic groups. Because we did not measure acculturation it is unknown whether low self advocacy is attributed to Latinas level of accultura tion, lack of knowledge, or a combinat ion of factors. Studies have found that Latinas with higher acculturation level also tend to have higher education (Sepucha, Feibelmann, Change, Hewitt, & Zoigas, 2014; Maly, Um ezawa, Ratliff, & Leake, 2006). In additi on, the literature suggests that low acculturated Latinas tend to be less knowledgeable than Whites, are less likely to be involved in decision making, are less satisfied with their decisio ns, and experience more regret (Hawley, Griggs, Hamilton, et al., 2 009; Hawley, Fagerlin, Janz, & Katz, 2008; Hawley, Janz, Hamilton, et al., 2008). Sepucha et al. (2014) did not find support for their hypothesis that acculturation scores are associated with decision quality (which was measured through knowledge scores, d ecision process scores, and rates of concordant care). knowledge scores did not vary significan tly by level of acculturation. The contradictory findings may be attributed to the differences in knowledge and acculturation measures used in the studies. Hunt et al. (2004) argued the complexity of acculturation and the difficulties in measurement that provide additional challenges when as sessing acculturation properly. Overall, se veral studies have found that Latinas experience considerable knowledge gaps (Sepucha et al., 2014).

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52 Within group differences among Latinas were not taken into consideration due to the term In these cases level of accultur ation, generation, country of origin, etc. we re not specifically discussed. Therefore, it is unknown whether such differences would impact the recommendations of culturally tailored intervention designed for this population. The patients interviewed were b reast cancer survivors and were asked to reflect back on their breas t cancer treatment experiences. Possible recall bia s may result from such reports. Given that this population consisted of survivors, it is unknown what the treatment experience was of tho se who did not survive. Perhaps they could have provided additional information on the psychoeducation and psycho social needs in their journey. In addition, we were unable to interview patients with more aggressive breast cancer stages such as stage IV or those who had a recurrence. Therefore, future studies would benefit from input from patients representing various stages and recurrences in the breast cancer range. Lastly, our study did not obtain the perspectives of women who did not follow treatment T heir information could have provided valuable insight into the psychoeducation and psychosocial gaps needed to create an intervention that meets the needs of Spanish speaking Latina breast cancer patients. Contributions and Future Directions The results of this qualitative study contribute to the scarce literature on the psychoeducational and psychosocial needs of Spanish speaki ng Latinas with breast cancer. By understanding the treatment journey and experiences of Latina breast cancer survivors and key informants involved in their care, we can achieve a better understanding of what gaps remain in the current psychological treatment care for

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53 patients undergoing BC treatment There is a need for more information on Spanish speaking Latinas diagnosed with b reast cancer in the current literature. Currently, the literature does not address comprehensive interventions that address the need s of this specific population. Specifically, there is a dearth of interventions addressing the needs of Spanish speaking Lat inas during diagno sis and treatment. This is concerning due to the poorer physical and psychosocial outcomes this population experiences c ompared to other ethnic groups. For example, Latinas breast cancer survivors report the lowest health related quality of life compared to all other ethnic grou ps (Ashing Giwa et al., 2007). In addition, high levels of sadness, depression, body image concerns, anxiety, inadequate social support, difficulty with treatment side effects, and poor communication with providers provides evidence that suggests that interventions targeted at Spanish speaking Latinas diagnosed with breast cancer are needed ( e.g., Ashing Giwa & Lim, 2010; Fatone et al., 2007; Hawley et al., 2008; Janz et al., 2009; Moadel et al., 2007; Spencer et al. 1999) The current study focused on assessing the psychoeducational and psychosocial needs of this population of patients diagnosed with breast cancer in order to develop a culturally tailored intervention that targets their needs. Overall, BC survivor participants of this study were very interested in discussing their experiences with their breast cancer treatment experience from diagnosi s through the end of treatment. In addition, this study also gathered information on specific recommendations that ai ded the development of the psychological intervention specifically for this population Information from key informants and Spanish speaking Latina breast cancer survivors provided valuable insight into how an intervention may work in t he current health ca re system. This study could help guide future researchers by

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54 aiding them in the process of creating and implementing culturally tailored intervention for Spanish speaking Latinas undergoing breast cancer treatment In addition, the information gathered fro m this study adds to the understanding of the treatment experience and barriers faced by low income Latinas in general. Future research should build upon this study by investigating and addressing the wide range of factors affecting Spanish speaking Lat The psychosocial difficulties experienced by this population should also be paid particular attention given the lack of information in the literature. Culturally tailored interventions that could address and ameliorat e the insufficient and low quality cancer information for Latinas with breast cancer along with psychosocial difficulties experienced could mean better quality of life and treatment related outcomes for this population. A systematic review by Yanez, Thomps on, and Stanton (2010) found that Latinas were more likely to report poorer quality of life (QOL) in the domains of mental, physical, and social compared t o non Latina Whites and Blacks. Interventions for this specific population are needed and there are v ery few undergoing randomized controlled trials (N apoles et al., 2014). Therefore, researchers must continue to devise, implement, and evaluate interventions in order to improve the quality of life and reducing distress for Spanish speaking Latinas with br east cancer while providing them with literacy level appropriate breast cancer psychoeducation.

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68 re views and meta analyses: nursing and cancer support groups. Journal of Advanced Nursing, 51 (4), 369 381. Zimmermann, T., Heinrichs, N., & Baucom, D. H. (2007). "Does one size fit all?" moderators in psychosocial interventions for breast cancer patients: A meta analysis. Annals of Behavioral Medicine, 34 (3), 225 239.

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69 APPENDIX A Key Informants Interview Questions We are designing a program to help Latina patients with breast cancer at Denver Health to better understand their diagnosis and treatment. Such 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 sti ll remain, and how these needs could be best fulfilled. 1. What resources are currently available for Spanish speaking breast cancer patients to educate them about their diagnosis and treatment? (Ex: Educational resources, Patient navigation) If Yes: Do all providers know about these services? Are patients informed about these services during their visits? 2. 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 proper ly? 3. We would like to know your opinion about whether any of the following modes of providing information about breast cancer diagnosis and treatment be of interest to Spanish speaking patients and why do you think they would be effective means of conveyin g information: a. Would pamphlets or brochures be of interest and how can these be effective? b. Would audiovisuals such as videos be of interest and how can these be effective? c. Would computer CDs/DVDs be of interest and how can these be effective? d. Which of the above do you think would be the most effective and why? e. Are there any other means of providing information that you think would be effective? 4. What resources are currently available for Spanish speaking breast cancer patients to help them cope with psychological struggles such as anxiety and depression related to their diagnosis and treatment? (Ex: social workers, counselors, outside referrals) If Yes: Do all providers know about these services? Are patients informed about these services d uring their visits?

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70 5. In your opinion, what are the most salient gaps or holes in the current psychological or mental health support for Spanish speaking breast cancer patients? 6. What social or cultural barriers do you perceive as interfering with patients following treatment recommendations? (e.g., family dynamics, health beliefs) 7. Do you think that offering psychological support would be easily accepted by this population? Why or why not? Probe if not mentioned: Do you believe that they would be open to s peaking to a third party about their emotional struggles related to their diagnosis and treatment? 8. Do you think that offering psychological support to Spanish speaking patients would be feasible at Denver Health? Why or why not? Probe if not mentioned: D o you believe that health care providers and other staff would be supportive of offering this additional service to patients on top of their treatments? Probe if not mentioned: Do you anticipate that health care providers and other staff would refer patie nts to these additional services? 9. If psychological support was offered to Spanish speaking patients, which of the following modes of delivery do you think would be most feasible to provide? a. Meeting with patients in groups? (Probe: why? for what reasons? ) b. Meeting with patients one on one before or after their office visits? (Probe: why? for what reasons?) c. Meeting with patients one on one at another designated time? (Probe: why? for what reasons?) d. Working with patients by telephone? (Probe: why? for what r easons?) i. What do you see as the potential drawbacks and benefits of each of these intervention formats? ii. Do you think that a combination of methods would be feasible and useful? 10. At what point during treatment should psychological support begin? a. At what poi nt along the cancer care continuum should the intervention end? 11. 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)

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71 12. How would you gauge the success of an intervention providing psychological support to Spanish speaking patients with breast cancer?

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72 APPENDIX B Patient Interview Questions We are designing a program to help new ly diagnosed Latina breast cancer patients at Denver Health better understand their diagnosis and treatment plan and improve their quality of life by providing emotional support and teaching coping skills to help with this difficult experience. We are cre ating 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 what your experience was like while you were going through treatment. We also 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 r esources 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 g ood 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 trea tment decision? b. Did you feel comfortable discussing multiple options with your doctor? 5. We would like to know your opinion about whether any of the following modes of providing information about breast cancer diagnosis and treatment be of interest to pat ients like you and why do you think they would be effective at providing information: a. Would pamphlets or brochures be of interest and how can these be effective?

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73 b. Would audiovisuals such as videos be of interest and how can these be effective? c. Wou ld computer CDs/DVDs be of interest and how can these be effective? d. Which of the above do you think would be the most effective and why? e. Are there any other means of providing information that you think would be effective? 6. Please tell us, which aspe cts 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. Wa s 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? 7. We would like to k now 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 discoura ged? a. How did you deal or cope with these feelings? 8. 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 had an opportunity to sp a. Would you prefer to meet with a counselor individually face to face before or after your appointments or at another designated time? (why?) b. Would you prefer to talk over the phone with a counselor? (why?) c. Would you prefer 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? 9. Did you ever discuss any cultural factors that were important to you with your doctor? (e.g., family inclusion, use of complimentary t reatments, spirituality, etc.) a. Why or why not? b. Is there anything you wish your doctor had known about your culture during your treatment?

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74 10. 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? 11. creating a program like this?

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75 APPENDIX C Key Informa nt 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

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76 APPENDIX D Patient Socio demographic Questionnaire (English and Spanish) AYUDA: A Training Program to Improve Br east Cancer Outcomes among Latina Patients Section I 1. Your age? ______ [Years] 2. In what country were you born? ___________________________ 3. How long have you lived in the United States? ___ All my life ___ years 4. Your current marital stat us? [Circle one] Never married Married Divorced Separated Living Partner Widowed 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 $1,0000 $1,001 $2,000 $2,001 $3,000 $3,001 $4,000 More than $4,001 9. How many people live in your household? _________ 10. What is your zip code? __________ 11. Where did you do most of your schooling? Latin America _____ or USA_____ completed: High School College Post

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77 Grade School 1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 Graduate Section II 1. When were you first diagnosed with breast cancer? ____ month ____ year 2. What was the stage of your diagn osis? __Stage I, __ Stage II, __ Stage III, __ Stage IV 3. Did you have surgery? ___ Yes ___ No __ Pending 4. Did you have chemotherapy? ___ Yes ___ No __ Pending 5. Did you have radiation therapy? ___ Yes ___ No __ Pending 6. Did you have biological therapy? ___ Yes ___ No __ Pending 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 Spanis h 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 Mostly in Equally in Latin America Mostly in the Only in Latin America Latin America and the USA USA USA

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78 4. Is your current circle of friends ---> Almost all Hispanics/ Latinos Mainly Hispanics/ Latinos Equally Hispanics & Non Hispanics from the U.S.A. Mainly Non Hispanics from the U.S.A. Almost all from USA 5. In relation to having an Hispanic/Latino backgrou nd, do you feel ---> Very Proud Proud Somewhat Proud Little Pride No Pride

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79 AYUDA: Un Programa de Entrenamiento para Mejorar los Resultados del Cncer del Seno en Pacientes Latinas Seccin I 1 Cuntos aos tiene? ____________________ 2. Cul es su pas de nacimiento? ___________________________ 3. Cunto tiempo ha vivido en los Estados Unidos? _____ aos _____Toda mi vida 4. Cul es su estado civil actual ? (por favor encierre su respuesta en un crculo). Soltera (nunca casada) Casada Divorciada Separada Co habitante (vive con pareja) Viuda 5. Est usted actualmente trabajando?___S___No Est usted retirada?___S ___No 6. Cul es/fue su ocup acin? _____________________ 7. Tiene usted: Medicare? __s__no Medicaid? __s__no Aseguranza privada? __s__no 8. Encierre en un crculo la cantidad que mejor describa el ingreso total por mes de su familia: Menos de $1,000 $1,001 $2,000 $ 2,001 $3,000 $3,001 $4,000 Ms de $4,001 9. Cuantas personas viven en su hogar? _____ 10. Cual es su codigo (zip code)? ______

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80 11. D nde curs usted la mayor parte de su educacin? Latino Amrica____ o USA _____ 12. Por favor ponga una 'X' en el cuadro que mejor describa el nivel ms alto de educacin completada: Primaria Secundaria Tcnico/Vocacional o Universidad Post grado 1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 5+ Seccin II 1. Cuando fue diagnosticada con cncer del seno? ____ mes ____ ao 2. Cual fue la etapa de su diagnostico? __Etapa I, __ Etapa II, __ Etapa III, __ Etapa IV 3. Le realizaron una ciruga/mastectoma? ___ S ___ No __ Pendiente 4. Le dieron quim ioterapia? ___ S ___ No __ Pendiente 5. Le dieron radioterapia? ___ S ___ No __ Pendiente 6. Le dieron una terapia biolgica? ___ S ___ No __ Pendiente Seccin III 1. Usted habla ----> Slo espaol Espaol mejor que ingls Espa ol e ingls igualmente bien Ingls mejor que espaol Slo ingls

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81 2. Usted lee ---> Slo espaol Espaol mejor que ingls Espaol e ingls igualmente bien Ingls mejor que espaol Slo ingls 3. Pas su edad temprana [niez y adolescencia] e n --> Slo en Latino Amrica La mayor parte en Latino Amrica Igualmente en Latino Amrica y en USA Principalment e en USA Slo en USA. 4. Actualmente su crculo de amigos es ---> Casi todos son Hispanos/ Latinos La mayora son Hispanos/ Latinos I gualmente Hispanos y anglos de USA La mayora son anglos de USA Casi todos anglos de USA 5. Tener origen hispano o latino hace que usted se sienta ---> Muy orgullosa Orgullosa Algo orgullosa Poco orgullosa Nada orgullosa