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Ayuda

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Title:
Ayuda acceptability and feasibility of a psychoeducational and psychosocial support program for Spanish-speaking Latinas with breast cancer
Alternate title:
Acceptability and feasibility of a psychoeducational and psychosocial support program for Spanish-speaking Latinas with breast cancer
Creator:
Drennen, Ava Roxanne ( author )
Place of Publication:
Denver, CO
Publisher:
University of Colorado Denver
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Language:
English
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1 electronic file (172 pages). : ;

Thesis/Dissertation Information

Degree:
Doctorate ( Doctor of Philosophy)
Degree Grantor:
University of Colorado Denver
Degree Divisions:
Department of Psychology, CU Denver
Degree Disciplines:
Clinical health psychology

Subjects

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

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Review:
Latina breast cancer patients experience significantly poorer outcomes compared to non-Latinas. Including lower treatment adherence and survival rates and higher levels of psychosocial distress. Because current programs are not designed to be culturally-relevant and linguistically-appropriate for Spanish-speaking Latinas, in this study a psychoeducational and psychosocial intervention was developed and implemented to assess its feasibility and acceptability for this population of patients undergoing breast cancer treatment. Nine Spanish-speaking Latinas participated in the intervention for five to eight weeks. The intervention covered topics including health education, communication, coping with treatment side effects, cultural beliefs, spirituality, self-care, body image, and coping with distress. Sessions were offered in-person and via telephone. Patients received psychoeducational materials about breast cancer and communication and short vignettes that illustrated key topics to read before their sessions. Upon intervention completion, patients participated in exit interview about their experiences. Qualitative data was analyzed using ethnographic content analysis. Patients completed several assessments before and after participating in the intervention; these focused on topics like quality of life, patient-provider communication, and spirituality. The feasibility of administering these instruments was assessed.
Thesis:
Thesis (Ph.D.)--University of Colorado Denver. Clinical health psychology
Bibliography:
Includes bibliographic references.
System Details:
System requirements: Adobe Reader.
General Note:
Department of Psychology
Statement of Responsibility:
by Ava Roxanne Drennen.

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Source Institution:
|University of Colorado Denver
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Auraria Library
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All applicable rights reserved by the source institution and holding location.
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910882491 ( OCLC )
ocn910882491

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Full Text
AYUDA: ACCEPTABILITY AND FEASIBILITY OF A
PSYCHOEDUCATIONAL AND PSYCHOSOCIAL SUPPORT PROGRAM FOR SPANISH-SPEAKING LATINAS WITH BREAST CANCER
by
AVA ROXANNE DRENNEN
B.S., B.A., Colorado State University, 2009 M.A., University of Colorado Denver, 2012
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 Doctor of Philosophy Clinical Health Psychology
2015


This thesis for the Doctor of Philosophy degree by
Ava Roxanne Drennen has been approved for the Clinical Health Psychology Program by
Kristin Kilboum, Chair Evelinn Borrayo, Advisor Krista Ranby Sonia Okuyama-Sasaki


Ill
Drennen, Ava Roxanne (Ph.D., Clinical Health Psychology)
AYUDA: Acceptability and Feasibility of a Psychoeducational and Psychosocial Support Program for Spanish-Speaking Latinas with Breast Cancer
Thesis directed by Professor Evelinn Borrayo.
ABSTRACT
Latina breast cancer patients experience significantly poorer outcomes compared to non-Latinas, including lower treatment adherence and survival rates and higher levels of psychosocial distress. Because current programs are not designed to be culturally-relevant and linguistically-appropriate for Spanish-speaking Latinas, in this study a psychoeducational and psychosocial intervention was developed and implemented to assess its feasibility and acceptability for this population of patients undergoing breast cancer treatment.
Nine Spanish-speaking Latinas participated in the intervention for five to eight weeks. The intervention covered topics including health education, communication, coping with treatment side effects, cultural beliefs, spirituality, self-care, body image, and coping with distress. Sessions were offered in-person and via telephone. Patients received psychoeducational materials about breast cancer and communication and short vignettes that illustrated key topics to read before their sessions.
Upon intervention completion, patients participated in exit interviews about their experiences. Qualitative data was analyzed using ethnographic content analysis. Patients completed several assessments before and after participating in the intervention; these focused on topics like quality of life, patient-provider communication, and spirituality. The feasibility of administering these instruments was assessed.


Patients were interested in and able to participate in the intervention. They were satisfied with the topics and strongly preferred in-person sessions. Psychoeducational materials were vital to the intervention, helping inspire conversations and promote understanding about breast cancer, treatment, and communication with providers. The vignettes were not feasible and participants appeared open and able to discuss their experiences even without them. Most of the assessments were feasible, although fewer or shorter instruments might be more realistic for this population, and assessing religiosity instead of general spirituality may be more culturally appropriate for this population. Patients were satisfied that the program began soon after diagnosis. Some were satisfied with the program ending near the end of treatment, whereas others desired more sessions. There were no significant differences between pre- and post-intervention measures.
This study provided valuable information about the feasibility and acceptability of the content and delivery of a comprehensive psychosocial and psychoeducational intervention for Latina breast cancer patients and can help guide the design and implementation of future programs for this population.
The form and content of this abstract are approved. I recommend its publication.
Approved: Evelinn Borrayo


V
TABLE OF CONTENTS
CHAPTER
I. INTRODUCTION.....................................................1
Breast Cancer Disparities........................................1
Psychological Interventions for Breast Cancer Patients..........12
Summary.........................................................18
Research Questions..............................................19
II. METHODS.........................................................23
Research Design.................................................23
Participants....................................................25
Procedures......................................................26
Analysis........................................................45
III. RESULTS.........................................................51
Participants....................................................51
Summary of Intervention.........................................53
Research Questions Findings.....................................61
Pre- and Post-Intervention Measures.............................98
IV. DISCUSSION.....................................................108
Recommendations for Future Interventions.......................108
Limitations....................................................123
Contributions and Future Directions............................125
REFERENCES
129


VI
APPENDIX
A. Patient Vignettes (English and Spanish)............................140
B. Intervention Assessment Instruments................................145


1
CHAPTERI INTRODUCTION Breast Cancer Disparities
The most common type of cancer among American women is breast cancer, accounting for over one-quarter of cancer diagnoses. In 2015, approximately 231,840 American women are expected to be diagnosed with this disease (American Cancer Society, ACS, 2015). Although breast cancer mortality rates have been declining over the past two decades, nearly 40,290 women are expected to die from breast cancer in 2015 (ACS, 2015).
The burden of breast cancer is not distributed equally among all American women. Despite the fact that Latinas have a lower incidence rate for breast cancer than women in other ethnic groups, they are more likely to experience poor treatment outcomes (e.g., Colorado Cancer Coalition, CCC, 2011). This is especially concerning, as breast cancer is the most commonly diagnosed cancer and leading cause of cancer death among Latina women (ACS, 2012). Among Latinas, cancer is the number one cause of death overall, whereas cancer is the second leading cause of death for non-Hispanic White women (ACS, 2012). Compared to their non-Hispanic White peers, Latinas have a lower five-year survival rate for breast cancer (ACS, 2013; Colorado Cancer Coalition, CCC, 2011). Nationally, Latinas have an 87% five-year breast cancer survival rate, whereas non-Hispanic White women have an 88.6% five-year survival rate (ACS, 2013). In Colorado, Latinas have an 83% five-year breast cancer survival rate, whereas the rate for non-Hispanic White women is 89% (CCC, 2011). Information regarding disparities in survival rates between Latinas and non-Hispanic White women of all ages diagnosed at


2
each stage of breast cancer was not available. However, in a sample of elderly women (68 years of age or older), there were no statistically significant differences in mortality rates between Latinas and non-Latina White women at any stage of breast cancer at diagnosis (0 through IV), when several factors such as screening utilization, biological measures, tumor characteristics, treatment plan, and income and community variables were taken into account.
Various explanations have been proposed to account for Latinas breast cancer survival disparity compared to non-Hispanic White women. Research indicates that Latinas are less likely to receive regular, recommended mammography screenings and are less likely to be diagnosed with more localized, earlier stage cancers (Curtis, Quale, Haggstrom, & Smith-Bindman, 2008; Howe et al., 2006). However, later diagnosis and advanced cancer stage do not fully account for the breast cancer survival disparity of Latinas (Curtis et al., 2008; Shavers, Harlan, & Stevens, 2003). Latinas tend to experience longer delays during breast cancer treatment, even when cancer stage, insurance status, education level, and other important variables are accounted for (Fedewa et al., 2011). These patients are less likely to receive hormonal therapy than non-Hispanic White women, despite no significant differences in tumor receptor status (Freedman, Virgo, He, Pavluck, Winer, Ward, & Keating, 2011). Furthermore, Latina breast cancer patients are less likely to follow treatment recommendations, and inadequate adherence plays a large role in cancer progression and recurrence (CCC,
2011).
Several factors have been posited to account for delays in treatment, lower likelihood of receiving hormonal therapy, and non-adherence to treatment


3
recommendations. First, Latina patients are more likely than non-Hispanic White women to be affected by socioeconomic factors such as lack of insurance, low educational attainment, and lower incomes, which may contribute to barriers in receiving timely, adequate treatment (Fedewa et al., 2011; Vona-Davis & Rose, 2009). Physician biases, language barriers, and ineffective patient-provider communication may also contribute to these concerns (Fedewa et al., 2011; Freedman et al., 2011). Additional factors such as patient trust in their providers and the healthcare system as a whole, as well as the difficulties of accessing and navigating a complex healthcare system may also affect the treatment that Latina breast cancer patients receive and contribute to disparities in breast cancer outcomes (Fedewa et al., 2011; Freedman et al., 2011).
Psychosocial Needs
In addition to poorer physical outcomes compared to non-Hispanic White women, Latina breast cancer patients also experience significant psychological needs during breast cancer diagnosis and treatment. Research indicates that Latinas with breast cancer generally experience poorer overall quality of life compared to women of other ethnic groups (e.g., Ashing-Giwa & Lim, 2010; Fatone, Moadel, Foley, Fleming, & Jandorf, 2007; Janz et al., 2009; Maly, Stein, Umezawa, Leake, & Anglin, 2008; Sammarco & Konecny, 2010). Older Latinas and those with a low level of acculturation to the dominant U.S. culture in particular are likely to report significantly worse quality of life than non-Hispanic White women or younger Latinas with a higher degree of acculturation (Janz et al., 2009). Evidence suggests that Latina breast cancer patients, particularly homemakers, experience more family and work burdens than women of other ethnic groups, and that this high degree of functional strain contributes to lower


4
emotional well-being (Ashing-Giwa & Lim, 2010). Latina patients have explained that they often feel upset at spousal expectations to maintain the same level of responsibility at home, despite their illness; at the same time, many of these women try to avoid the sick-role to prevent feeling like a burden to their families (Ashing-Giwa et al., 2006). Latina patients with breast cancer also explained several worries about outside employment, such as feeling embarrassed about their diagnosis and not disclosing this information, not being able complete work responsibilities due to treatment side effects, and worrying that their coworkers or boss reactions would affect their career (Ashing-Giwa et al., 2006). Fatone and colleagues (2007) also noted high levels of social and functional strain among minority breast cancer patients. In a recent systematic review, Yanez, Thompson, and Stanton (2011) concluded that Latinas tended to experience poorer quality-of-life outcomes in mental, physical, and social domains than women of other ethnic groups.
Some research suggests that Latina breast cancer patients express more psychological distress with regard to breast cancer, including sadness, depression, and body image concerns compared to non-Hispanic White women (Fatone et al., 2007; Giedzinska, Meyerowitz, Ganz, & Rowland, 2004; Spencer et al., 1999). Other studies have failed to find differences between Latina and non-Hispanic White breast cancer patients with regard to reported level of distress, including depressive symptoms and body image (Culver, Arena, Antoni, & Carver, 2002; Christie, Meyerowitz, & Maly, 2010). Nonetheless, depression and body image are particularly salient concerns for Latina breast cancer patients (e.g., Ashing-Giwa et al., 2006; Christie et al., 2010; Galvan, Buki, & Garces, 2009; Moadel, Morgan, & Dutcher, 2007). In one study, nearly three-


5
quarters (72.7%) of Latina breast cancer patients reported that they desired help learning how to cope with their sadness (Moadel et al., 2007). In another, 38% of Latina breast cancer patients reported symptoms consistent with a diagnosis of depression (Christie et al., 2010). Latina breast cancer patients specifically described depression, feelings of isolation, and feeling emotionally overwhelmed as common reactions to breast cancer diagnosis and having to face a series of difficult personal and medical decisions (Galvan et al., 2009). Furthermore, these patients commonly described sadness, embarrassment, and frustration as reactions to the physical changes they endured during their breast cancer treatments, including hair and/or breast loss and weight gain (e.g., Ashing-Giwa et al., 2006; Giedzinska et al., 2004).
Some Latinas also discussed feeling incomplete as a woman, particularly following the loss of hair or a breast during treatment (Ashing-Giwa et al., 2006). Younger Latinas in particular (under age 50) have demonstrated the highest degree of concern about their physical appearance (Ashing-Giwa et al., 2010). Many of these younger women have less stable relationships than their older counterparts; therefore, their concerns regarding body image are also closely tied to fear of rejection by their partners (Ashing-Giwa et al., 2010). Many Latina women fear being rejected by their partners as a wife due to a missing breast (Ashing-Giwa et al., 2010). Although Christie and colleagues (2010) did not find differences in reported depressive symptoms or body image concerns between Latina and non-Hispanic White breast cancer patients, they did find that Latinas reported significantly worse sexual functioning, even when controlling for covariates. Latina breast cancer patients specifically reported less sexual desire, more difficulty becoming aroused, difficulty being able to relax and enjoy sexual experiences,


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and greater difficulty achieving orgasm compared to non-Hispanic White women (Christie et al., 2010). For example, a large portion (71%) of Latina women reported that they were not interested in sexual activity (Christie et al., 2010). Similarly, Spencer and colleagues (1999) also found that Latina breast cancer patients reported a greater degree of sexual disruption than women from other ethnic groups, and demonstrated greater concerns regarding their intimate relationships.
Anxiety is also common among Latina breast cancer patients, especially regarding medical procedures, physical well-being, long-term treatment side effects, financial concerns, and family worries (Ashing-Giwa et al., 2004; Spencer et al., 1999). Fear of recurrence and fear of rejection by their partners have been found to be especially prevalent among Latina breast cancer patients when compared to their non-Hispanic White counterparts (Ashing-Giwa et al., 2004; Spencer et al., 1999). Moadel and colleagues (2007) results highlight just how common anxiety is among Latina breast cancer patients: 84.4% of the Latina breast cancer patients sampled desired information about general stress management. Specifically, over half of the sample reported wanting help managing worries about their family (54.7%) and over two-thirds desired support overcoming their fears (68%) (Moadel et al., 2007). High levels of psychological distress have also been shown to decrease social support from friends and family (with the exception of spouses) for Latina breast cancer patients, perhaps because others perceive high levels of distress as aversive (Alferi et al., 2001). Therefore, interventions that aim to help patients manage their distress early on during diagnosis and treatment could be especially beneficial.


Latina breast cancer patients have described the importance of social support during breast cancer diagnosis and treatment (e.g., Buki, Garces, Hinestrosa, Kogan, Carrillo, & French; 2008), and previous research has demonstrated that psychosocial support can reduce pain and distress and improve adjustment to breast cancer during treatment (Galvan et al., 2009; Sammarco, 2003; Napoles-Springer, Ortiz, OBrien, Diaz-Mendez, Perez-Stable, 2007). Latina breast cancer patients have described support from family, health professionals, staff, and breast cancer survivors as important sources of social support, helping them feel more optimistic and empowered to fight against the disease (Ashing-Giwa et al., 2006; Buki et al., 2008). Latina women tended to perceive support from their families as absolutely vital to their emotional well-being; this was especially true for women who received support from their male partner or spouse (Galvan et al., 2009). This reliance on family may be partially related to the cultural tendency for a strong emphasis on family support, especially during times of illness or stress, known as familialism (Diaz, 2002).
Alferi and colleagues (2001) specifically demonstrated how emotional support from friends and instrumental support from spouses at the beginning of treatment was associated with less psychological distress after surgery. Unfortunately, patients lacking adequate social support had less optimism about their futures and were less sure about their treatment decisions (Buki et al., 2008). Despite the importance of social support during the breast cancer treatment journey, Latina patients perceive less social support overall than their non-Hispanic White counterparts and express more concern over social rejection by loved ones (Sammarco & Konecny, 2010; Janz et al., 2008; Spencer et al.,
1999). Many Latina breast cancer patients describe feelings of isolation during breast


8
cancer and experience a sense of secrecy or shame about the diagnosis (Lopez-Class, Gentil, Kreling, Caicedo, Mandelblatt, & Graves, 2011). Although non-Hispanic White patients may have greater access to different types of social support, research suggests that Latina patients receive slightly more support from their spouses and family members than members of other ethnic groups (Sammarco & Konecny, 2010). This seems to be particularly true of Latina patients who have family in the United States; those who lacked a close family network tended to rely on support groups and spirituality for emotional support (Galvan et al., 2009). Older Latina patients or those without family in the United States may be especially susceptible to low social support. As previously described, Latina patients with higher levels of distress may also experience an erosion of support from friends and family members (except spouses) over time (Alferi et al., 2001). Latina patients have also explained that they do not want to rely on their families for emotional support during breast cancer, as they want to avoid burdening family members with inconvenience or emotional distress (Ashing-Giwa et al., 2006). Despite Latinas need for social support during breast cancer diagnosis and treatment, they are less likely than their non-Hispanic White counterparts to have access to or participate in psychosocial services (Bowen et al., 2007; Napoles-Springer et al., 2007).
Regardless of race/ethnicity, a majority of breast cancer patients report many ongoing physical and psychological symptoms related to cancer treatment, especially musculoskeletal pain, fatigue, difficulty sleeping, hot flashes, and sexual disruption (Fatone et al., 2007; Fu et al., 2009). However, when compared to non-Hispanic White women, Latina breast cancer patients were over two times as likely to report being in poor or fair health, reported more chemotherapy-related pain symptoms, and were more


9
likely to report a greater total number of pain symptoms (Fu et al., 2009; Giedzinska et al., 2004). Giedzinska et al. (2004) also indicated that physical symptoms caused the greatest amount of distress for Latinas with breast cancer; these physical symptoms were the strongest predictor of quality of life among these women. Latina women were also found to report more concerning symptoms when they had lower incomes and when they received chemotherapy (Giedzinska et al., 2004). Evidence also suggests that Latinas, especially Spanish-speaking and low-income Latinas, report higher pain severity than women of other ethnic groups (Mosher, DuHamel, Eget, & Smith, 2010). Mosher et al. (2010) explained that Latinas higher pain severity was likely related to misconceptions about how to manage pain and confusion about how to address pain issues with their healthcare team, highlighting a need for improved patient-provider communication.
These disparities in physical pain symptoms are especially concerning, as greater physical symptoms and breast cancer treatment side effects have been associated with increased psychological distress and lower quality of life (Chang, Hwang, Feuerman, & Kasimis, 2000; Jim, Andrykowski, Munster, & Jacobsen, 2007). Although Latina patients may have a tendency to express emotional distress with physical symptoms (Giedzinska et al., 2004; Kaplan & Marks, 1999), numerous studies highlight the high levels of emotional distress also reported by this population (e.g., Ashing-Giwa et al., 2006; Christie et al., 2010; Galvan et al., 2009; Moadel et al., 2007; Spencer et al., 1999), making reports of high pain less likely related to somatization.
Poor patient-provider communication and low health literacy are common among Latina patients and can impede access and adherence to treatment, understanding of diagnosis and treatment, as well as contribute to the high levels of decisional regret that


10
Latina breast cancer patients experience (e.g., Buki et al., 2008; Hawley et al., 2008). Language is a significant barrier in patient-provider communication, and many Latina patients have reported that interpretation services are overwhelming and exhausting, limiting their willingness to ask additional questions or clarify health concerns (Ashing-Giwa et al., 2006; Galvan et al., 2009; Buki et al., 2008). Evidence suggests that Spanish-speaking Latina breast cancer patients have significantly less knowledge about the disease and its treatment than other low-income women from different ethnic groups (Chen, Diamant, Thind, & Maly, 2008; Janz, Mujahid, Hawley, Griggs, Hamilton, & Katz, 2008). Research suggests that lack of knowledge about breast cancer likely also stems from additional factors such as low educational attainment, a dearth of information available in Spanish, health insurance status, and failure of medical staff to ensure clear communication (Ashing-Giwa et al., 2006). Cultural beliefs are also likely to affect Latina breast cancer patients communication with healthcare providers (e.g., Ashing-Giwa et al., 2006; Galvan et al., 2009; Sammarco & Kocecny, 2010). Latina patients may defer treatment decisions to their healthcare providers without question due to the cultural value of respeto, which emphasizes showing respect for individuals of higher status, such as doctors (Ashing-Giwa et al., 2006; Galvan et al., 2009). In one study,
40% of medically underserved patients were unaware of their breast cancer diagnostic stage (Fatone et al., 2007). It is also common for Latina breast cancer patients to misunderstand their diagnosis, treatments, and other cancer-related information (Ashing-Giwa et al., 2006; Garces et al., 2008). Additionally, Latina breast cancer patients report higher levels of uncertainty during treatment than their non-Hispanic white counterparts


11
(Galvan et al., 2009; Sammarco & Konecny, 2010) which may be due, in part, to poorer patient-provider communication.
With regard to treatment decision dissatisfaction and regret, Latina breast cancer patients are at particularly high risk (Hawley et al., 2008). Spanish-speaking Latinas were 8.7 times more likely to be highly dissatisfied with their treatment decisions and were 9.4 times more likely to regret their decisions than non-Hispanic White patients, although these odds ratios decreased to 5.6 for both dissatisfaction and regret when the researchers controlled for confounding variables such as age, education, marital status, and tumor size, histology, and behavior (Hawley et al., 2008). Overall, it is clear that Hawley et al.s (2008) results highlight that Spanish-speaking Latina breast cancer patients are several times more likely than their non-Hispanic White counterparts to experience treatment dissatisfaction and regret. Latina patients self-efficacy in interacting with their healthcare providers, along with healthcare providers emotional support, are predictive of Latinas knowledge of breast cancer, whereas the quantity of written and verbal information are not (Chen et al., 2008). The research findings outlined above highlight the need to develop interventions designed to enhance patients knowledge of breast cancer and treatment options through increased self-efficacy and improved patient-provider communication.
A formal assessment of the psychosocial needs of cancer patients highlights that Latina patients desire additional support during diagnosis and treatment (Moadel et al., 2007). In this assessment, male and female Latino patients identified psychosocial needs spanning several domains. Informational support was the most endorsed need among Latino patients; this included assistance learning more about cancer, its treatment, how to


12
manage side effects and other symptoms, as well as lifestyle change (Moadel et al., 2007). Supportive needs were also rated very highly among Latino patients, including assistance with coping, stress management, and maintaining relationships. These patients reported needing additional practical support including financial support and transportation assistance, as well as spiritual support, such as finding hope, exploring the meaning of life, and discussing death and dying when necessary (Moadel et al., 2007). The number of Latina patients that reported that they would want spiritual support during their breast cancer experience (60%) was nearly twice as many as non-Hispanic White patients (31%) (Moadel et al., 2007). This is consistent with other research highlighting the importance of faith as a coping mechanism, although significant spiritual and existential needs remain for many Latina breast cancer patients (Ashing-Giwa et al., 2010; Fatone et al., 2007; Moadel et al., 2007; Spencer et al., 1999). Notably, Latino patients demonstrated the greatest need for practical, supportive, and spiritual support compared to both non-Hispanic White and African-American patients (Moadel et al., 2007); this is consistent with other research highlighting psychological disparities affecting Latino cancer patients (e.g, Janz et al., 2009; Fatone et al., 2007; Giedzinska et al., 2004; Janz et al., 2009; Spencer et al., 1999). Galvan, Buki, and Garces (2009) also concluded that formal emotional, informational, and instrumental support services are crucial for Latina breast cancer patients undergoing treatment in order to enhance quality of life.
Psychological Interventions for Breast Cancer Patients A recent meta-analysis assessing the efficacy of randomized, controlled trials of psychological interventions for breast cancer patients revealed that they are generally helpful for patients during cancer diagnosis and treatment (Naaman, Radwan, Fergusson,


13
& Johnson, 2009). Specifically, the individual and group interventions included in the study were associated with at least moderate improvements in anxiety and depression, and overall strong effects on functional quality of life. Patients with clinically significant levels of distress tended to reap greater benefits than those patients who participated in psychological treatment to prevent further distress. In general, short-term, coping-focused interventions (defined as less than 20 hours) were found to be more effective for patients with earlier stage cancers, whereas long-term, support-focused interventions were best for patients with advanced cancers. Despite these positive findings, medically underserved patients, such as Latinas, are not adequately represented in the majority of breast cancer intervention studies aimed at improving quality of life and decreasing psychological distress (Naaman et al., 2009).
As previously discussed, Latina breast cancer patients tend to have poorer outcomes compared to their non-Hispanic White counterparts across the cancer care continuum, spanning from screening to survivorship (CCC, 2011; Curtis et al., 2008; Howe et al., 2006; Molina, Thompson, Espinoza, & Ceballos, 2013). The majority of research dedicated to reducing or eliminating these health disparities has generally focused on the early stages of cancer care, such as improving mammography screening rates and decreasing delays to follow-up regarding abnormal screening results (Molina et al., 2013; Robinson-White, Conroy, Slavish, & Rosenzweig, 2010). Other studies have focused on evaluating patient navigation programs as a method to improve timeliness and adherence to care, generally by helping patients overcome a variety of logistical and financial barriers to cancer diagnosis and treatment (Molina et al., 2013; Wells et al., 2008). Although these are all important steps to reduce breast cancer disparities,


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substantially less attention has been paid to the development and evaluation of psychosocial interventions designed to improve quality of life and address psychological concerns among Latina breast cancer patients (Molina et al., 2013). Given the significant psychosocial and psychoeducational needs of Latina breast cancer patients (e.g., Ashing-Giwa, 2008; Moadel et al., 2007; Spencer et al., 1999), the lack of culturally- and linguistically-appropriate programs to serve this population during diagnosis and treatment is especially troublesome.
There is some evidence suggesting that collaborative care interventions, wherein multiple types of specialty providers work together to address patient needs, may be a helpful way to address the needs of Latina breast cancer patients (Dwight-Johnson, Ell, & Lee, 2005; Ell et al., 2011; Ell et al., 2008). Dwight-Johnson and colleagues (2005) evaluated a collaborative care intervention for Latina breast and cervical cancer patients with comorbid major depressive symptoms. The program consisted of eight weekly meetings with a social worker who delivered manualized psychotherapy (problemsolving psychotherapy), patient education, and system navigation, along with antidepressant medication provided by the patients oncologist or psychiatrist. Intervention patients demonstrated improved emotional well-being and were more likely to have reduced their depressive symptoms by half, compared to control group participants (Dwight-Johnson et al., 2005). Additional year-long collaborative care interventions among a predominantly Latina cancer population showed similarly positive outcomes, including reduction of depressive symptoms and improved social, functional, emotional, and physical well-being (Ell et al., 2011; Ell et al., 2008). These results suggest that collaborative care interventions can be a useful method for working with


15
Latina breast cancer patients. It is important to consider, however, that these programs were somewhat narrow in focus; all participants endorsed depressive symptoms and addressing those concerns was the focus of treatment. Other concerns, such as communication with health care providers, spirituality, anxiety, coping with treatment side effects, and body image issues, all commonly reported by Latina patients with breast cancer (e.g., Ashing-Giwa et al., 2004; Garces et al., 2008; Moadel et al., 2007; Spencer et al., 1999) were not explicitly addressed.
Formative research about the development and use of peer support interventions among Latina breast cancer patients has also been recently reported. Napoles-Springer and colleagues (2009) completed a series of in-depth interviews with Latino cancer patients who were referred for psychosocial services, Latina breast cancer survivors, and advocates for Latina breast cancer patients. Results indicated that Latino cancer patients who had utilized peer psychological support services generally described them as positive, noting that emotional support, feeling understood in their cancer experience, and learning how to manage anxious and depressive symptoms were among the most valuable aspects of treatment (Napoles-Springer et al., 2009). These patients described a need for additional information on cancer, treatment, treatment side effects, and community resources, which is consistent with previous research (e.g., Moadel et al., 2007; Napoles-Springer et al., 2009). They explained that support programs should address topics such as fear of impending death, hope, self-advocacy, spirituality, and communication. This study also provided a clear recommendation that future programs should begin close to diagnosis and that in-person and telephonic interventions are generally feasible methods to use with Latina breast cancer patients (Napoles-Springer et al., 2009). Additional


16
research on the use of peer support groups highlights the importance of the family in Latino culture (Napoles-Springer et al., 2007). In one study, Latinas whose families strongly encouraged them to attend a support group were approximately seven times more likely to do so than Latinas whose families did not provide encouragement. The only peer support intervention for Latina breast cancer patients identified in the literature focused on using a trained cancer survivor as a navigator to help patients make informed treatment decisions (Sheppard et al., 2008). Although the intervention was brief, lasting only 40 to 120 minutes, program participants reported improved communication and decision-making skills, and were highly satisfied with their interactions with the cancer survivor (Sheppard et al., 2008). These results are promising, although, like other programs, it was limited in scope and did not address many of the significant, ongoing psychological needs of this underserved population.
Other researchers have begun to explore technology as a means to reach underserved Latina breast cancer patients. Ashing-Giwa (2008) created a culturally sensitive telephone intervention, consisting of six cognitive-behavioral sessions on a variety of topics including relational concerns, communication, stress management and relaxation, medical and treatment concerns, psychological concerns, and general self-care. The telephone intervention was designed to be flexible to address unique patient needs, and was feasible among Latina breast cancer patients. Participants expressed gratitude for the opportunity to discuss their experiences with a culturally and linguistically competent counselor, and described the stress management sessions as especially useful. Results indicated significant improvements in physical well-being and overall quality of


17
life, with nonsignificant positive trends for family/social, functional, and well-being noted from pre- to post-intervention (Ashing-Giwa, 2008).
Changrani and colleagues (2008) created an online support group intervention for Latina immigrants with breast cancer. The participants in this program met online weekly for 90 minutes with a small group of other breast cancer patients and a trained, bilingual group facilitator, over a period of 30 weeks. The online support groups discussed a variety of topics, including managing treatment side effects, isolation, and relationship concerns. Although the researchers determined that online support groups were a feasible method for working with Latina breast cancer patients, the intensive intervention did not lead to any significant changes from pre-intervention to postintervention (Changrani et al., 2008). A computer-based intervention was also developed to help Latina breast cancer patients learn more about their treatment options and the decision-making process (Jijaba-Weiss et al., 2011). This intervention consisted of soap opera-like stories paired with learning modules. This brief intervention increased patients knowledge of treatment options and helped them to more clearly understand the relevant factors in the treatment decision-making process. Furthermore, none of the Latinas who participated in the computerized intervention reported being unsure about their surgery choice, whereas 10.5% of control group participants indicated feeling unsure about their decision (Jijaba-Weiss et al., 2011). While computerized interventions may hold some promise for reaching Latina breast cancer patients, it is clear that much more research needs to be conducted on this possibility.
Overall, research demonstrates that psychological interventions have been effective in addressing mental health needs of breast cancer patients; however,


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researchers have not assessed comprehensive culturally and linguistically-appropriate programs delivered in-person for Latina patients (Naaman et al., 2009). The lack of psychosocial support programs for Latina breast cancer patients is especially worrisome, given their high levels of reported psychosocial needs (e.g., Ashing-Giwa, 2008; Moadel et al., 2007; Spencer et al., 1999). Studies to date suggest a variety of intervention styles are feasible for use with Latina breast cancer patients, including collaborative care (Dwight-Johnson et al., 2005; Ell et al., 2011; Ell et al., 2008), in-person and telephonic programs (Ashing-Giwa, 2008; Napoles-Springer et al., 2009), and online interventions (Changrani et al., 2008; Jijaba-Weiss et al., 2011). The strongest available evidence thus far is for the use of collaborative care programs, which have been shown to improve depressive symptoms in Latina cancer patients (Dwight-Johnson et al., 2005; Ell et al., 2011; Ell etal., 2008).
Summary
Overall, evidence is clear that Latina patients generally experience significant physical and psychosocial disparities during breast cancer diagnosis and treatment compared to women of other ethnic groups. Research indicates that Latinas demonstrate a particularly high degree of psychosocial distress and have many unmet needs during their treatment journeys (e.g., Moadel et al., 2006; Spencer et al., 1999). Sadness, depression, anxiety, body image concerns, inadequate social support, difficulty with pain management, poor patient-provider communication, and a high rate of decisional dissatisfaction and regret are prevalent among this population (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). Despite the psychosocial disparities that Latina breast cancer


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patients face, there has been very little research conducted on programs to ameliorate these disparities and address the needs of these patients (e.g., Ashing-Giwa, 2008; Changrani et al., 2008; Dwight-Johnson et al., 2005; Jijaba-Weiss et al., 2011). No comprehensive, in-person interventions were identified in the literature that addressed a variety of Latina patients needs during breast cancer diagnosis and treatment. Thus, our research team devised a psychosocial and psycho-educational intervention informed by both the extant literature and our own formative research. The purpose of the present study is to determine if such an intervention may be feasible and acceptable to Latina breast cancer patients.
Research Questions
1. How did Spanish-speaking Latina breast cancer patients perceive the content of the AYUDA intervention?
a. What did these patients identify as the most helpful topics of the intervention?
b. What did these patients identify as the least helpful topics of the intervention?
c. What topics, that were not included in the intervention, did these patients identify would have been helpful to discuss during breast cancer treatment?
d. What did these patients identify were the most helpful techniques (or methods) used during therapy?
2. How did Spanish-speaking Latina breast cancer patients perceive the psycho-educational materials provided in the AYUDA intervention?


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a. According to these patients, how were the vignettes helpful to reflect on issues that commonly arise during breast cancer treatment?
b. How much did these patients feel they could relate to the characters portrayed in the vignettes?
c. How useful did these patients think it was to read the vignettes as homework before the next session?
d. In what ways were the psycho-educational booklets/pamphlets useful for learning more about how to deal with breast cancer?
3. Were the assessment instruments used in the AYUDA intervention appropriate with low-literacy Spanish-speaking Latina breast cancer patients?
a. How many patients were able to complete the measures individually?
b. How relevant did the patients feel that the assessments were to their experience of going through breast cancer treatment?
c. Were there any assessment measures or items that these patients could not understand or thought were confusing to them?
d. Were there any assessment measures or items that these patients felt uncomfortable answering?
4. Were Spanish-speaking Latina breast cancer patients interested and able to participate in the AYUDA intervention while in treatment?
a. What was the intervention recruitment rate?
b. What was the intervention retention rate?
c. What was the attendance rate (number of sessions scheduled/number of
sessions attended)?


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d. According to these patients, what motivated them to attend therapy appointments?
e. What factors explained these patients missing sessions or discontinuing the program?
f. To what degree did meeting with a counselor on the same day as a medical appointment affect the ability of these patients to participate in the intervention?
5. What feedback did the AYUDA participants have regarding the delivery of the AYUDA intervention?
a. What did these patients identify as the benefits and drawbacks of in-person individual sessions?
b. What did these patients identify as the benefits and drawbacks of telephone sessions?
c. How helpful did patients find the combination of in-person and over-the-phone sessions, and why?
d. Overall, did these patients prefer individual or telephone sessions?
e. How many sessions were conducted in-person and on the telephone?
f. What feedback did these patients provide regarding the length and number of sessions?
g. What was the average length of sessions that patients participated in?
h. What feedback did patients have regarding the timing of when the intervention was introduced along their cancer care continuum?


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i. What feedback did patients have regarding the timing of when the intervention concluded along their cancer care continuum?


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CHAPTER II METHODS Research Design
This study was a feasibility study and employed a one-group, intervention-only research design. Particular attention was given to process evaluation of the intervention. The intervention being assessed in this study was the second phase of a larger research project. The first phase consisted of formative research to gather information to develop the intervention through interviews with Spanish-speaking breast cancer survivors and their healthcare providers. The second phase consisted of designing the intervention, implementing it, and evaluating it to determine its feasibility and acceptability. The intervention design was guided by both the extant literature as well as information gathered from the formative interviews conducted in the first phase of the larger study. All study procedures and materials were approved by the Colorado Multiple Institutional Review Board (COMIRB).
Formative Research
Due to the limited information in the literature, the research team conducted formative interviews with Latina breast cancer survivors and key informants (breast cancer healthcare providers and hospital staff) to better understand the patients treatment journeys and gather recommendations for the development of a comprehensive psychosocial and psychoeducational intervention for this population. This study sought to assess the feasibility and acceptability of a newly developed psychosocial and psychoeducational support intervention for Spanish-speaking Latina breast cancer patients. The intervention design was guided by the few extant research studies reviewed


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above, as well as results from the formative research phase of the intervention. Findings from these preliminary interviews are summarized below.
Latina patients. Breast cancer survivors explained important patient characteristics, the cancer experience, and the hospital experience, along with general program recommendations. Survivors highlighted communication with providers, language barriers, cancer literacy level, available cancer resources, and health beliefs as important themes. Regarding the cancer experience, survivors discussed the process of diagnosis and treatment along with psychological distress and coping mechanisms. A large part of the discussion focused on fear and anxiety, treatment side effects, and the importance of family support and spirituality.
Healthcare providers. Key informants expanded on patient factors, healthcare system factors, and the patients treatment experience. Key informants reported that important patient factors to consider during intervention design included educational level, literacy level, misconceptions about cancer, and psychological concerns. Specifically, fear of cancer, anxiety, depression, relationship concerns, body image issues, and facing an overwhelming experience were noted as key sources of psychological distress. These healthcare providers explained available psychological resources and breast clinic logistics at Denver Health. They also suggested that helping patients understand treatment side effects, support for lifestyle modification, and an emphasis on treatment adherence should be included as intervention topics. Survivors and key informants alike also provided specific suggestions regarding the intervention content, delivery of information, and the timing and scheduling of the intervention. These


25
suggestions were carefully considered during program creation, and are noted in the Intervention Overview.
Participants
Participant inclusion criteria required that all women had to be Spanish-speaking Latinas with breast cancer, between the ages of 18 and 89 years of age, and had to have received breast cancer treatment at the safety net hospital in Denver, Colorado. As a safety net hospital, Denver Healths mission is to provide level one care for all, regardless of ability to pay; this institution has provided billions of dollars worth of uncompensated medical care to underserved patients (Denver Health, 2013). Patients with any breast cancer stage (0 to IV) were eligible for participation in this study. Study exclusion criteria consisted of the following mental health conditions: diagnosed cognitive impairments, drug or alcohol abuse, and current or past history of suicidal ideation/attempts. Refusal of treatment at the safety net hospital was also an exclusion criterion.
In 2012-2013, 54 Hispanic women were diagnosed with breast cancer at Denver Health. These women ranged from 31 to 83 years of age (M= 54.69, SD = 11.29). In the same time period, 41 non-Hispanic White women were diagnosed with breast cancer at Denver Health. These women ranged from 31 to 94 years of age (M= 59.68, SD =
12.30). Interestingly, an independent t-test revealed that during this time period,
Hispanic patients tended to be significantly younger at breast cancer diagnosis than non-Hispanic White patients (t = 2.06, p = .04).


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Procedures
Recruitment
All participants in this study were recruited from a safety net hospital in Denver, Colorado. This safety net hospital serves over 250,000 residents who reside in several medically underserved areas. A Spanish-speaking patient navigator employed in the Division of Hematology/Oncology at the safety net hospital recruited patients for this study. Patients were targeted for participation as closely following their formal diagnosis of breast cancer as possible. This patient navigator had authorized access to patient information and made the initial contact to screen patients for study participation in person or by telephone. She also invited eligible patients to participate in this study. Patients who expressed interest in participation were given an appointment time to individually meet with one of the intervention therapists. Patients did not receive compensation for their participation in this intervention to assess whether or not patients were intrinsically motivated to participate in the program versus motivated by monetary compensation.
The study therapists reviewed the informed consent with each patient.
Participants were consented in a private office within the hospital where only the therapist and patient were present, free from disruption. Patients were provided with oral and written explanations of the research study in Spanish; each individual was given an opportunity to ask questions about the terms of study participation. Patients who decided to participate in the study were asked to sign a combined informed consent and HIPAA form prior to the start of the intervention. Patients were also provided with a copy of this
form to take home.


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Intervention Therapists
The intervention therapists were both female doctoral-level trainees in the Clinical Health Psychology Ph.D. program at the University of Colorado Denver. Each therapist was bilingual in English and Spanish and had completed the foundational coursework to deliver direct psychological care to patients. A licensed clinical psychologist met with the therapists for weekly supervision in order to monitor patient progress and provide recommendations for patient care.
Intervention Overview
The primary aims of the intervention were to increase patient quality of life, enhance patient empowerment and self-efficacy, and increase treatment adherence. The intervention was designed to address common issues that Latina breast cancer patients encounter during treatment, as identified in the literature and from recommendations gathered from the breast cancer survivor and healthcare provider interviews conducted in the first phase of the larger study. An assessment among underserved cancer patients indicated that Latino patients reported the highest degree of overall need, including needs in the informational, practical, supportive, and spiritual domains (Moadel et al., 2007). Following these recommendations, this intervention focused on informational, supportive, and spiritual needs. An on-site, bilingual, Oncology/Hematology patient navigator was primarily responsible for attending to the practical needs of patients. Another key component of the intervention design was flexibility to accommodate individual patient needs. The intervention was guided by a cognitive-behavioral theoretical orientation.
Voss Horrells (2008) review concludes that a cognitive-behavioral approach appears to be an effective intervention strategy for Latina women.


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Intervention delivery. The intervention began as soon as possible following a patients diagnosis of breast cancer and continued during the patients course of breast cancer treatment, as advised by the majority of healthcare providers interviewed during the formative phase of the larger study. The program was designed to include five to eight weekly therapy sessions lasting approximately 30 minutes to one hour. These sessions took place in a private office at the safety net hospital to maintain patient confidentiality. All therapy sessions were conducted in Spanish and audio recorded for supervision purposes.
In addition to individual live therapy sessions, some patients also received telephone therapy sessions or less formal check-in calls in-between their live sessions. Telephone sessions generally occurred when a patient was unable to make her regularly scheduled appointments, was unavailable during clinic hours, or had another reason why she was unable to meet in person. Approximately half of the breast cancer survivors interviewed in the formative phase of the larger study indicated they would prefer in-person sessions, whereas the rest of the women preferred telephone sessions. The decision to include a combination of in-person and telephone sessions was driven by the clear need to remain flexible to varied patient needs and preferences. Some women also expressed an interest in group therapy during their interviews. The research team decided not to pursue a group-based intervention, as the bilingual patient navigator recently began a support group for Spanish-speaking breast cancer patients. Thus, the Spanish-speaking Latina breast cancer patient population at Denver Health still lacked individual psychological support services.


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Intervention topics. The intervention topics included required sessions on general introduction and health education, communication, coping with treatment side effects, cultural beliefs and spirituality, self-care, as well as optional additional sessions that focused on body image issues and coping with distress. The order of these sessions was designed to flexibly meet the needs of the individual patient. With the exception of the first session (intake/general introduction and health education) and the final session (self-care), patients were permitted to complete the intervention topics is any order, allowing them to work with their therapists to prioritize the most personally relevant topics during certain phases of breast cancer treatment. Patients experiencing greater levels of distress had the option of three additional sessions to address body image, depression, and anxiety, whereas patients who felt they were coping well did not have to focus on these topics.
Introductory session. The first intervention session was designed to serve as a brief intake assessment, as well as a general introduction to the program and breast cancer health education. The purpose of the first session was to assess patient psychosocial needs, normalize the often overwhelming experience of having breast cancer, and provide education regarding cancer treatment. Interviews conducted during the formative phase of the larger research project revealed that survivors and healthcare providers alike commented on the overwhelming experience these women face when they receive their initial diagnosis of breast cancer. These interviews also showed that many providers are concerned about Latina patients low level of cancer literacy. Providers elaborated that many Latina patients misunderstood their cancer and had misconceptions about the course of treatment. Interviews with Latina breast cancer


30
survivors supported these findings, as many of these women reported misunderstanding their diagnostic stages and being confused about their treatment. Research also highlights the need for interventions to increase Latina breast cancer patients knowledge of breast cancer diagnosis and treatment (e.g., Fatone et al., 2007; Moadel et al., 2007). Patients were given booklets titled Understanding Breast Cancer (Lo que debe saber sobre el cancer del send), which featured information about breast cancer and its treatment (Krames Patient Education, 2011). The intervention called for therapists to review the information presented in the booklet with patients and encourage discussion about these topics in the first session. During this introductory session, the therapists also administered the socio-demographic questionnaire and all pre-intervention measures (described below). If patients were willing and able to complete the measures independently, they were allowed to take the measures home in a manila envelope to complete and return at the start of the next session.
Communication session. Communication was another required topic in the intervention. The communication session was designed to increase patients sense of empowerment and self-efficacy to communicate with their healthcare team. As previously discussed, extant research indicates that among medically underserved women, greater self-efficacy in communicating with the healthcare team is predictive of increased breast cancer knowledge (Chen et al., 2008). Spanish-speaking patients have been shown to have poorer communication with healthcare providers, have misconceptions about the patient-provider relationship, and greater difficulty effectively managing pain (Mosher et al., 2010). Additionally, Hawley and colleagues (2008) found that Spanish-speaking Latina breast cancer patients were more likely to report too little communication and


31
involvement in treatment decision-making, as well as high levels of decisional regret. Poor communication was often cited during the healthcare provider interviews as an area of concern among Latina breast cancer patients. Providers noted several reasons for poor communication, including language barriers, difficulty with interpreters, and the patient being too overwhelmed to comprehend information provided. Providers also described how many Latina breast cancer patients seem to defer their treatment decisions to their healthcare providers without actively asking questions or considering alternative treatment options. The initial intervention design called for assertiveness training, role-playing, assisting with problem-solving, and enhancing patient self-efficacy as the primary methods of intervention. Patients were provided with the Spanish version of Questions to Ask Your Doctor About Breast Cancer (Preguntaspara el medico acerca del cancer de send) (Susan G. Komen for the Cure, 2008), which is a pamphlet containing a series of cards with important questions about various aspects of breast cancer, including diagnosis and treatment options. Therapists discussed the questions most relevant to each individual patients course of treatment and progress along their cancer care journey.
Coping session. Coping with side effects of treatment was also a required intervention topic. During the formative research interviews with breast cancer survivors during the first phase of the larger study, every survivor discussed the impact of side effects on her well-being during treatment. As previously noted, Latina breast cancer patients report a greater number of physical symptoms, especially pain symptoms, and experience greater overall symptom burden than women of other ethnic groups (Fu et al., 2009; Giedzinska et al., 2004; Spencer et al., 1999). The aim of the session on coping


32
with side effects was to increase patients ability to cope with these effects and enhance their quality of life. The plan for this session was for therapists to focus on emotion-focused coping skills, relaxation, activity pacing, and problem-solving to intervene with patients. Although not in the original plan, therapists often referred back to the booklet Understanding Breast Cancer (Krames Patient Education, 2011) to review treatment side effects. This booklet was distributed during the first introductory therapy session.
Cultural beliefs and spirituality session. A focus on spirituality and/or religion is a common aspect of Latino culture; therefore, the intervention design included this topic within the broader discussion about culture. Extant research and our formative interviews with Latina breast cancer survivors and their healthcare providers all indicated that cultural beliefs and spirituality play a significant role in Latina patients breast cancer treatment journey. As previously noted, research findings indicate that Latina cancer patients are more likely to use religious coping than non-Hispanic White women (Culver et al., 2002; Culver et al., 2004), and Moadel et al. (2007) found that Latina cancer patients endorsed the highest need for spiritual support compared to patients of other ethnic groups. More than half of the survivors interviewed described the importance of spirituality or their faith in coping with their breast cancer. Latina breast cancer survivors interviewed also commented on how other cultural beliefs and norms, such as the cause of cancer and female modesty, impacted their breast cancer experience. Because of the apparent significance of these topics, the intervention design included a session on cultural beliefs and spirituality for all patients in the study. This session was designed to focus on enhancing patient empowerment, coping, finding meaning and purpose, and included discussion of death or dying when relevant. This session relied heavily on


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empathy and acceptance as intervention strategies. Therapists also helped patients address cognitive barriers to treatment when appropriate.
Self-care session. The initial intervention design included a session on self-care as a final and required topic. The goal of this session was to help patients adhere to the remainder of their treatment and follow-up care, including follow-up appointments, diet and exercise recommendations, and long-term treatment when indicated (e.g., biological treatment regimens). Therapists and patients also reviewed progress and coping skills learned throughout the intervention. Although breast cancer survivors did not discuss treatment adherence during their interviews, several of the healthcare providers commented on the importance of this topic. Specifically, providers identified a need to work with patients on maintaining a regular lifestyle, weight management, increasing social engagement, and improving adherence to medical treatment. Intervention strategies in the self-care session included goal-setting and addressing cognitive barriers. Reinforcement of patient progress and improved coping and communication skills was also emphasized.
Body image session. In addition to the required topics described above, patients and therapists could also collaboratively decide if including a session on body image would be appropriate and beneficial to improving the patients quality of life. Body image was included as an optional topic, as the research team expected this topic to be very important for some women but less relevant for others, depending on the individuals own body image and coping resources, as well as individualized treatment plans. For example, the research team hypothesized that women who underwent mastectomies and/or experienced hair loss during chemotherapy would be more likely to


34
benefit from a body image discussion than women who had just a small lumpectomy and did not receive chemotherapy. In the formative interviews, all but one of the Latina breast cancer survivors described body image as a significant psychological concern, often related to feelings of sadness or depression. The most commonly reported body image issue was hair loss; however, breast loss and weight gain were also discussed during the interviews. The majority of healthcare providers interviewed described the negative impact that breast and/or hair loss can have on patients body image and quality of life. Some of these providers elaborated that younger breast cancer patients seem to be affected by body image issues to a greater degree than their older counterparts, and Spencer et al.s (1999) finding that younger breast cancer patients have a greater degree of sexual concerns during treatment is consistent with these reports. As previously discussed, evidence suggests that Latina women may experience a greater degree of distress related to body image and greater sexual dysfunction than women of other ethnic groups (Christie et al., 2010; Spencer et al., 1999). Due to the interrelatedness of body image issues and sexual dysfunction, there was an option to discuss of sexual dysfunction in this session, if relevant. As initially designed, the body image session relied on empathetic listening and cognitive restructuring as intervention strategies of choice.
Depression and anxiety sessions. Patients were also permitted to include up to two additional sessions focused on coping with distress if the patient and therapist agreed that the patient could benefit from a discussion about how to cope with depressive and anxious symptoms to improve quality of life. Based on previous research and the formative interviews with breast cancer survivors, the research team posited that most, but not all, of the women in the study would have significant depressive and/or anxious


35
symptoms that could be addressed in discussions about coping with distress. For women who did not experience depressive or anxious symptoms, a review of general coping skills would be sufficient, which could be included in the self-care module. The majority of breast cancer survivors interviewed during the formative phase of the study reported some psychological distress while undergoing breast cancer treatment. Survivors commonly reported depressive symptoms during treatment, and one survivor described becoming depressed as her initial reaction to her cancer diagnosis. Several patients described anxiety; the most common concerns included worries about their families, financial worries, and fears of suffering, side effects, and recurrence. Healthcare provider interviews also identified depression and anxiety, especially fear, as common psychological concerns during breast cancer treatment. As previously mentioned, research indicates that Latina breast cancer patients, especially those who are low in acculturative status or are homemakers, experience greater psychosocial distress and greater disruption of daily life than women of other ethnic groups (Ashing-Giwa & Lim, 2010; Janz et al., 2009; Spencer et al., 1999). Key intervention strategies for coping with distress included discussing emotion- and problem-focused coping strategies, relaxation techniques, pacing skills, and cognitive reframing when appropriate.
Psychoeducational materials. In order to encourage patients to open up to address their concerns during the therapy sessions, they were provided with fictitious patient case examples (vignettes) to read before several of their sessions (see Appendix A for English and Spanish versions). The majority of survivors interviewed during the formative phase of the larger study indicated that they would prefer to read and contemplate these stories at home before discussing them with the therapist. These short


36
vignettes were designed to illustrate the intervention topics, which reflect common experiences of Latinas as they progress through their cancer treatment journeys. Each vignette also featured a short series of questions to help Latinas reflect on their own experiences and ways of coping during breast cancer treatment. As described above, patients also received the booklet Understanding Breast Cancer (Lo que debe saber sobre el cancer del send) which was designed for use during the initial introduction and health education session (Krames Patient Education, 2011). Patients also received the pamphlet Questions to Ask Your Doctor About Breast Cancer (Preguntas para el medico acerca del cancer de send) during the communication session to facilitate discussion about patient-provider communication (Susan G. Komen for the Cure, 2008).
Assessment Instruments
Patients were asked to complete several assessment measures throughout their participation in the study. All measures were administered in Spanish and completed individually by the patient, unless she was unable to read. If a patient was unable to read the measures individually, the therapist or patient navigator administered the measures in an interview format. During the first session with the therapist, each patient was asked to fill out a socio-demographic questionnaire. This questionnaire addressed general topics such as the patients age, education level, employment status, and income bracket. The socio-demographic questionnaire also included items about the patients cancer, such as diagnostic stage and expected course of treatment. Finally, this questionnaire contained several items to assess the patients level of acculturation, including time spent in the United States and Latin America and preference for using the Spanish or English language. The remaining measures in this study were administered at pre-intervention at


37
the first session and post-intervention at the last session or during the exit interview (see Appendix B for copies of the English and Spanish versions of all instruments used.
Copies of instruments that were copyrighted are not included in the appendix).
Functional Assessment of Cancer Therapy-Breast Cancer (FACT-B). The FACT-B captures a wide variety of health-related quality of life topics, including physical well-being (7 items), social/family well-being (7 items), emotional well-being (6 items), functional well-being (7 items), and additional concerns related to breast cancer in particular (10 items) (Brady et al., 1997). Each item on the FACT-B contains one sentence and participants are to rate how true each item is for her on a 0-4 Likert scale ranging from not at all to very much. The FACT-B has been recommended for use in research and clinical practice due to its strong psychometric properties (Brady et al., 1997). Internal consistency for the FACT-B, as assessed by Cronbachs alpha, was high (a = .90). Alpha coefficients for the FACT-B subscales ranged from acceptable (a = .63 for the Breast Cancer subscale) to strong (a = .86 for the Functional Well-Being subscale). Test-retest reliability over a period of three days to one week was also high; the FACT-B total score correlation coefficient was .85 (Brady et al., 1997). The FACT-B measure was also found to be sensitive to change, as assessed by physician-rated performance status ratings and scores on a measure of functional living among cancer patients (Brady et al., 1997). Convergent validity was demonstrated through high correlations with a similar measure of functional living for cancer patients (r = .87, p < .01) (Brady et al., 1997). Alternatively, divergent validity was established by the relatively small correlations between the FACT-B and a social desirability scale, as well


38
as between the FACT-B subscales. An important strength of the FACT-B is its ability to discriminate between physical and psychosocial well-being in breast cancer patients.
The Functional Assessment of Cancer Therapy-General (FACT-G) measure is the basis of several more specific measures focusing on different types of cancers. For example, the FACT-B contains the same core items as the FACT-G (physical well-being, social/family well-being, emotional well-being, and functional well-being), with the addition of the 10 additional concerns items specific to having breast cancer. Celia and colleagues (1998) translated the FACT-G and five specific subscales, including the breast cancer subscale, from English into Spanish using a forward-backward-forward translation procedure, were carefully reviewed by bilingual/bicultural experts, and tested with a sample of Spanish-speaking oncology patients. The FACT-B was successfully translated into easily understandable wording and all but one of the items were perceived as culturally relevant. The culturally irrelevant item focused on death from illness; an additional item regarding the progression of illness was added. Initial validation studies indicated that psychometric properties of the Spanish FACT-B were similar to those of the original English version, and researchers concluded that the FACT-G and disease-specific subscales are equivalent enough to the English version for use in clinical research and practice (Celia et al., 1998).
Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-SP). In order to more fully understand patients spiritual well-being, participants were asked to complete the Additional Concerns portion of the FACIT-SP (Peterman, Fitchett, Brady, Pharm, & Celia, 2002). Similar to the FACT-B, the items of FACT-SP are rated on a 0-4 Likert scale of how much each statement is true for the


39
patient, ranging from not at all to very much. The Additional Concerns section of the FACIT-SP contains 4 items assessing the patients faith and 8 items assessing meaningfulness of life and peace. The remainder of the FACIT-SP was not administered, as it contains items identical to the FACT-B measure. The Faith and Meaning/Peace subscales, which comprise the Additional Concerns section that was administered, demonstrated good psychometric properties among a sample diverse with regard to age, ethnic background, type of cancer, and prognosis (Peterman et al., 2002). The sample also consisted of English- and Spanish-speaking participants; approximately 42% of the sample chose to complete the FACIT-SP in Spanish. With regard to reliability, each subscale had good internal consistency (Meaning/Peace a = .81, Faith = .88). Evidence of convergent validity was demonstrated through moderate to strong correlations between FACT-Sp and FACT-G subscales. The total FACT-G and FACIT-SP demonstrated a correlation of .58. Additional evidence of convergent and discriminant validity was established through correlations in the expected directions with other measures of mood, spirituality, and religion. Peterman and colleagues (2002) recommend the FACIT-SP for assessing spirituality across a wide variety of individuals with different spiritual or religious beliefs.
Brief Symptom Inventory 18 (BSI-18). The BSI-18 consists of 18 items that measure general distress and screen for psychiatric disorders (Derogatis, 2000). Each of the 18 items consists of one sentence and responses are indicated on a 0-4 Likert scale. This measure yields Depression, Anxiety, and Somatization subscales, in addition to a general measure of overall distress. The domains assessed by the BSI-18 were each found to have satisfactory reliability (Cronbachs a values range between .74 and .84)


40
(Derogatis, 2000). The general distress index also yielded good reliability (a = .89). The BSI-18 is a briefer version of the original Brief Symptom Inventory (BSI), and scores on the BSI-18 strongly correlate with scores from its longer predecessor (r > .90) (Derogatis,
2000). Galdon and colleagues (2008) conducted a study to further the validation of the BSI-18 among Spanish breast cancer patients and found good psychometric evidence. Internal consistency coefficients reported by Derogatis (2000) were slightly higher than those found in a sample of Spanish breast cancer patients; however, among this population, Galdon et al. (2008) concluded that the BSI-18 demonstrated good internal consistency for all scales: Somatization (a = .62), Depression (a = .73), Anxiety (a =
.72), and the overall Total Score (a = .82). Using confirmatory factor analysis, Galdon et al. (2008) also reported that the three-factor model was a satisfactory fit to the data obtained from their sample. These researchers conclude that the BSI-18 should be considered a potential instrument of choice for clinical and research evaluations of breast cancer patients (Galdon et al., 2008, p. 538). Because this measure is copyrighted, it is not included in the appendices.
Perceived Efficacy in Patient-Physician Interactions (PEPPI). To assess patient efficacy in communicating with their medical providers, the PEPPI was also administered (Maly, Frank, Marshall, DiMatteo, & Reuben, 1998). This brief measure consists of just five items focusing on various aspects of patient-provider communication. Consistent with Klooster and colleagues (2012), patients were provided with response options ranging from 1 to 5 {not confident to very confident), with total scores on this measure ranging from 5 to 25. This measure was originally validated among a sample of older adults (Maly et al., 1998). Internal consistency for the 5-item version was


41
satisfactory (a = .83) (Maly et al., 1998). The PEPPI was positively correlated with active coping, patient satisfaction, self-reported health, education, self-mastery, and physician communication and interpersonal manner, providing evidence for convergent validity. Furthermore, this measure demonstrated discriminant validity, as PEPPI scores negatively correlated with avoidant coping and restricted activity days (Maly et al.,
1998). This measure has not yet been fully validated among Spanish-speaking cancer patients; however, Maly and colleagues (1998) recommend the instrument for assessing the impact of interventions emphasizing patient empowerment, such as the current intervention. Liu et al. (2009) included the PEPPI in a study on the validity of self-report information among low-income, predominantly Latina breast cancer patients. In Liu et al.s (2009) study, the PEPPI maintained its good internal consistency when applied to this population (a = .96). Poorer patient-provider communication scores on the PEPPI were also related to less accurate reporting of cancer treatment and prognostic information, perhaps due to a lack of breast cancer-related knowledge (Liu et al., 2009). The PEPPI was translated from English to Spanish by a graduate-level bilingual research assistant, and was reviewed by another graduate-level bilingual research assistant.
Finally, the bilingual Principal Investigator (Evelinn Borrayo, Ph.D.) reviewed the translation for accuracy before approving the final version to be administered to patients.
Coping Self-Efficacy Scale (CSE Scale). The final measure that patients were asked to complete at pre- and post-intervention was the CSE Scale (Chesney, Neilands, Chambers, Taylor, & Folkman, 2006). The CSE Scale is designed to assess individuals own perceptions of their coping, not his/her actual coping strategies. This measure consists of 26 brief items, and participants rate how confident they are with regard to


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each statement on a scale of 1 to 10 (cannot do at all to certain can do). Among a sample of adults suffering from chronic illness, exploratory and confirmatory factor analyses identified three factors: problem-focused coping, stop unpleasant emotions and thoughts, and get support from fiends andfamily (Chesney et al., 2006). These factors are similar to the distinctions between emotion-focused coping, problem-focused coping, and social support, all of which are important concepts in CBT. Internal consistency was satisfactory for each of the identified domains, with Cronbachs alpha ranging from .80 for get support from fiends andfamily to .91 for use problem-focused coping and stop unpleasant emotions and thoughts. A key advantage of the CSE Scale is that improved coping self-efficacy has been found to predict greater psychological well-being and less overall psychological distress (Chesney et al., 2006). Although this measure has not yet been validated with Spanish-speaking individuals, it is still an important measure to include in the current study, as increasing patients perceptions of their ability to cope with the many stresses associated with breast cancer diagnosis and treatment is a central goal of the intervention. This measure was chosen due to its comprehensive coverage of different types of coping, as well as its short, simple item structure and Likert response format. A graduate-level, bilingual research assistant translated the CSE from English into Spanish; this translation was carefully reviewed by another graduate-level bilingual research assistant. Finally, the bilingual Principal Investigator reviewed the CSE translation for accuracy before approving the final version to be administered to patients.
Exit survey. In addition to the measures listed above that were administered both pre- and post-intervention, feasibility data was also gathered from patient exit surveys after their last counseling session. The patient navigator administered the exit surveys in


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order to reduce participant response bias. She also administered the post-intervention questionnaires when necessary. This exit interview captured the process of the intervention and focused on patient perspectives on the feasibility and acceptability of the intervention. Specifically, the exit survey assessed the intervention content, quality and usefulness of the psychoeducational materials, relevance and usefulness of the assessment measures, intervention delivery, and patient interest in the program.
With regard to acceptability of the intervention content, patients were asked to provide feedback on what they perceived to be the most and least helpful topics discussed. Patients were asked if they felt that any important topics related to their breast cancer experience were left out of the intervention. Finally, patients were asked if there were any specific exercises or techniques that were especially helpful during their participation in the intervention.
As previously mentioned, patients were provided with various psychoeducational materials in this intervention, including short vignettes on session topics, the Understanding Breast Cancer booklet (Lo que debe saber sobre el cancer del seno) (Krames Patient Education, 2011) and the Questions to Ask Your Doctor About Breast Cancer pamphlet (Preguntaspara el medico acerca del cancer de seno) (Susan G.
Komen for the Cure, 2008). In the exit survey, acceptability of the vignettes was assessed by asking patients if reading and reflecting on the vignettes before their counseling sessions was helpful, as well as if they felt like they could relate to the characters portrayed in the vignettes. Patients were also asked for feedback regarding the breast cancer booklet and communication pamphlet to assess the accessibility of these


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materials and to determine if they provided information that patients perceived as useful during breast cancer treatment.
The exit survey questions about the feasibility and acceptability of the measures were especially important, as larger future controlled studies will need solid, informative measures to determine efficacy/effectiveness of a counseling intervention for Spanishspeaking breast cancer patients. First, patients were asked to provide their opinion about whether or not the measures captured the important aspects of their breast cancer treatment experience. The exit survey also provided useful feasibility information, as patients were asked if there were any confusing items or measures, or if they felt uncomfortable responding to any of the assessment questions.
As previously noted, Spanish-speaking breast cancer patients have significant psychosocial needs, yet often face significant barriers accessing treatment. This intervention attempted to ease the impact of some of those barriers by allowing a flexible combination of in-person and telephone counseling. During the exit survey, patients were asked if those considerations were beneficial to them and if they had any additional suggestions regarding how intervention delivery could be made even more feasible. Additionally, the exit survey gathered patient opinions about how feasible and acceptable it was for them to begin and end their participation in the intervention along their cancer care continuum.
One of the most important topics included in the exit survey was patient interest in the intervention. The current counseling program was designed to maximize patient acceptability and to be as useful as possible to Spanish-speaking breast cancer patients, taking into account the unique cultural and linguistic needs of this population. The exit


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survey was designed to allow patients to provide input on whether or not meeting with their counselor on the same day as breast clinic appointments reduced barriers and made it more feasible for them to attend their sessions or not. The exit survey was also designed to gather detailed information about patient motivations for attending counseling sessions, as well as what barriers prevented them from being able to do so.
The goal of the exit survey overall was to gather more detailed information regarding patients perspectives on all aspects of the feasibility and acceptability of the intervention to inform the development of other, larger programs for Spanish-speaking breast cancer patients.
Analysis
The evaluation of the feasibility and acceptability of the intervention addressed the programs content, psychoeducational materials, assessment measures, delivery of psychological services, and patient interest and ability to participate. To comprehensively assess these various domains, project records and direct input from patients were utilized to evaluate the program. Data from the pre- and post-intervention assessment instruments were also assessed. Results from both quantitative and qualitative analyses were compared to determine if results indicated similar conclusions or if the data sources contradicted each another.
Project Records
Project records provided information about the feasibility and acceptability of the intervention. In order to assess patient interest in the program and ability to participate in the intervention, initial participation rates of eligible women approached for the study and


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intervention retention rates were calculated. Reasons for non-participation in the study were documented.
Additionally, project records were used to provide information regarding the delivery of the intervention. Descriptive statistics (means, ranges, and standard deviations) were calculated in SPSS Version 22 for the total number of sessions that patients participated in, the number of live sessions attended, the number of telephone sessions completed, and the length of both live and telephone sessions. These indicators provided information regarding the feasibility and acceptability of each of the delivery methods (in-person and telephone), as well as the feasibility and acceptability of using a combination of both delivery methods. Greater use of a particular delivery method (or combination of delivery methods) indicated greater feasibility and acceptability of that method. Participant attendance rate was calculated from project records by considering the number of sessions patients attended compared to the total number of sessions scheduled. Participant attendance was considered an indicator of feasibility and acceptability, as it reflects both patients ability and desire to attend sessions. The previously described exit survey provided more detailed information regarding whether or not patients felt the intervention was acceptable to them, as well as whether or not it was feasible for them to participate. Finally, project records revealed how many intervention patients were able to complete all assessment measures independently compared to how many required the assistance of the therapist to fill out the questionnaires. This information helped determine how practical the measures were when used with Spanish-speaking breast cancer patients, and if the use of these measures would be feasible in other intervention studies with a similar target population.


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Baseline and Post-Intervention Measures
Assessment instruments. All patients were administered a socio-demographic questionnaire before the intervention. Descriptive statistics, including means, ranges, standard deviations, frequencies, and percentages, were calculated as relevant to better understand the patient participant sample in terms of general demographic information, cancer diagnosis and course of treatment, and level of acculturation. All descriptive statistics were calculated using SPSS Version 22.
Patients were also asked to complete the FACT-B, FACIT-SP, BSI-18, PEPPI, and CSE Scale at baseline and post-intervention. Descriptive statistics, including means, range, and standard deviations were calculated in SPSS Version 22 for each assessment instrument at baseline and post-intervention. A Wilcoxon Signed-Ranks Test was conducted to assess differences between baseline and post-intervention scores for each assessment instrument. This statistical test was chosen because it is a nonparametric test and does not assume normality. Formal significance testing to assess for pre- and postintervention differences was not conducted due to the limited sample size and lack of statistical power. P values and effect sizes are reported. The present analysis was primarily designed to identify major outcomes for further testing in future randomized clinical trials.
Intervention exit survey. All exit surveys were conducted by a bilingual female patient navigator rather than by the study therapists. These interviews were audio recorded for later transcription, translation, and analysis. Exit surveys were transcribed and translated by a bilingual, trained undergraduate research assistant; each transcript was independently double-checked for accuracy by another bilingual, trained graduate


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research assistant. Ethnographic content analysis (Altheide, 1987) was used to extract important themes from the translated exit survey transcripts. Ethnographic content analysis is a reflexive process that allows themes to emerge during the data analysis process (Altheide, 1987). One of the primary benefits of using this reflexive approach of continual discovery is that key themes are less likely to be overlooked than when using other forms of analysis, such as quantitative content analysis (Altheide, 1987). Krippendorff s (2004) analytic framework was used to guide the process of ethnographic content analysis in order to capture the important values, beliefs, attitudes, and emotions that patients express in their exit surveys. Although Krippendorff s (2004) methodology is generally used for quantitative content analysis, he noted, quantification is not a requirement for obtaining valid answers to a research question (p. 87).
The analytic steps, as specified by Krippendorff (2004) consist of (1) unitizing or categorizing, (2) recording or coding, (3) reducing, (4) inferring, and (5) narrating. In the first step of unitizing or categorizing, the researchers task was to distinguish meaningful segments of text and assign these segments to common themes. The researchers carefully attended to the context in which text segments appear in the transcripts in order to make inferences about the meaning of messages and to identify key themes. The second step of analysis involved the development of a coding scheme, which allowed for examination of the text for very specific data. To ensure that the extracted themes were relevant to the topic of investigation, the coding scheme was directly guided by the research questions. Once the coding scheme was developed, the themes were then reduced into broader categories, making the data more organized and manageable. The researchers then made inferences about the meaning of the data within


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the context of the studys research questions. Finally, the researchers narrated the data, meaning that they presented the results in a manner that is understandable to others. The final results are relevant themes, shared in a narrative format, that address the research questions. The Principal Investigator has extensive experience in content analysis and trained and supervised three graduate research assistants and two undergraduate research assistants to conduct the analysis following the steps outlined above.
Each research assistant began data analysis by independently reviewing the same interview transcript, noting meaningful segments of text, and creating short labels to capture the meaning of text segments {unitizing and sampling the data). Research assistants then met as a team to discuss the meaningful segments of texts and labels {codes) that were created to summarize their meaning. Based on the questions posed in the patient exit survey, the codes were then organized and reduced into broader categories. The research team worked on this process until a consensus was reached regarding the labeling and categorization of the data for the first interview transcript. The research team members then split into smaller groups to analyze the remaining transcripts. First, transcripts were independently unitized, sampled, coded, and reduced. Once these steps were completed, group members compared their analyses and worked towards a consensus. The entire research team then met as a whole in order to discuss new codes, answer questions, or resolve discrepancies that occurred between research assistants.
Each remaining exit survey transcript was analyzed using the process detailed above.
The final two steps of data analysis, inferring and narrating, were completed in groups after each transcript was categorized, sampled, coded, and reduced. Group members collaborated to create sentences that explain the codes; these sentences elucidated the


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underlying themes identified in the text. These brief explanations were discussed among the entire research team; again, any questions or discrepancies among the research assistants were addressed. Once the entire team reached consensus about the meaning of each of the identified themes, the research assistant groups embarked on the final stage of analysis: narration. In this step, the research assistants elaborated on each theme, providing a detailed explanation of each individual theme. To best illustrate the final themes, relevant patient quotes were incorporated into the final narration of results.


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CHAPTER III RESULTS Participants
Nine Spanish-speaking Latina breast cancer patients participated in this study. Participant ages ranged from 39 to 74 years and approximately half of the women in this study were in their 40s (M = 47.33, SD = 11.09). Participant ages were as follows: 39, 40, 40, 41, 44, 45, 50, 53, and 74. Seven out of nine of the women in the sample were unemployed. Six of the patients relied on the Colorado Indigent Care Program (CICP), which is not a form of insurance, but rather a program that provides discounted health care services to low-income patients. One patient reported having Medicaid coverage, and two others reported other sources of health insurance. Two women reported household incomes of less than $1,000 per month, five women reported household incomes of $1,001 to $2,000, and two women reported household incomes of $2,001 to $3,000. Six of the women in this study were married, although one woman was never married, one was divorced, and one was widowed. Overall, these women had lived in the United States between 7 and 27 years (M= 14.67, SD = 6.46) and all reported receiving their education in Latin America. Eight out of the nine patients were from Mexico, although one reported that she was originally from Guatemala. Overall, the patients in this study had a low level of educational attainment, as seven out of the nine women reached grade-school level education. One participant reported that she never received any formal education, and another reported a high-school level education.
Patients diagnosed with all stages of breast cancer were represented in this study, although medical records indicated that the majority of women were diagnosed in stage II


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(3 women) or stage III (3 women). One patient was diagnosed at stage 0, one patient at stage 1, and one patient at stage IV. Interestingly, five out of nine of the patients in the study incorrectly reported to their therapist their cancer stage at diagnosis when compared to the stage at diagnosis stated in their medical records. In terms of treatments received, all patients who received treatment at Denver Health had surgery and radiation, and most also had chemotherapy (seven out of nine women) and biological therapy (seven out of nine women). Treatment data was unavailable for the patient who was diagnosed with breast cancer at Denver Health and transferred to another institution for her treatment.
The women who participated in this study were overall more acculturated to their culture of origin than to the dominant U.S. culture. All of the women who participated in the study preferred to speak Spanish. Five out of nine of the women who participated in this study spoke only Spanish, whereas the remaining four women reported speaking Spanish better than English. Similarly, six out of nine reported that they could read only Spanish; three reported that they could read Spanish better than English. Eight out of nine women reported spending all of their early life in Latin America, although one woman noted that she spent about an equal amount of time in Latin America and the United States while growing up. Four out of nine women reported that their friends were almost all of Hispanic origin and four women said that their friends were mostly of Hispanic origin. One woman described having about an equal number of Hispanic and non-Hispanic friends. Six out of nine of the women in the study reported being very proud and three women reported being proud of their Hispanic origins.


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Summary of Intervention
Intervention Delivery
The original intervention protocol called for five to eight weekly sessions, lasting from 30 minutes to one hour. The intervention sessions were designed to take place the same day as breast clinic appointments, and a combination delivery method of in-person and telephone sessions was specified. Overall, the intervention was delivered as intended with two modifications. First, sessions did not always occur on a weekly basis for a few key reasons. Patients often missed appointments, resulting in gaps in treatment. As discussed under Research Question 4 below, the overall attendance rate for in-person sessions as 86.4%. Furthermore, intervention sessions were sometimes spaced further apart to match a patients course of breast cancer treatment. For example, five to eight weekly sessions would not have been sufficient to follow a patient through a lengthy course of surgery, chemotherapy, and radiation therapy. When this was the case, therapists and patients tended to meet around the time of transitions in treatment and check in with brief telephone calls in between these transitions to assess whether or not additional in-person sessions were necessary.
The second modification of the intervention delivery was the combination delivery method. Overall, the telephone sessions were often not feasible for several reasons, ranging from patients not having reliable access to telephones, telephone connection problems, patients being distracted while on the phone, and a lack of interpersonal connection. Due to these issues, two-thirds (six out of nine) of the women in the intervention did not receive any telephone sessions. Three patients had at least one telephone session, but overall, the intervention was delivered in-person. Despite the


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issues with telephone sessions, brief telephone check-in calls were useful for connecting with patients between treatments and during off weeks, when patients could be reached in this manner.
Intervention Topics
The original intervention protocol called for the inclusion of several required topics (i.e., introduction, health education, communication, coping with treatment side effects, culture/spirituality, self-care) as well as optional discussions about how to cope with distress (i.e., depression and anxiety) and body image concerns. Although the initial intervention design called for a focus on one topic per week, this model was generally not feasible in practice. Patients often discussed several topics within one session, and topics were often revisited throughout the course of the intervention as appropriate and necessary. For example, coping with treatment side effects and communication with providers were often revisited at each transition from one type of treatment to another. Discussions about spirituality and culture did not take place during just one therapy session; rather, these topics in particular were infused with nearly every other discussion topic addressed in the intervention. Spirituality and culture were often emphasized in discussions about coping with distress and communication in particular. Additionally, patients often wanted to discuss other stressors aside from their cancer experiences with their therapists, such as family and work concerns. These concerns were generally addressed as they pertained to the patients ability to manage their overall levels of distress, maintain appropriate self-care, and adhere to cancer treatment. Furthermore, it was not always feasible to address health education in the introductory session due to time constraints. Oftentimes, an hour session was not enough time to adequately orient


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patients to the intervention and also accomplish other tasks such as administering the socio-demographic questionnaire, other pre-intervention measures, gathering basic intake information, and discussing health education matters. Table 1 illustrates the order in which patients completed the intervention topics. This table captures only the major topic(s) discussed during each session; patients often discussed other topics in the same sessions.


Table 1
Overview of the Intervention Topics that Study Participants Received in Each Session
Patient # Session 1 Session 2 Session 3 Session 4 Session 3 Session 6 Session 7 Session 8 Session 9
Body hnase
1 Introduction Depression Anxiety Depression Communication Side Effects Communication
2 Introduction Health Ed Communication Side Effects* Culture Spirituality* Self-Care* Termination
Communication
3 Introduction Communication Depression Anxiety Culture Spirituality' Depression Anxiety Communication Spirituality Self-Care Termination
Anxiety.1'
4 Introduction Communication Health Ed Side Effects Anxiety* Culture Spirituality* Anxiety Depression* Communication* Self-Care Termination
5 Introduction Health Ed Communication Side Effects Depression* Culture Spirituality Anxiety Side Effects Depression Self-Care Termination
6 Introduction Health Ed Communication Health Ed Health Ed Culture Spirituality Communication
Side Effects
7 Introduction Communication Communication Health Ed Anxiety Culture Spirituality Self-Care Termination
8 Introduction Health Ed Anxiety Communication Health Ed Body Image Culture Spirituality Side Effects Communication Spirituality
9 Introduction Health Ed Communication Side Effects Culture' Spirituality Self-Care Termination
Note. denotes telephone session.
On


Running head: ACCEPTABILITY AND FEASIBILITY OF AYUDA
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Psychoeducational Materials
Although the original intervention protocol included having patients reflect on vignettes in preparation for the next weeks therapy topic, not all women received vignettes for each of their sessions. Project records and case notes documented that gaps of time during therapy often occurred for several reasons, such as frequent patient cancellations, no-shows, and waiting for patients to finish one medical treatment and begin another. In addition to lengthy gaps in treatment, it was also often difficult to anticipate patients needs for the next session amidst sudden changes in medical treatments (e.g., starting chemotherapy) and health status and the emergence of other unexpected life events. To best accommodate patient needs, it was necessary for the therapists to remain flexible to patient needs as those arose. Thus, it was oftentimes not feasible to provide patients with a vignette on a specific topic to reflect upon at home and then discuss at the next session, especially as time between sessions increased. Another important obstacle to implementing the vignettes was patients low literacy; therefore, reading the vignettes as homework was not feasible without assistance for some patients. Although the vignettes were hypothesized to help the women begin to discuss their own thoughts and feelings in a culturally relevant manner, all of the women who participated in the intervention demonstrated a willingness to openly discuss their own experiences without needing to begin with the vignettes. Due to the various barriers to using the vignettes, they were only used as necessary and relevant, sometimes as homework and occasionally in session. Not all patients received vignettes due to their lack of feasibility
in the intervention.


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The use of the other psychoeducational materials during the intervention was also modified from the original intervention protocol. Although the booklet Understanding Breast Cancer (Lo que debe saber sobre el cancer del send) (Krames Patient Education, 2011) was initially intended for use only in the introductory session to cover basic cancer and health education topics, therapists and patients referred back to this booklet several times throughout the intervention to help review and explain various topics that became relevant throughout breast cancer treatment. In addition to basic health education, this booklet was often used during discussions of several different intervention topics. For example, the booklet provided a useful review of the various treatments that patients would undergo, and also provided information about the treatment side effects that they might experience. This information was especially useful during discussions about coping with side effects as well as communication with providers, as the materials had a tendency to elicit additional patient questions for providers.
Similarly, the pamphlet Questions to Ask Your Doctor About Breast Cancer (Preguntas para el medico acerca del cancer de send) (Susan G. Komen for the Cure, 2008) was also used throughout the intervention. It was initially intended for use during a single session focused on communication to help patients devise effective strategies for improved patient-provider communication, such as writing down questions before appointments and recording provider responses to help patients keep track of information. However, because the pamphlet contained separate cards for each topic (e.g., surgery, chemotherapy, radiation therapy), patients and their therapists tended to use individual cards as they became relevant throughout the intervention. For example, a patient may have used different cards from this pamphlet three times during the course of the


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intervention, as they related to her specific course of treatment. The cards were useful as a way for patients to assess their own knowledge about the given topic, as they could use them to assess their understanding with the suggested patient questions for providers. This exercise often elucidated gaps in knowledge and also sparked new patient questions. As initially planned, the cards in this pamphlet were also used as a strategy to help patients remember their questions and record provider responses during appointments. Table 2 illustrates the key changes that were made to the original intervention protocol.


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Table 2
Modifications to Original Intervention Protocol
Intervention domain Original protocol Modifications
Intervention delivery Five to eight weekly sessions. Sessions ~ 30 min. to 1 hr. Sessions same day as breast clinic. Combination in-person and telephone sessions. Sessions did not always occur weekly. Telephone sessions were often not feasible; majority of intervention was conducted in-person.
Intervention topics Required and optional topics. One major topic of discussion per week. Multiple topics discussed in each week. Spirituality and culture were generally infused throughout intervention.
Same topics revisited during course of intervention.
Inclusion of additional family- and work-related stressors in discussions (as they affected coping and cancer treatment).
Psychoeduc ational materials Vignettes as homework to introduce session topics. B ookl et: Understanding Breast Cancer provided in health education session. Pamphlet: Questions to Ask Your Doctor provided in communication session. Often not enough time to discuss health education in introductory session. Vignettes often not feasible; only some patients received vignettes. Booklet and pamphlet both used throughout the course of the intervention as opposed to during single sessions.


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Research Questions Findings
Research Question 1
How did Spanish-speaking Latina breast cancer patients perceive the content of the AYUDA intervention? Anxiety, body image, communication, coping with side effects, and family were noted as most helpful topics. As documented in therapist comments and case notes, patients frequently chose to discuss cultural (e.g., importance of family) and spiritual topics during their sessions. None of the women identified any topics that were missing or that were not useful to them, although many patients wanted to address life events and stressors besides breast cancer during their sessions. The majority of patients agreed that talking to the therapist in-person (versus over the phone) was the most useful method utilized in the intervention, and all patients reported good rapport with their therapists. Specific relaxation exercises (e.g., deep breathing and guided imagery) and psychoeducational materials were also noted to be particularly helpful.
Most helpful topics. What did these patients identify as the most helpful topics of the intervention? Overall, the women in this study reported a high degree satisfaction with all of the topics included in the intervention. Several women reported that all intervention topics were helpful to them. For example, one participant remarked, Oh yes, there were very important topics. I liked them all, all the themes. Another woman reported, I think they were all useful.
Communication was specifically described as one of the most helpful topics among the intervention participants. One woman stated, Communication helped me a lot. The intervention therapists helped several women disclose their cancer diagnosis to their immediate and extended family members. Some women, especially those with


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young children, initially struggled with the decision of whether or not they should share their breast cancer diagnosis with their children, and if so, how they should tell them.
The intervention therapists helped women explore these decisions and formulate strategies to best communicate news about their cancer diagnosis to their loved ones. Furthermore, although most women did not initially report communication difficulties aside from language barriers with their providers, several of them recognized significant gaps in understanding their cancer stage, course of treatment, and provider recommendations during their counseling sessions. These gaps in knowledge helped women identify patient-provider communication as a priority. For example, five of nine women incorrectly reported their cancer stage when they began the intervention. One woman in particular told her therapist that she was diagnosed with stage 0 breast cancer, but that she was supposed to undergo chemotherapy and radiation. After some brief psychoeducation about cancer staging and typical treatments, the patient and therapist worked together to identify questions she wanted to ask her medical team. When the patient returned to her next counseling session, she reported that she talked with her doctor and learned that her cancer was stage III.
Several patients also identified anxiety as one of the most beneficial topics in the intervention. For example, when asked about the most helpful topics, one patient replied, Well, the anxiety and nervousness because it showed me how to, how do you say it?
.. .Manage it, yes. Deep breathing and guided imagery were commonly used techniques among the patients in the intervention. Guided imagery was especially useful for one woman, as she explained utilizing this technique to relax while she received her chemotherapy treatments. Therapists did not provide already existing guided imagery


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scripts for patients; rather, they helped the patients create their own scenes, rich with detail from all senses. Some women chose to include important personal and cultural aspects to their guided imagery scenes. For example, one woman chose to imagine an area in Mexico where she spent much of her childhood. Another woman incorporated the importance of family into her image; she chose to focus on a playground where she used to take her children to play when they were younger. Therapists also encouraged patients to explore and practice additional methods of relaxation. Many women explained that spiritual activities, such as reading the Bible, praying, or attending church services had a calming effect. Another woman explained that she felt less anxious and more hopeful after reading passages in a book containing poems and inspirational statements. In session, she recommended that other Latina breast cancer patients also read similar material to help assuage anxiety and instill hope. Some cognitive behavioral techniques, such as helping patients reframe distressing thoughts and challenge catastrophic thinking, were also beneficial for patients in the intervention.
Body image was also reported to be one of the most helpful topics; patients explained that talking about changes or loss of breasts as well as hair loss was important. One woman illustrated this idea by saying, They helped me in everything. That I was not the only person that was going through this. And that a breast did not make a woman. Specifically, helping women explore what it meant to be a Latina woman and what she considered her most important roles in life seemed particularly useful in helping women cope with physical changes. Several women emphasized familial roles, especially the importance of making sure to adhere to treatment recommendations to maximize their chances of surviving cancer to be able to raise their children. Oftentimes, body image


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concerns were discussed alongside communication, as some women chose to discuss their concerns with their spouses or loved ones. When women disclosed their body image concerns to their spouses, they overwhelmingly received positive, supportive comments that emphasized that the womens lives were much more important than their physical characteristics. Additionally, many women explained how wearing a wig or a prosthetic breast helped them combat body image issues. The patient navigator assisted many of these women in attaining wigs and prostheses, and the patients often expressed great appreciation for this assistance. Similarly, one women described how choosing to dress fashionably, even in the midst of cancer treatment, made her feel better emotionally because she felt more like her usual self. Overall, the majority of patients found it helpful to work with their therapists to find strategies to cope with body image concerns.
A number of women also reported that discussing coping with side effects was particularly useful. One woman explained that it was helpful for her to learn about how I was going to suffer and about the chemotherapies. Learning about breast cancer, particularly its treatments, was also reported to be a key topic of the intervention. These two topics often went hand-in-hand. Most women in the intervention had limited knowledge about treatment modalities and often held misconceptions about the process of treatment. Therapists often revisited the booklet Understanding Breast Cancer (Krames Patient Education, 2011) across several sessions with patients to explain topics ranging from cancer staging to surgery to chemotherapy and radiation. Patients reported feeling more prepared and less anxious for their treatments once they understood them better. Patients also seemed less likely to experience high levels of anxiety once they understood the common side effects of treatment. For example, one woman developed a


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seroma following her surgery. She was able to calmly discuss this issue with her therapist, referring to the page in the booklet that they had previously reviewed together. The topic of treatment side effects was also often discussed alongside communication strategies. For example, some women maintained employment during their breast cancer treatments and worked with their therapists on strategies to communicate their health status and negotiate alternative work tasks with their employers.
Interestingly, none of the women explicitly stated that culture and spirituality were among the most helpful topics when queried during their exit interviews. Furthermore, during the intervention, several women were asked to reflect on what it meant to be a Latina with breast cancer. None of them were able to identify how being Latina impacted their experience, perhaps due to the fact that the participants generally highly identified with their culture of origin and had low levels of acculturation to the dominant U.S. culture, making it difficult for them to explicitly identify cultural influences.
It is important to note that when asked which topic she liked the most during her exit interview, one woman replied, the family, which is a culturally relevant topic. As part of the culturally sensitive intervention, family was often discussed throughout the therapy sessions and was not limited to one culture and spirituality module. Family was discussed in several different contexts and within several intervention topics. For example, familial conflicts were sometimes cited as stressors, whereas other times, family was described as an invaluable source of support throughout the difficult experience of cancer diagnosis and treatment. Many women emphasized the importance of family in their lives, and also explored how their cancer experiences affected their role within the


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family. For example, those with small children especially reflected on how adhering to treatment was a priority so they could be around to see their children grow up. The topics related to family were frequently covered during communication, body image, and depression/anxiety discussions in particular.
Additionally, most patients spoke at length about their faith during several of their therapy appointments. As noted above, faith-based activities were some of the most commonly practiced relaxation methods among the women in the study. Some women reported a deepened sense of faith and stronger relationship with God as a benefit of going through the difficult experience of cancer. For example, one woman explained how she always considered herself to be a Catholic based on her familys values, but that she never felt a close relationship with God before her cancer diagnosis. She said that through more frequent prayer and church services, she now feels that God is there for her to help her through lifes difficulties. Another woman explained that she had faith that God would help heal her, as long as she participated in her treatment plan and did her part to overcome the disease. Overall, case notes and project records clearly indicate that discussions about culturally relevant topics like family and spirituality were key topics that most women chose to revisit throughout the course of the intervention.
Participants were also asked to rate the usefulness of each intervention topic during their exit interviews, using a 1 through 5 Likert scale (1 = not at all useful, 3 = somewhat useful, 5 = very useful). Notably, most women were able to provide adequate responses for the majority of topics queried; however, some participants required clarification from the interviewer to use the Likert ratings. The missing data in this


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section generally reflects instances when participant responses were not able to be determined according to the Likert scale options.
Regarding the topic of breast cancer and its treatment, seven of nine women described it as very useful (5) whereas one woman rated it as somewhat useful (3). One woman did not provide a clear response when asked about that topic. Six of the nine women also rated communication as a very useful (5) topic; an additional two women rated it as useful (4). Again, one woman did not provide an adequate Likert scale response when queried about the usefulness of communication as an intervention topic. Four women rated coping with treatment side effects as very useful (5), two women rated this topic as useful (4), and one woman reported that it was somewhat useful (3). Two of nine women did not provide a clear rating for this topic. Six of nine women rated the culture and spirituality topics as very useful (5); two rated it as useful (4), and one rated it as somewhat useful (3). Seven of nine also agreed that discussing self-care topics, such as diet, exercise, and making time for oneself was very useful (5). One woman rated the self-care topic as useful (4), and another rated it as somewhat useful (3). Regarding depression and anxiety, five women reported that these topics were very useful (5), three reported that they were useful (4), and one rated them as somewhat useful (3). Lastly, six of nine women rated body image as a very useful (5) topic to discuss. One woman rated it as useful (4) and another woman rated it as somewhat useful (4). One woman also rated body image as not useful (2).
Overall, women rated the topics of breast cancer and its treatment, coping with treatment side effects, culture and spirituality, self-care, and depression and anxiety as somewhat useful (3) to very useful (5). Communication received the most favorable


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reviews; all eight patients who rated this topic said that it was useful (4) or very useful (5). Body image generally received somewhat useful (3) to very useful (5) ratings, although one woman rated it as not useful (2). These results can be found on the following page in Table 3.


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Table 3
Patient Ratings of How Useful Intervention Topics Were to Them
Intervention topic Patient ratings # of patients (n = 9)
Learning about breast cancer Somewhat useful 1
and its treatment Very useful 7
Missing response 1
Communication skills with the Useful 2
doctor or family Very useful 6
Missing response 1
Coping with side effects of Somewhat useful 1
treatment Useful 2
Very useful 4
Missing response 2
Culture and spirituality Somewhat useful 1
Useful 2
Very useful 6
Self-care, including diet, Somewhat useful 1
exercise, making time for Useful 1
oneself Very useful 7
Depression and anxiety Somewhat useful 1
Useful 3
Very useful 5
Body image Not useful 1
Somewhat useful 1
Useful 1
Very useful 6
Least helpful topics. What did these patients identify as the least helpful topics of the intervention? When asked about which intervention topics they perceived as the least helpful, none of the women identified specific topics. Several of the women clarified that there were not any topics that were not useful. For example, when asked Were there topics that you felt were not useful in covering? one participant explained, No, everything was excellent for me. Another woman responded, No, everything was really well. Yet another patient echoed this sentiment, No everything was useful.


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They explained it well. As described above, the patients Likert ratings of all topics were generally positive, with all topics except for body image rated as at least somewhat useful (3) by all women. Body image was the only topic to receive a not useful (2) rating by one woman. All of the other participants gave body image a positive rating and several described it as one of the most helpful topics in the intervention. The therapists agreed that there were not any topics that were not useful in the intervention. However, the therapists identified that culture and spirituality were not as useful to discuss as a specific module topic, but rather, were most helpful when infused throughout the entire intervention.
Missing topics. What topics, that were not included in the intervention, did these patients identify would have been helpful to discuss during breast cancer treatment?
When asked directly about additional topics that they would have liked covered in the intervention, none of the participants suggested additional topics to include. One patient specifically stated, Everything to me was covered. Although the patients did not provide suggestions about additional topics to include, case notes and project records indicated that many patients wanted to discuss other life events and stressors besides breast cancer in their sessions. For example, one patient wanted to discuss parenting strategies for her special needs child, another wanted to talk about her sons incarceration, and yet another about her impending divorce and financial difficulties. Still, several more women wanted to talk about other family and work matters. Many of the women in the study experienced several significant stressors in addition to their breast cancer diagnosis and treatment, and sometimes they reported more distress related to these other stressors than to their breast cancer. In this intervention, therapists generally attempted to


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address the issues that were not specifically about breast cancer as they affected the patients overall coping skills and ability to adhere to breast cancer treatment.
Most helpful methods. What did these patients identify were the most helpful techniques (or methods) used during therapy? When asked about the most helpful methods in therapy, participants overwhelmingly reported that talking with the therapist was the most beneficial aspect of the intervention. For example, one woman explained that it was helpful, .. .to talk to the girl, the psychologist. She gave me a lot of good advice. They were very useful. Another patient stated, It helped me a lot to talk to that girl because maybe there Id tell her things that... like, it does help to talk. Notably, all of the women interviewed described a positive rapport with their therapists. When asked about feeling comfortable with her therapist, one patient replied, For me, it was the best. Everything was really good. Another woman elaborated, ... When I would go see her, she, I would tell her everything and she understood me and Id leave feeling really good. All of the women in the study seemed willing to openly discuss their own experiences through breast cancer diagnosis and treatment and many of them repeatedly expressed gratitude for having a therapist to listen to their concerns and support them during the process of breast cancer treatment.
Some patients also described relaxation techniques, like guided imagery, as particularly helpful techniques in the intervention. One woman explained, She taught me how to breathe, to inhale, to exhale out... she would say go to the park, remember your kids when they were little... and all of that helped me. These women reported using deep breathing and guided imagery techniques in their daily lives, and also during particularly stressful times throughout treatment, such as the patient described above who


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used guided imagery while receiving chemotherapy. Although only one patient reported that the pamphlets were the most useful aspect of the intervention for her, therapists and patients often referred to both the Questions to Ask Your Doctor About Breast Cancer pamphlet (Susan G. Komen for the Cure, 2008) and Understanding Breast Cancer (Krames Patient Education, 2011) booklet throughout the intervention. These materials were used to address several topics that often resurfaced during the intervention, including general psychoeducation about breast cancer and its treatment, coping with side effects, and communication with providers. Another woman noted how the vignettes were particularly helpful; she stated, All the stories of how to deal, try to imagine being in other places. The helpfulness of the psychoeducational materials provided in the intervention is discussed in detail below.
Research Question 2
How did Spanish-speaking Latina breast cancer patients perceive the psycho-educational materials provided in the AYUDA intervention? The use of vignettes in the intervention was not always feasible. Overall, the use of vignettes as homework as initially planned was not feasible due to changing patient needs, low literacy levels, and patients forgetting to read and reflect on them as homework. Cancelled appointments and gaps in treatment also contributed to difficulties using the vignettes as originally intended. However, when patients did read and reflect on the vignettes, their reflections tended to be thoughtful and personalized responses to the stories. Some patients received several vignettes, whereas others did not receive any. Most of the time when the vignettes were used, they were provided as homework before the next session, although they were occasionally introduced at the beginning of the session to help introduce the session topic.


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The majority of women who received at least one of these brief stories indicated that the vignettes were helpful. Additionally, patients generally provided thoughtful responses to the vignette reflection questions. Most of the women described feeling like they could relate to the vignette characters, especially those focusing on body image and anxiety. Only one woman indicated that she did not relate well to the stories. Some women reported that it was helpful to read the vignettes as homework between sessions, whereas others explained that they used the vignettes in session or did not read them at all. Many women reported that the psychoeducational materials (booklet and pamphlet) provided in the intervention were very helpful; only one woman stated that she did not review them due to impaired concentration. Instead of each being used in a single module, both of the psychoeducational materials were used on an ongoing, flexible basis throughout the course of the intervention.
Vignettes. According to these patients, how were the vignettes helpful to reflect on issues that commonly arise during breast cancer treatment? Several patients who received the vignettes reported that they were useful; for example, one woman said, I learned from every story and they were useful. Patients specifically noted that the vignettes for body image, communication, and coping with treatment side effects were helpful. Notably, none of the patients reported that the vignettes were not helpful.
During their exit interviews, patients did not specifically elaborate on how the vignettes were useful in reflecting on their breast cancer experiences.
Overall, patients were able to provide thoughtful and personalized responses after they read the vignettes provided to them during the intervention. In response to the body image vignette, one woman noted how the shock and grief that the vignette character


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experienced after her hair loss were similar to her own reactions. This vignette seemed to normalize the patients reactions to hair loss and provided a segue to discussing these emotions in depth with her therapist. A different patient who had not yet experienced hair loss also benefitted from reading the body image vignette focused on this topic. The vignette was a useful introduction to body image, and the patient proceeded to ask a series of questions and discuss her concerns about hair loss with her therapist. Yet another woman reflected about how it is important to communicate with ones spouse about body image issues so that he can empathize and treat her in a caring way. When reflecting on the communication vignette (which also contains some spiritual topics), one woman explained the importance of her faith in God, but also expanded on how her children were a major motivator for her to communicate with her providers and adhere to treatment recommendations to battle her illness. Overall, the vignettes provided an introduction to the various topics covered, helped normalize patients experiences, and helped patients reflect on their own breast cancer experiences.
Vignette characters. How much did these patients feel they could relate to the characters portrayed in the vignettes? Overall, the majority of patients who received the vignettes reported that they felt they could relate to the characters portrayed in them.
Some of the patients noted that the body image vignette was particularly relatable. For example, one patient explained,
Yes, I identified with... well it was like my life. Some pages that they showed me about some person that they chopped off her breast and that her husband did not want to hurt her, that moved me a lot. It moved me.


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When asked if she identified with the protagonists, another woman responded, Well, I think so. For example, like the chemotherapy and hair loss. I did not cry but the impressions I got were like if I were to be losing my hair..Another patient described her perceptions,
Rita, I think that was her name... where her hair had fallen out and the husband told his wife that he no longer wanted her because when she had to go to the restroom her hair would all fall out. I liked that one a lot.
Although most women felt they could identify with the vignette characters, one woman did not feel that the stories were relatable. She described that it was difficult to identify with the characters because they are different stories. Overall, the women in the intervention seemed to empathize with the vignette characters, and were also able to use the vignette stories to address questions and/or concerns in their own lives. As described above, several women felt a particularly strong connection to the character featured in the body image vignette. One woman asked her therapist if the vignette characters were real patients; this suggested that the vignette stories and characters were portrayed in a realistic manner that actual patients could relate to.
Vignettes as homework. How useful did these patients think it was to read the vignettes as homework before the next session? Some of the patients interviewed reported that the vignettes were helpful to reflect upon a given topic as homework before the next session. For example, when asked about the vignettes as homework, one patient replied, Well for me they were very useful. One learns a lot more things. One woman explained that she used the vignettes in session with her therapist instead of as homework, and another patient reported, I did not read them. Project records indicated that while


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some women read the vignettes and returned with their reflections, several others reported that they forgot to read the vignettes in between their sessions or that they had lost them.
Psychoeducational materials. In what ways were the psycho-educational booklets/pamphlets useful for learning more about how to deal with breast cancer? Several patients discussed the psychoeducational materials provided in the intervention; overall, patients reported that they were helpful. One woman illustrated this perspective when she said, Everything helped me. Also the books that I read... the books helped me. Another woman described these materials as very useful. As discussed above, some patients rated the psychoeducational materials they received (booklets/pamphlets) as the most useful aspect of the intervention. The patients were provided both with an Understanding Breast Cancer booklet (Krames Patient Education, 2011) and a Questions to Ask Your Doctor About Breast Cancer pamphlet (Susan G. Komen for the Cure, 2008), but they did not elaborate on which of these psychoeducational materials in particular was the most useful during their exit interviews. One patient described how she appreciated the illustrations in the booklet due to low literacy, Yes, it was very useful for me, everything that they gave me. When I cant read nor write, but when I had a chance I would look at it at least the figures when I could. Therapists often used the figures and illustrations in the booklet during session to explain important concepts such as cancer staging, surgery options, chemotherapy, and radiation therapy. Although the psychoeducational materials were reported to be helpful overall, one patient described difficulty using the psychoeducational materials due to impaired concentration, She gave me books, but sincerely, I never read them because I could not concentrate.


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Although the booklet was initially intended to be used during the first session to cover general cancer psychoeducation and then given to the patients to refer to at home, the booklet was used even more frequently during the therapy sessions with patients.
Due to the amount of time it typically took to go through the informed consent and introductory questionnaires, health education was not always addressed in the first session. Rather, therapists tended to use the booklet throughout the intervention as various topics became relevant to each patient. For example, discussions about cancer staging and surgery options often occurred at the beginning of the intervention, psychoeducation about chemotherapy and helping patients cope through its side effects tended to occur in the middle of the intervention, and a detailed review of radiation often occurred near the end of the intervention. The booklet was comprehensive and covered all of these topics and more, making it a useful resource to have on hand throughout the course of the intervention. Patients were provided with their own copy of the booklet to take home, and the therapists used extra copies to refer to throughout the course of the intervention.
The communication pamphlet was similarly used throughout the intervention as opposed to during one communication-focused session. The pamphlet contains several cards covering various aspects of cancer diagnosis and treatment. In the intervention, therapists and patients generally used the different cards as the various topics became relevant during different points along the patients cancer care journey. Some patients preferred to only be given the card covering the specific topic they were going to discuss with their medical providers, with any additional questions written on the card. Some patients said that they did not want to risk losing the entire pamphlet, and others said that


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they wanted the therapist to hold onto it so that future topic cards would be easily accessible when it became necessary to discuss them. In addition to helping patients remember their questions and their providers responses by having a written record, the cards in the pamphlet also proved useful during the intervention to assess patient understanding of breast cancer and its treatment. Many women initially failed to identify any questions for their providers. However, upon review of the questions listed in the pamphlet, therapists and patients were better able to assess gaps in knowledge and determine specific questions for medical providers. Overall, both psychoeducational materials tended to be used flexibly and repeatedly throughout the course of the intervention as opposed to discussed and distributed in specific module sessions. Research Question 3
Were the assessment instruments used in the AYUDA intervention appropriate for low-literacy Spanish-speaking Latina breast cancer patients? Project records were examined to determine how many of the women were able to individually complete the measures administered during the study. Several, but not all, of the women were able to complete their questionnaires without assistance. Women were also asked if they found any of the assessment items confusing or uncomfortable to answer. In addition to their exit interview responses, project records also provided further insight into which items the women in this study might have found difficult to understand or uncomfortable to answer. Several patients reported mild difficulty completing the measures, and records indicated that fill-in-the-blank Likert responses were challenging for at least one patient. Although patients denied that they were asked to respond to any uncomfortable items,


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records suggest that several women likely experienced some emotional discomfort responding to an item regarding sexual satisfaction.
Measure completion. How many patients were able to complete the measures individually? Overall, seven out of nine of the intervention patients were able to complete the sociodemographic questionnaire and pre- and post-intervention measures individually. Two of the patients were not sufficiently literate to read and complete the measures by themselves. These patients required assistance from their intervention therapist to complete the pre-intervention measures, and likely received assistance from their families or the patient navigator to complete the post-intervention measures. Due to the length of time required to complete the measures, the majority of women completed them outside of their therapy sessions.
Assessment relevance. How relevant did the patients feel that the assessments were to their experience of going through breast cancer treatment? A majority of patients agreed that the questionnaires administered at pre- and post-intervention captured their experiences of breast cancer diagnosis and treatment. One woman described that, The questionnaires that I filled out were like what was happening to me. To me they were the same. What happened to me was the responses that I had to fill out. A few women appeared to have difficulty understanding the question about whether or not the assessment items were relevant to their cancer experiences, as they did not clearly provide an answer to that question during their exit interviews. One of these patients, however, described the assessments as time-consuming, Well, like they would take a lot of time too. The assessments did take considerable time for patients to fill out, and thus, patients generally completed them outside of session whenever possible to maximize


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time spent discussing their experiences with the therapist. Notably, none of the patients reported that the questionnaires in this study were irrelevant or did not adequately capture their experiences of breast cancer diagnosis and treatment. Patients did not provide any additional spontaneous feedback about the questionnaires during the course of the intervention.
Confusing assessments. Were there any assessment measures or items that these patients could not understand or thought were confusing to them? Five out of nine participants denied experiencing any difficulty completing the measures in this study.
Four participants reported experiencing a little difficulty completing their questionnaires. For example, when asked if it was difficult for her to comprehend some of the questionnaires or specific items, one patient responded, Yes, but I dont remember which. But it was not much... one or two. The women who reported minor difficulty did not provide specific examples of items they perceived to be confusing. One patient explained how she asked for help with the measures, What was difficult for me to understand I would ask them. As previously mentioned, most women completed the measures outside of session, and it is unknown how many women asked other individuals, such as family members, for some degree of assistance. One woman did complete the majority of her questionnaires individually at home, and brought them back to session to complete. She had some vocabulary-related questions about a few of the items, but after the meaning of the words was explained, she was able to complete the items without further difficulty.
A review of project records indicated that one patient had difficulty understanding how to fill out the CSE when administered at pre-intervention. This


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measure features a Likert-scale response; however, each item requires the patient to fill in the blank with a number that corresponds to a Likert scale defined near the top of the measure. Instead of responding with the Likert scale numerical options, this patient wrote either yes or no in the blanks. The therapist reviewed this measure with the patient during their next session, and the patient verbally provided Likert scale numerical responses for each item. The patient did not demonstrate difficulty with any of the other Likert scale measures administered in this study, all of which required the participant to circle a number relating to each item instead of filling in the blank.
Uncomfortable assessments. Were there any assessment measures or items that these patients felt uncomfortable answering? When asked directly during their exit interview, all nine women denied perceiving any of the assessment items as uncomfortable. However, a careful review of individual measures conducted upon the completion of the intervention suggested that at least some of these women might have felt uncomfortable responding to a question on the FACT-B and FACIT-SP regarding sexual satisfaction. The sensitive item that appears on this questionnaire reads, I am satisfied with my sex life (Brady et al., 1997; Peterman et al., 2002). This questionnaire also offers the participants an option to skip that sensitive item by stating, Regardless of your current level of sexual activity, please answer the following question. If you prefer not to answer it, please mark this box and go to the next section (Brady et al., 1997; Peterman et al., 2002). Two patients marked this response on both their pre- and postintervention FACT-B and FACIT-SP questionnaire and therefore did not rate their sexual satisfaction. One of these women explained that this question was not applicable to her
because she was a widow.


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Two other patients skipped the sensitive question listed above on their preintervention FACT-B and FACIT-SP questionnaire, but provided a response on their post-intervention measure. For both of these women, the therapist was present at the administration of the pre-intervention measures, but not at the administration of the postintervention measures. One possible explanation for this pattern of responding to an item about sexual satisfaction is that they felt more comfortable completing this item in private. Another possible explanation is that the women may have felt more comfortable answering the sensitive item after they had built trust with their therapists during the course of the intervention. Several patients left questions blank across the various questionnaires distributed both before and after the intervention, but a close review of individual measures did not reveal any additional specific patterns or themes to account for these missing responses.
Research Question 4
Were Spanish-speaking Latina breast cancer patients interested and able to participate in the AYUDA intervention while in treatment? Overall, most of the Spanishspeaking breast cancer patients approached about the intervention were interested in participating. Furthermore, the majority of those who decided to participate remained in the intervention for several sessions. One of the primary patient motivations to attend therapy sessions was to speak with the therapist, although other motivations included increased knowledge, fear, and increased well-being. Several patients expanded on this topic and spontaneously described the benefits they received in this intervention.
Although many patients were interested in the intervention, many of them experienced barriers that interfered with their ability to attend appointments. Common barriers


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included lack of transportation, conflicting medical appointments, suffering from treatment side effects, and inclement weather. Despite frequent conflicts with medical appointments, patients expressed satisfaction with having the intervention on the same day as breast clinic. Some patients preferred to meet with their therapist before their medical appointments whereas others preferred to meet with their therapist afterwards.
Recruitment rate. What was the intervention recruitment rate? Overall, 13 women were approached by the patient navigator for participation in the intervention study and 11 of these women agreed to take part in the intervention. Therefore, the recruitment rate for this study was 84.62%. One woman reviewed the informed consent with her potential therapist before choosing not to participate. She declined to provide a reason for her non-participation when asked. Another woman expressed interest in the study when she was initially recruited by the patient navigator, but she was unable to be reached by phone to set up an appointment to review the informed consent and begin the intervention.
Retention rate. What was the intervention retention rate? Eleven women expressed interest in participating in this study and completed the informed consent. Two women did not return after their first appointment, which generally included the informed consent, a brief interview with the therapist, and some brief health education about breast cancer if time allowed. Nine out of eleven women (81.81%) remained in the study for at least two sessions of the intervention. Both women who dropped out of the study after the first session stated that they wanted to focus on their medical treatment for breast cancer. One of these women felt too busy with other medical appointments to also participate in the psychoeducational and psychosocial intervention, whereas the other


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woman described transportation barriers and a need to keep her appointments to a minimum.
Two out of the nine patients who remained in the study discontinued their participation in the intervention earlier than agreed upon by the patient and therapist.
One woman explained that she no longer needed the intervention because she felt she was doing well emotionally after having six in-person sessions and several telephone checkins. Another woman discontinued participation after having four in-person sessions; this was because she could not be contacted by phone to schedule additional appointments. Notably, in her exit interview, this patient explained that she wanted more time [with her therapist] and cited communication barriers as a reason for her discontinued participation in the study. When asked if it would have been better to have had more or less time with her therapist, this patient stated, If I had had a lot more time then well, maybe I would have learned a lot more. But, well, they never call me. And then I didnt call.
Attendance rate. What was the attendance rate (number of sessions scheduled/number of sessions attended)? Patients scheduled between three and eleven in-person sessions (M= 6.78, SD = 3.07) and attended between three and eight in-person sessions (M= 5.44, SD =1.51). The overall attendance rate for live sessions across all patients was 86.4%. Individual patient attendance rates varied; participants had between a 60% attendance rate and a 100% attendance rate for in-person sessions.
Patients scheduled between zero and five phone sessions (M= 1.44, SD = 1.74) and completed between zero and three phone sessions (M= .78, SD = 1.30). These telephone sessions do not include brief check-ins or phone calls for scheduling purposes.


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Four of the patients in this study did not schedule any phone sessions with their therapists; these patients conducted all of their sessions in-person. The remaining five patients scheduled between two and five phone sessions. The overall attendance rate for phone sessions across all patients who scheduled at least one phone session varied widely, ranging from 0% to 100%, with a mean phone attendance rate of 42%.
Motivations. According to these patients, what motivated them to attend the therapy appointments? Several patients described how the opportunity to speak with a therapist was their primary motivation for attending appointments. For example, when asked if there was something that motivated her to come back each week, one patient said, Yes, to talk about everything. Another patient elaborated on this idea and explained confidential disclosure as a motivation to attend her appointments, Yes, to talk openly, in confidence. Patients overwhelmingly reported good rapport with their therapists, and these ongoing, positive, supportive relationships also likely motivated the patients to attend their scheduled therapy sessions. Some of the women in the intervention did not have much social or emotional support outside of the intervention. For example, one woman had several small children and was in the process of getting a divorce during her cancer treatment. For other patients, the people in their support networks lived far away.
Increased knowledge was also noted as a motivation to attend therapy, Well one learns more things, Ive learned more things that I did not know... Specifically, many women began the intervention with limited knowledge or misinformation about their cancer stage, treatment recommendations, and what each type of cancer treatment entailed. Through a combination of psychoeducation and support for communicating with their medical professionals, most women in the intervention gained a much better


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understanding of their cancers and the treatments they underwent. Fear of cancer was also reported as a motivation to attend therapy; for example, one woman explained that it was Fear of my sickness! And how I felt! that prompted her to attend her appointments. Many patients reported anxiety related to having cancer, having to undergo difficult treatments, and the possibility of death. Anxiety was a common topic in therapy, and as already mentioned, some women thought it was the most helpful topic included in the intervention. Another woman summed up her motivation to attend therapy by describing positive well-being, Because I felt good. During the intervention, some patients also echoed this idea by thanking their therapists after sessions and telling them that they felt better after discussing their thoughts and feelings with them.
Several patients also spontaneously explained what they perceived were the benefits of intervention participation. One woman explained how the intervention provided encouragement, It helped me a lot and I dont know but it gave me a lot of encouragement, a lot of will to continue on and the treatment. That is what I liked a lot. A patient also explained how increased awareness of her breast cancer experience was a benefit of the intervention, Well look, the advantage was that she made me see how they were because, well, I couldnt, I was too isolated and I could not recognize. She made me see things how they were.
Increased self-reflection was also reported to be a benefit. This benefit is consistent with the interventions focus on having patients explore their thoughts, feelings, and behaviors during cancer diagnosis and treatment. Additionally, patients reported improved self-advocacy and increased knowledge as benefits of participating in the intervention. For example, one patient explained, Well, I learned a lot to not stay in


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doubt. There were a lot of questions that I had to ask. Increased self-advocacy was likely related to discussing communication with intervention patients, and increased knowledge was likely due to a combination of psychoeducation and enhanced communication with medical providers. Another patient explained how increased knowledge could help patients face the difficult experience of cancer, Well its not easy to assimilate. But it does help to know whats going on. This patient explained how the intervention built upon prior knowledge, Well, I had already read a lot about all of that and when they could explain, I would already know a lot of things but they also told me how. In the exit interview, one patient explained that having her therapist normalize her cancer experience was helpful. Finally, improved overall well-being was noted as a benefit of the intervention, Because they made me feel good. Another woman also indicated overall subjective improvement, I was doing real bad in everything. And well, they helped me a lot. To overcome this disease.
Missing sessions. What factors explained these patients missing sessions or discontinuing the program ? As noted above, the two patients who dropped out of the study after just the first session reported that they wanted to focus on their medical treatments for breast cancer. One of these women felt too busy with medical appointments and the other was concerned about transportation barriers. A review of project records revealed that several patients no-showed or cancelled their in-person therapy appointments due to experiencing side effects such as nausea and fatigue from their cancer treatments. Several patients also no-showed or had to cancel their therapy appointments due to conflicting medical appointments, and one patient also had frequent scheduling conflicts with her work schedule. Many patients relied on family members to


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transport them to and from their appointments, so family member work and personal schedules also sometimes interfered with the patients being able to attend therapy sessions. Another patient experienced transportation barriers and relied on the patient navigator to bring her to her therapy appointments. Given the patient navigators busy schedule, this was not always feasible.
Telephone communication was also a common barrier for patients participating in the intervention. There were several instances in which the therapists had difficulty contacting patients to conduct phone sessions and also to schedule in-person sessions. Specifically, the telephone communication barriers were because patients shared phones with other people, did not have a phone or had their phone disconnected, did not have voicemail set up, or provided incorrect phone numbers. During the intervention, another patient reported difficulty with phone sessions due to not having a quiet and private place to speak on the phone due to a chaotic household environment. All of the known reasons for appointment no-shows and cancellations are included above; there were a few no-shows and cancellations for which the reason was unknown.
When asked about barriers to participating in the intervention during their exit interviews, the women in this study cited several reasons that they were unable to attend their appointments, many of which were also documented in the project records. Consistent with project records, several patients specifically described a lack of reliable transportation as a key barrier to attending their appointments. For example, one patient said, I didnt [attend appointments] just because of transportation. Inclement weather was also noted as a contributing factor to transportation barriers and missing appointments. One woman explained, That it was very cold or that it was snowing and


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they could not bring me. This patient also recalled that treatment side effects interfered with her ability to attend her therapy appointments, Or I was sick from the reaction to my chemotherapy too. Another patient also explained how treatment side effects prevented her from attending sessions, Well for me the chemotherapy, I felt really tired. What I would do was drink like and try to eat more fruit and vegetables and lay down. Another woman described how conflicting medical appointments caused her to miss some therapy appointments, Well there were a few [appointments missed], but it was because I had appointments with the doctor. Although many of the patients interviewed described barriers to attending therapy appointments, there were a few women who denied any barriers to participating in the intervention. For example, one woman explained, I never missed [a session].
Same-day services. To what degree did meeting with a counselor on the same day as a medical appointment affect the ability of these patients to participate in the intervention? Overall, patients reported satisfaction with meeting with their therapists on the same day as their medical appointments. Several patients described how meeting with a therapist on the same day as their breast clinic medical appointments was appropriate or useful. For example, one woman described how That was the right time that I needed her and she was there with me. Another woman described having the intervention and medical appointments on the same day as convenient: It was easy.
One patient specifically described her preference to meet with a therapist before her medical appointments. She stated,


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It was useful to meet them before. Because I would know what I was going for.
One time like they were going to do what was going to happen. But she had
already told me and had explained to me. That helped me a lot.
Other patients reported that they preferred meeting with a therapist after their medical appointments on breast clinic day.
Interestingly, although medical appointments were sometimes reported as a barrier to attending therapy appointments, none of the women in this study recommended that therapy appointments be held on a separate days. For some women, especially those with transportation barriers, meeting on the same day as breast clinic likely enhanced their ability to participate in the intervention. When they had breast clinic appointments, it was helpful to discuss what had already happened in their appointment that day or review any questions or concerns about an upcoming appointment later in the day. For other women, meeting on the same day as breast clinic seemed more challenging, as the limited availability of therapy session times combined with trying to coordinate medical appointments, personal obligations, work schedules, and/or family member work schedules made for frequent scheduling conflicts. Although women often had appointments on breast clinic day, they also frequently had other medical appointments on other days of the week too. A flexible intervention, offered on both breast clinic and non-breast clinic days, may help the greatest number of women attend therapy sessions. Research Question 5
What feedback did the AYUDA participants have regarding the delivery of the AYUDA intervention? Patients reported a clear preference for in-person sessions over telephone sessions. They noted several advantages to in-person sessions, including a


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more personable relationship and better rapport with their therapist, ease of asking questions, anxiety reduction, and emotional support. No disadvantages to in-person sessions were identified. The only reported advantage to telephone sessions was convenience, which seemed to be outweighed by several disadvantages. These disadvantages included a lack of personal interaction, telephone connection problems, and distractions. Overall, the telephone sessions were often not feasible and therefore several women did not participate in telephone sessions. The women who received the combination delivery of in-person sessions and telephone sessions were generally satisfied with that method, when the combined delivery method was feasible. Most patients felt that their sessions were long enough, although some desired more time with their therapist in each session. Similarly, most patients felt that they had enough sessions, although some desired additional sessions. The majority of women reported that the timing of the introduction of the intervention soon after diagnosis was useful and/or appropriate. Some women reported that the timing of the intervention conclusion near the end of treatment was appropriate, whereas other women expressed a preference for a continued intervention.
In-person sessions. What did these patients identify as the benefits and drawbacks of in-person individual sessions? Patients identified several benefits of in-person individual sessions during their exit interviews. A major advantage noted by several women was that in-person individual sessions were more personable and allowed for better rapport between patient and therapist. For example, one woman explained, Well, one is seeing the person, the eyes, they are talking in front of one and like the conversation is more open. More personable. Another patient illustrated the idea of


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rapport, It is much better to be in person. Because one asks more questions and it is with more trust. Other patients elaborated on this idea and explained that it is easier to ask questions and engage in deeper conversation in person than over the phone. One patient said, I feel that it is better for the person because one can ask more questions. Emotional support and anxiety reduction were also noted as advantages of in-person individual sessions; for example, one woman said, It was good because I would talk to her and shed listen to me and when Id leave I felt very calm. Sometimes, anxiety reduction exercises such as deep breathing or guided imagery were conducted in session with the therapist present; this likely contributed to patients explaining that anxiety reduction was an advantage of in-person sessions.
Convenience was also described as an additional benefit to in-person sessions, Well they seemed more easy, more useful. For patients who had other medical appointments on breast clinic day, in-person sessions before or after their medical visit may have contributed to the convenience of talking with a therapist in person. None of the patients provided any disadvantages to in-person sessions in their exit interviews.
One patient even explained, There was no disadvantage. Everything was fine Despite the overwhelmingly positive reviews of in-person sessions, it is important to consider that several patients faced barriers to participating in the in-person sessions, as explained in detail above.
Telephone sessions. What did these patients identify as the benefits and drawbacks of telephone sessions? As described above, it was not always feasible to provide telephone sessions to patients in the intervention. Convenience was the only benefit patients identified regarding telephone sessions. One woman explained, Well it


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was fine because one feels sick and does not want to go out. And by phone a half hour is more convenient sometimes. Several drawbacks to telephone sessions were identified, including a lack of personal interaction, telephone connection problems, and distractions. For example, one patient explained, I feel that there always needs to be like seeing people. Another woman described her difficulties with phone sessions, Sometimes the phone call would not enter or the call would fail when they telephoned me but in person I would always come. Another patient illustrated how distraction can be a disadvantage to phone sessions, That I was distracted, like one is in their home doing things and is more distracted with children and everything. This woman multi-tasked while on the phone with her therapist. Her therapist noted that she seemed only partially engaged in their conversations, as she was completing household chores at the same time. These numerous drawbacks, especially telephone connection problems, were significant and ultimately led the intervention therapists to only conduct telephone sessions on an as-needed basis when patients were unable to attend in-person sessions.
Combination delivery method. How helpful did patients find the combination of in-person and over-the-phone sessions, and why? Due to the poor feasibility of providing phone sessions as previously noted, only three out of the nine patients in the intervention received a combination of in-person and phone sessions. Some of the women who did receive a combination of both delivery methods described it as useful; for example, one woman stated, It was very useful for me. The combination delivery method seemed most useful for women who experienced considerable treatment side effects that prevented them from leaving home to attend in-person sessions at the hospital. None of the participants who received the combination delivery method elaborated at length


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during the exit interviews about the benefits of being able to receive the intervention both in-person and over the phone.
Although not considered full telephone sessions, many patients received brief check-in phone calls in between their in-person sessions. These generally occurred when patients were in between medical treatments or waiting for the next phase of treatment to begin and not experiencing any significant psychological distress. These brief check-in calls were helpful to keep track of patient progress in treatment and understand any changes to their treatment plan or schedule. The informal check-in calls were also used to assess patient needs and to determine when the next in-person session should be scheduled. Although the same telephone connection problems affected these brief checkin calls, these informal calls were generally useful. Because patients were not receiving a full session in the check-in calls, the telephone connection problems were not as concerning, as an unsuccessful phone call did not mean missing a full session.
Delivery method preference. Overall, did these patients prefer individual or telephone sessions? Patients overwhelmingly reported that they preferred individual in-person sessions over telephone sessions. Interestingly, both patients who received the combination of both in-person and telephone sessions and those who only received in-person sessions agreed that in-person sessions were preferable. Patients tended to be straightforward in their preference for in-person sessions. For example, one woman stated, It is much better to be in person and another woman said, Yes, I preferred in person. None of the patients interviewed preferred telephone sessions over in-person sessions. Rapport likely factored into patients preference for individual sessions, as


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AYUDA: ACCEPTABILITY AND FEASIBILITY OF A PSYCHOEDUCATIONAL AND PSYCHOSOCIAL SUPPORT PROGRAM FOR SPANISH SPEAKING LATINAS WITH BREAST CANCER by AVA ROXANNE DRENNEN B.S., B.A., Colorado State University, 2009 M.A., University of Colorado Denver, 2012 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 Doctor of Philosophy Clinical Health Psychology 2015

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ii This thesis for the Doctor of Philosophy degree by Ava Roxanne Drennen has been approved for the Clinical Health Psychology Program by Kristin Kilbourn Chair Evelinn Borrayo Advisor Krista Ranby Sonia Okuyama Sasaki April 22, 2015

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iii Drennen, Ava Roxanne (Ph.D., Clinical Health Psychology) AYUDA: Acceptability and Feasibility of a Psychoeducational and Psychosocial Support Program for Spanish Speaking Latinas with Breast Cancer Thesis directed by Professor Evelinn Borrayo. ABSTRACT Latina breast cancer patients experience significantly poorer outcomes compared to non Latina s including lower treatment adherence and survival rates and higher levels of psychosocial distress. Because current program s are not designed to be culturally relevant and linguistically appropriate for Spanish speaking Latinas, in this study a psycho educational and psychosocial intervention was developed and implemented to assess its feasibility and acceptability for this pop ulation of patients undergoing breast cancer treatment. Nine Spanish speaking Latinas participated in the intervention for five to eight weeks. The intervention covered topics including health education, communication, coping with treatment side effects cultural beliefs spirituality, self care, body image, and coping with distress. Sessions were offered in person and via telephone. Patients received psychoeducational materials about breast cancer and communication and short vignettes that illustrated key topics to read before their sessions. Upon intervention completion patients participated in exit interviews about their experiences. Qualitative data was analyzed using ethnographic content analysis. P atients comp leted several assessments before and after participating in the intervention; these focused on topics like quality of life, patient provider communication, and spirituality. The feasibility of administering these instruments was assessed.

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iv P atients were int erested in and able to participate in the intervention. They were satisfied with the topics and strongly preferred in person sessions Psy choeducational materials were vital to the intervention, helping inspire conversations and promote understanding abo ut breast cancer, treatment, and communication with providers. The vignettes were not feasible and participants appeared open and able to discuss their experiences even without them. Most of the assessment s were feasible, although fewer or shorter instru ments might be more realistic for this population, and assessing religiosity instead of general spirituality may be more culturally appropriate for this population. Patients were satisfied that the program began soon after diagnosis. Some were satisfied with the program ending near the end of treatment, whereas others desired more sessions. There were no significant differences between pre and post intervention measures. This study provided valuable information about the feasibility and acceptability of the content and delivery of a comprehensive psychosocial and psychoeducational intervention for Latina breast cancer patients and can help guide the design and implementation of future programs for this population. The form and content of this abstract a re approved. I recommend its publication. Approved: Evelinn Borrayo

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v TABLE OF CONTENTS CHAPTER I. INTRODUCTION ................................ ................................ ............................. 1 Breast Cancer Disparities ................................ ................................ ................... 1 Psychological Interventions for Breast Cancer Patients ................................ .. 12 Summary ................................ ................................ ................................ .......... 18 Research Questions ................................ ................................ .......................... 19 II. METHODS ................................ ................................ ................................ ...... 2 3 Research Design ................................ ................................ ............................... 2 3 Participants ................................ ................................ ................................ ....... 2 5 Procedures ................................ ................................ ................................ ........ 2 6 Analysis ................................ ................................ ................................ ............ 4 5 III. RESULTS ................................ ................................ ................................ ........ 51 Participants ................................ ................................ ................................ ....... 51 Summary of Intervention ................................ ................................ ................. 53 Research Questions Findings ................................ ................................ ........... 61 Pre and Post Intervention Measures ................................ ............................... 98 IV. DISCUSSION ................................ ................................ ................................ 108 Recommendations for Future Interventions ................................ ................... 108 Limitations ................................ ................................ ................................ ..... 1 23 Contributions and Future Directions ................................ .............................. 1 25 REFERENCES ................................ ................................ ................................ ................ 12 9

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vi APPENDIX A. Patient Vignettes (English and Spanish) ................................ .............................. 140 B. Intervention Assessment Instruments ................................ ................................ .. 145

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1 CHAPTER I INTRODUCTION Breast Cancer Disparities The most common type of cancer among American women is breast cancer, accounting for over one quart er of cancer diagnoses. In 2015 approxim ately 231,840 American women are expected to be diagnosed with this disease (Am erican Cancer Society, ACS, 2015 ). Although breast cancer mortality rates have been declining over the past two decades, nearly 40, 290 women a re expected t o die from breast cancer in 2015 (ACS, 2015 ). The burden of breast cancer is not distributed equally among all American women. D espite the fact that Latinas have a lower incidence rate for breast cancer than women in other ethnic groups, they are more likely to experience poor treatment outcomes ( e.g., C olorado Cancer Coalition, C CC, 2011). This is especially concerning, as breast cancer is the most commonly diag nosed cancer and leading cause of cancer death among Latina women (ACS, 2012). Among Latinas, cancer is the number one cause of death overall, whereas cancer is the second leading cause of death for non Hispanic White wome n (ACS, 2012). Compared to their non Hispanic White peers, Latinas have a lower five year survival r ate for breast cancer (ACS, 2013 ; Colorado Cancer Coalition, CCC, 2011). Nationally, Latinas have an 87 % five year breast cancer survival rate, whereas no n Hispanic White women have an 8 8.6 % fi ve year survival rate (ACS, 2013 ). I n Colorado, Latinas have an 83% five year breast cancer survival rate, whereas the rate for non Hispanic White women is 89% (CCC, 2011). Information regarding disparities in survi val rates between Latinas and non Hispanic White women of all ages diagnosed at

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2 each stage of b reast cancer was not available. However, in a sample of elderly women (68 years of age or older), there were no statistically significant differences in mortality rates between Latinas and non Latina White women at any stage of breast cancer at diagnosis (0 through IV), when several factors such as screening utilization, biological measures, tumor char acteristics, treatment plan, and income and community variables were taken into account. survival disparity compared to non Hispanic White women. Research indicates that Lati nas are less likely to receive regular, recommended mammography screenings and are less likely to be diagnosed with more localized, earlier stage cancers (Curtis, Quale, Haggstrom, & Smith Bindman, 2008; Howe et al., 2006). However, later diagnosis and ad vanced cancer stage do not fully account for the breast cancer survival disparity of Latinas (Curtis et al., 2008; Shavers, Harlan, & Stevens, 2003). Latinas tend to experience longer delays during breast cancer treatment, even when cancer stage, insuranc e status, education level, and other important variables are accounted for (Fedewa et al., 2011). These patients are less likely to receive hormonal therapy than non Hispanic White women, despite no significant differences in tumor receptor status (Freedm an, Virgo, He, Pavluck, Winer, Ward, & Keating, 2011). Furthermore, Latina breast cancer patients are less likely to follow treatment recommendations, and inadequate adherence plays a large role in cancer progressi on and recurrence (CCC, 2011). Several factors have been posited to account for delays in treatment, lower likelihood of receiving hormonal therapy, and non adherence to treatment

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3 recommendations. First, Latina patients are more likely than non Hispanic White women to be affected by socioecono mic factors such as lack of insurance, low educational attainment, and lower incomes, which may contribute to barriers in recei ving timely, adequate treatment (Fedewa et al., 2011; Vona Davis & Rose, 2009). Physician biases, language barriers, and ineffec tive patient provider commun ication may als o contribute to these concerns (Fedewa et al., 2011 ; Freedman et al., 2011 ). Additional factors such as patient trust in their providers and the healthcare system as a whole as well as the difficulties of access ing and navigating a complex healthcare system may also affect the treatment that Latina breast cancer patients receive and contribute to disparities in breast cancer outcomes ( Fedewa et al., 2011 ; Freedman et al., 2011 ). Psychosocial Needs In addition to poorer physical outcomes compared to non Hispanic White women, Latina breast cancer patients also experience significant psychological needs during breast cancer diagnosis and treatment. Research indicates that Latinas with breast cancer ge nerally experience poorer overall quality of life compared to women of other ethnic groups (e.g., Ashing Giwa & Lim, 2010; Fatone, Moadel, Foley, Fleming, & Jandorf, 2007; Janz et al., 2009; Maly, Stein, Umezawa, Leake, & Anglin, 2008; Sammarco & Konecny, 2010). Older Latinas and those with a low level of acculturation to the dominant U.S. culture in particular are likely to report significantly worse quality of life than non Hispanic White women or younger Latinas with a higher degree of acculturation (Ja nz et al., 2009). Evidence suggests that Latina breast cancer patients, particularly homemakers, experience more family and work burdens than women of other ethnic groups, and that this high degree of functional strain contributes to lower

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4 emotional well being ( Ashing Giwa & Lim 2010). Latina patients have explained that they often feel upset at spousal expectations to maintain the same level of responsibility at home, despite their illness; at the same time, many of these women try to avoid the ro Giwa et al., 2006). Latina patients with breast cancer also explained several worries about outside employment, such as feeling embarrassed about their diagnosis and not disclosing this inform ation, not being able complete work responsibilities due to treatment side effects, Giwa et al., 2006). Fatone and colleagues (2007) also noted high levels of social a nd functional strain among minority breast cancer patients. In a recent systematic review, Yanez, Thompson, and Stanton (2011) concluded that Latinas tended to experience poorer quality of life outcomes in mental, physical, and social domains than women o f other ethnic groups. Some research suggests that Latina breast cancer patients express more psychological distress with regard to breast cancer, including sadness, depression, and body image concerns compared to non Hispanic White women (Fatone et al., 2 007; Giedzinska, Meyerowitz, Ganz, & Rowland, 2004; Spencer et al., 1999). Other studies have failed to find differences between Latina and non Hispanic White breast cancer patients with regard to reported level of distress, including depressive symptoms and body image (Culver, Arena, Antoni, & Carver, 2002; Christie, Meyerowitz, & Maly, 2010). Nonetheless, depression and body image are particularly salient concerns for Latina breast cancer patients (e.g., Ash ing Giwa et al., 2006; Christie et al. 2010; Galvn, Buki, & Garcs, 2009 ; Moadel, Morgan, & Dutcher, 2007 ). In one study, nearly three

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5 quarters (72.7%) of Latina breast cancer patients reported that they desired help learning how to c ope with their sadness (Moadel et al., 2007 ). In another, 38% of Latina breast cancer patients reported symptoms consistent with a diagnosis of depression ( Christie et al. 2010 ). Latina breast cancer patients specifically described depression, feelings of isolation, and feeling emotionally overwhelmed as common react ions to breast cancer diagnosis and having to face a series of difficult personal and medical decisions (Galv n et al. 2009). Furthermore, t hese patients commonly described sadness, embarrassment, and frustration as reactions to the physical changes they endured during their breast cancer treatments, including hair and/or breast loss and weight gain (e.g., Ashing Giwa et al., 2006; Giedzinska et al ., 2004). Some Latinas also discussed feeling incomplete as a woman, particularly following the loss of hair or a breast during treatment (Ashing Giwa et al., 2006). Younger Latinas in particular (under age 50) have demonstrated the highest degree of co ncern about their physical appearance (Ashing Giwa et al., 2010). M any of these younger women have less stable relationships than their older counterparts; therefore, their concerns regarding body image are also closely tied to fear of rejection by their partners (Ashing Giwa et al., 2010) Many Latina women fear being rejected by their partners as a wife due to a missing breast (Ashing Giwa et al., 2010). Although Christie and colleagues (2010) did not find differences in reported depressive symptoms or body image concerns between Latina and non Hispanic White breast cancer patients, they did find that Latinas reported significantly worse sexual functioning, even when controlling for covariates. Latina breast cancer patients specifically reported less s exual desire, more difficulty becoming aroused, difficulty being able to relax and enjoy sexual experiences,

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6 and greater difficulty achieving orgasm compared to non Hispanic White women ( Christie et al. 2010 ). For example, a large portion (71%) of Latina women reported that they were not interested in sexual activity ( Christie et al. 2010 ) Similarly, Spencer and colleagues (1999) also found that Latina breast cancer patients reported a greater degree of sexual disruption than women from other ethnic gr oups, and demonstrated greater concerns regarding their intimate relationships. Anxiety is also common among Latina breast cancer patients, especially regarding medical procedures, physical well being, long term treatment side effects, financial concerns, and family worries (Ashing Giwa et al., 2004; Spencer et al., 1999). Fear of recurrence and fear of rejection by their partners have been found to be especially prevalent among Latina breast cancer patients when compared to their non Hispanic White counte rparts (Ashing Giwa et al., 2004; Spencer et al., 1999). Moadel and ) results highlight just how common anxiety is among Latina breast cancer patients: 84.4% of the Latina breast cancer patients sampled desired information about general s tress management. Specifically, over half of the sample reported wanting help managing worries about their family (54.7%) and over two thirds desired support overcoming their fears (68%) (Moadel et al., 2007 ). High levels of psychological distress have a lso been shown to decrease social support from friends and family (with the exception of spouses) for Latina breast cancer patients perhaps because others perceive high levels of distress as aversive (Alfe ri et al., 2001). Therefore interventions that aim to help patients manage their distress early on during diagnosis and treatment could be especially beneficial.

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7 Latina breast cancer patients have described the importance of social support during breast cancer diagnosis and treatment (e.g., Buki, Garc s, Hinestrosa, Kogan, Carrillo, & French; 2008), and previous research has demonstrated that psychosocial support can reduce pain and distress and improve adjustment to breast cancer during treatment ( Galvn et al., 2009 ; Sammarco, 2003; Npoles Springer, Mndez, Prez Stable, 2007). Latina breast cancer patients have described support from family, health professionals, staff, and breast cancer survivors as important sources of social support, helping them feel more optimistic and empo wered to fight against the disease (Ashing Giwa e t al., 2006; Buki et al., 2008). Latina women tended to perceive support from their families as absolutely vital to their emotional well being; this was especially true for women who received support from t heir male partner or spouse ( Galvn et al., 2009 ). This reliance on family may be partially related to the cultural tendency for a strong emphasis on family support especially during times of illness or stress, known as familialism (Diaz, 2002). Al feri and colleagues (2001) specifically demonstrated how emotional support from friends and instrumental support from spouses at the beginning of treatment was associated with less psychological distress after surgery. Unfortunately, patients lacking adequate social support had less optimism about their futures and were less sure about their treatment decisions (Buki et al., 2008). Despite the importance of social support during the breast cancer treatment journey, Latina patients perceive less social support overall than their non Hispani c White counterparts and express more concern over social rejection by loved ones (Sammarco & Konecny, 2010; Janz et al., 2008; Spencer et al., 1999). Many Latina breast cancer patients describe feelings of isolation during b reast

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8 cancer and experience a sense of secrecy or shame about the diagnosis (Lopez Class, Gentil, Kreling, Caicedo, Mandelblatt, & Graves, 2011). Although non Hispa nic White patients may have greater access to different types of social support, research suggests that Latina patients receive slightly more support from their spouses and family members than members of other ethnic groups (Sammarco & Konecny, 2010). This seems to be particularly true of Latina patients who have family in the United States; those who lacked a close family network tended to rely on support groups and spirituality for emotional support ( Galvn et al., 2009 ). Older Latina patients or those without family in the United States may be especially susceptible to low social support. As previously described, Latina patients with higher levels of distress may also experience an erosion of support from friends and family members (except spouses) over time (Alferi et al., 2001). Lati na patients have also explained that they do not want to rely on their families for emotional support during breast cancer, as they want to avoid burdening family members with inconvenience or emotional distress (Ashing Giwa et al., 2006). Despite Latinas need for social support during breast cancer diagnosis and treatment, they are less likely than their non Hispanic White counterparts to have access to or participate in psychosocial services (Bowen et al., 2007; Npoles Springer et al., 2007). Regardles s of race/ethnicity, a majority of breast cancer patients report many ongoing physical and psychological symptoms related to cancer treatment, especially musculoskeletal pain, fatigue, difficulty sleeping, hot flashes, and sexual disruption (Fatone et al., 2007; Fu et al., 2009). However, when compared to non Hispanic White women, Latina breast cancer patients were over two times as likely to report being in poor or fair health, reported more chemotherapy related pain symptoms, and were more

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9 likely to repo rt a greater total number of pain symptoms (Fu et al., 2009; Giedzinska et al., 2004). Giedzinska et al. (2004) also indicated that physical symptoms caused the greatest amount of distress for Latinas with breast cancer; these physical symptoms were the s trongest predictor of quality of life among these women. Latina women were also found to report more concerning symptoms when they had lower incomes and when they received chemotherapy (Giedzinska et al., 2004). Evidence also suggests that Latinas, espec ially Spanish speaking and low income Latinas, report higher pain severity than women of other ethnic groups (Mosher, DuHamel, Eget, & Smith, 2010). Mosher et al. abo ut how to manage pain and confusion about how to address pain issues with their healthcare team, highlighting a need for improved patient provider communication. These disparities in physical pain symptoms are especially concerning, as greater physical sy mptoms and breast cancer treatment side effects have been associated with increased psychological distress and lower quality of life (Chang, Hwang, Feuerman, & Kasimis, 2000; Jim, Andrykowski, Munster, & Jacobsen, 2007). Although Latina patients may have a tendency to express emotional distress with physical symptoms (Giedzinska et al., 2004; Kaplan & Marks, 1999), numerous studies highlight the high levels of emotional distress also reported by this population ( e.g., Ashing Giwa et al., 2006; Christie et al. 2010 ; Galvn et al., 2009 ; Moadel et al., 2007 ; Spencer et al., 1999 ), making reports of high pain less likely related to somatization. Poor patient provider communication and low health literacy are common among Latina patients and can impede access and adherence to treatment, understanding of diagnosis and treatment, as well as contribute to the high levels of decisional regret that

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10 Lati na breast cancer patients experience (e.g., Buki et al., 2008; Hawley et al., 2008). Language is a significant barrier in patient provider communication, and many Latina patients have reported that interpretation services are overwhelming and exhausting, limiting their willingness to ask additional questions or clarify health concerns (Ashing Giwa et al., 2006; Galvn et al., 2009 ; Buki et al., 2008). Evidence suggests that Spanish speaking Latina breast cancer patients have significantly less knowledge a bout the disease and its treatment than other low income women from different ethnic groups (Chen, Diamant, Thind, & Maly, 2008; Janz, Mujahid, Hawley, Griggs, Hamilton, & Katz, 2008). Research suggests that lack of knowledge about breast cancer likely al so stems from additional factors such as low educational attainment, a dearth of information available in Spanish, health insurance status, and failure of medical staff to ensure clear communication (Ashing Giwa e t al., 2006). Cultural beliefs are also li kely to affect Giwa et al., 2006; Galvn et al., 2009 ; Sammarco & Kocecny, 2010). Latina patients may defer treatment decisions to their healthcare providers without ques tion due to the cultural value of respeto which emphasizes showing respect for individuals of higher status, such as doctors (Ashing Giwa et al., 2006; Galvn et al., 2009 ). In one study, 40% of medically underserved patients were unaware of their breast cancer diagnostic stage (Fatone et al., 2007). It is also common for Latina breast cancer patients to misunderstand their diagnosis, treatments, and other cancer related information (Ashing Giwa et al., 2006; Garcs et al., 2008). Additionally, Latina b reast cancer patients report higher levels of uncertainty during treatment than their non Hispanic white counterparts

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11 ( Galvn et al., 2009 ; Sammarco & Konecny, 2010) which may be due, in part, to poorer patient provider communication. With regard to trea tment decision dissatisfaction and regret, Latina breast cancer patients are at particularly high risk (Hawley et al., 2008). Spanish speaking Latinas were 8.7 times more likely to be highly dissatisfied with their treatment decisions and were 9.4 times m ore likely to regret their decisions than non Hispanic White patients, although these odds ratios decreased to 5.6 for both dissatisfaction and regret when the researchers controlled for confounding variables such as age, education, marital status, and tum or size, histology, and behavior (Hawley et al., 2008). Overall, it is clear that speaking Latina breast cancer patients are several times more likely than their non Hispanic White counterparts to expe efficacy in written and verbal information are not (Chen et al., 2008). The research findings outlined knowledge of breast cancer and treatment options through increased self efficacy an d improved patient provider communication. A formal assessment of the psychosocial needs of cancer patients highlights that Latina patients desire additional support during diagnosis and treatment (Moadel et al., 2007 ). In this assessment, male and fema le L atino patients identified psychosocial needs spanning several domains. Informational support was the most endorsed need among Latino patients; this included assistance learning more about cancer, its treatment, how to

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12 manage side effects and other sym ptoms, as well a s lifestyle change (Moadel et al., 2007 ). Supportive needs were also rated very highly among Latino patients, including assistance with coping, stress management, and maintaining relationships. These patients reported needing additional practical support including financial support and transportation assistance, as well as spiritual support, such as finding hope, exploring the meaning of life, and discussing death and dying when necessary (Moadel et al., 2007 ). The number of Latina patie nts that reported that they would want spiritual support during their breast cancer experience (60%) was nearly twice as many as non Hispanic White patients (31%) (Moadel et al., 2007 ). This is consistent with other research highlighting the importance of faith as a coping mechanism, although significant spiritual and existential needs remain for many Latina breast cancer patients ( Ashing Giwa et al., 2010; Fatone et al., 2007; Moadel et al. 2007 ; Spencer et al., 1999). Notably, Latino patients demonstra ted the greatest need for practical, supportive, and spiritual support compared to both non Hispanic White and African American patients (Moadel et al. 2007 ); this is consistent with other research highlighting psychological disparities affecting Latino c ancer patients (e.g, Janz et al., 2009; Fatone et al., 2007; Giedzinska et al., 2004; Janz et al., 2009; Spencer et al., 1999 ). Galvn, Buki, and Garcs (2009) also concluded that formal emotional, information al and instrumental support services are cru cial for Latina breast cancer patients undergoing treatment in order to enhance quality of life. Psychological Interventions for Breast Cancer Patients A recent meta analysis assessing the efficacy of randomized, controlled trials of psychological interven tions for breast cancer patients revealed that they are generally helpful for patients during cancer diagnosis and treatment (Naaman, Radwan, Fergusson,

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13 & Johnson, 2009). Specifically, the individual and group interventions included in the study were asso ciated with at least moderate improvements in anxiety and depression, and overall strong effects on functional quality of life. Patients with clinically significant levels of distress tended to reap greater benefits than those patients who participated in psychological treatment to prevent further distress. In general, short term, coping focused interventions (defined as less than 20 hours) were found to be more effective for patients with earlier stage cancers, whereas long term, support focused interven tions were best for patients with advanced cancers. Despite these positive findings, medically underserved patients, such as Latinas, are not adequately represented in the majority of breast cancer intervention studies aimed at improving quality of life a nd decreasing psychological distress (Naaman et al., 2009). As previously discussed, Latina breast cancer patients tend to have poorer outcomes compared to their non Hispanic White counterparts across the cancer care continuum, spanning from screening to survivorship (CCC, 2011; Curtis et al., 2008; Howe et al., 2006; Molina, Thompson, Espinoza, & Ceballos, 2013). The majority of research dedicated to reducing or eliminating these health disparities has generally focused on the early stages of cancer car e, such as improving mammography screening rates and decreasing delays to follow up regarding abnormal screening results (Molina et al., 2013; Robinson White, Conroy, Slavish, & Rosenzweig, 2010). Other studies have focused on evaluating patient navigati on programs as a method to improve timeliness and adherence to care, generally by helping patients overcome a variety of logistical and financial barriers to cancer diagnosis and treatment (Molina et al., 2013; Wells et al., 2008). Although these are all important steps to reduce breast cancer disparities,

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14 substantially less attention has been paid to the development and evaluation of psychosocial interventions designed to improve quality of life and address psychological concerns among Latina breast cance r patients (Molina et al., 2013). Given the significant psychosocial and psychoeducational needs of Latina breast cancer patients ( e.g., Ashing Giwa, 2008; Moadel et al., 2007 ; Spencer et al., 1999), the lack of culturally and linguistically appropriate programs to serve this population during diagnosis and treatment is especially troublesome. There is some evidence suggesting that collaborative care interventions wherein multiple types of specialty providers work together to address patient needs, may be a helpful way to address the needs of Latina breast cancer patients (Dwight Johnson, Ell, & Lee, 2005; Ell et al., 2011; Ell et al., 2008). Dwight Johnson and colleagues (2005) evaluated a collaborative care intervention for Latina breast and cerv ical cancer patients with comorbid major depressive symptoms. The program consisted of eight weekly meetings with a social worker who delivered manualized psychotherapy (problem solving psychotherapy), patient education, and system navigation, along with Intervention patients demonstrated improved emotional well being and were more likely to have reduced their depressive symptoms by half, compared to control grou p participants (Dwight Johnson et al. 2005). Additional year long collaborative care interventions among a predominantly Latina cancer population showed similarly positive outcomes, including reduction of depressive symptoms and improved social, functional, emotional, and physical well being (Ell et al., 2011; Ell et al., 2008). These results suggest that collaborative care interventions can be a useful method for working with

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15 Latina breast cancer patients. It is important to consider, however, that these programs we re somewhat narrow in focus; all participants endorsed depressive symptoms and addressing those concerns was the focus of treatment. Other concerns, such as communication with health care providers, spirituality, anxiety, coping with treatment side effect s, and body image issues, all commonly reported by Latina patients with breast cancer (e.g., Ashing Giwa et al., 2004; Garcs et al., 2008; Moadel et al. 2007 ; Spencer et al., 1999 ) were not explicitly addressed. Formative research about the development and use of peer support interventions among Latina breast cancer patients has also been recently reported. Npoles Springer and colleagues (2009) completed a series of in depth interviews with Latino cancer patients who were referred for psychosocial ser vices, Latina breast cancer survivors, and advocates for Latina breast cancer patients. Results indicated that Latino cancer patients who had utilized peer psychological support services generally described them as positive, noting that emotional support, feeling understood in their cancer experience, and learning how to manage anxious and depressive symptoms were among the most valuable aspects of treatment (Npoles Springer et al., 2009). These patients described a need for additional information on can cer, treatment, treatment side effects, and community resources, which is consistent with p revious research (e.g., Moadel et al. 2007; Npoles Springer et al., 2009). They explained that support programs should address topics such as fear of impending de ath, hope, self advocacy, spirituality, and communication. This study also provided a clear recommendation that future programs should begin close to diagnosis and that in person and telephonic interventions are generally feasible methods to use with Lati na breast cancer patients (Npoles Springer et al., 2009). Additional

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16 research on the use of peer support groups highlights the importance of the family in Latino culture (Npoles Springer et al., 2007). In one study, Latinas whose families strongly enco uraged them to attend a support group were approximately seven times more likely to do so than Latinas whose families did not provide encouragement. The only peer support intervention for Latina breast cancer patients identified in the literature focused on using a trained cancer survivor as a navigator to help patients make informed treatment decisions (Sheppard et al., 2008). Although the intervention was brief, lasting only 40 to 120 minutes, program participants reported improved communication and deci sion making skills, and were highly satisfied with their interactions with the cancer survivor (Sheppard et al., 2008). These results are promising, although, like other programs, it was limited in scope and did not address many of the significant, ongoin g psychological needs of this underserved population. Other researchers have begun to explore technology as a means to reach underserved Latina breast cancer patients. Ashing Giwa (2008) created a culturally sensitive telephone intervention, consisting o f six cognitive behavioral sessions on a variety of topics including relational concerns, communication, stress management and relaxation, medical and treatment concerns, psychological concerns, and general self care. The telephone intervention was design ed to be flexible to address unique patient needs, and was feasible among Latina breast cancer patients. Participants expressed gratitude for the opportunity to discuss their experiences with a culturally and linguistically competent counselor, and descri bed the stress management sessions as especially useful. Results indicated significant improvements in physical well being and overall quality of

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17 life, with nonsignificant positive trends for family/social, functional, and well being noted from pre to po st intervention (Ashing Giwa, 2008). Changrani and colleagues (2008) created an online support group intervention for Latina immigrants with breast cancer. The participants in this program met online weekly for 90 minutes with a small group of other bre ast cancer patients and a trained, bilingual group facilitator, over a period of 30 weeks. The online support groups discussed a variety of topics, including managing treatment side effects, isolation, and relationship concerns. Although the researchers determined that online support groups were a feasible method for working with Latina breast cancer patients, the intensive intervention did not lead to any significant changes from pre intervention to post intervention (Changrani et al., 2008). A computer based intervention was also developed to help Latina breast cancer patients learn more about their treatment options and the decision making process (Jijaba Weiss et al., 2011). This intervention consisted of soap opera like stories paired with learning knowledge of treatment options and helped them to more clearly understand the relevant factors in the treatment decision making process. Furthermore, none of the Latinas who participated in the compute rized intervention reported being unsure about their surgery choice, whereas 10.5% of control group participants indicated feeling unsure about their decision (Jijaba Weiss et al., 2011). While computerized interventions may hold some promise for reaching Latina breast cancer patients, it is clear that much more research needs to be conducted on this possibility. Overall, research demonstrates that psychological interventions have been effective in addressing mental health needs of breast cancer patients; however,

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18 researchers have not assessed comprehensive culturally and linguistically appropriate programs delivered in person for Latina patients ( Naaman et al., 2009) The lack of psychosocial support programs for Latina breast cancer patients is especiall y worrisome, given their high levels of reported psychosocial needs ( e .g., Ashing Giwa, 2008; Moadel et al. 2007; Spencer et al., 1999) Studies to date suggest a variety of intervention styles are feasible for use with Latina breast cancer patients, inc luding collaborative care ( Dwight Johnson et al. 2005 ; Ell et al., 2011; Ell et al., 2008), in person and telephonic programs ( Ashing Giwa, 2008; Npoles Springer et al., 2009) and online interventions ( Changrani et al., 2008; Jijaba Weiss et al., 2011) The strongest available evidence thus far is for the use of collaborative care programs, which have been shown to improve depressive symptoms in Latina cancer patients ( Dwight Johnson et al. 2005 ; Ell et al., 2011; Ell et al., 2008). Summary Overall, evidence is clear that Latina patients generally experience significant physical and psychosocial disparities during breast cancer diagnosis and treatment compared to women of other ethnic groups. Research indicates that Latinas demonstrate a particularl y high degree of psychosocial distress and have many unmet needs during their t reatment journey s (e.g., Moadel et al. 2006; Spencer et al., 199 9). Sadness, depression, anxiety, body image concerns, inadequate social support, difficulty with pain manageme nt, poor patient provider communication, and a high rate of decisional dissatisfaction and regret are prevalent among this population (e.g., Ashing Giwa & Lim, 2010; Fatone et al., 2007; Hawley et al., 2 008; Ja nz et al., 2009; Moadel et al., 2007 ; Spencer et al., 1999). Despite the psychosocial disparities that Latina breast cancer

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19 patients face, there has been very little research conducted on programs to ameliorate these disparities and address the needs of these patients (e.g., Ashing Giwa, 2008; Changr ani et al., 2008; Dwight Johnson et al. 2005 ; Jijaba Weiss et al., 2011). No comprehensive, in person interventions were identified in the literature that addressed a our research team devised a psychosocial and psycho educational intervention informed by both the extant literature and our own formative research. The purpose of the present study is to determine if such an intervention may be feasible and acceptable to Latina breast cancer patients. Research Questions 1. How did Spanish speaking Latina breast cancer patients perceive the content of the AYUDA intervention? a. What did these patients identify as the most helpful topics of the intervention? b. What did these patients identify as the least helpful topics of the intervention? c. What topics, that were not included in the intervention, did these patients identify would have been helpful to discuss during breast cancer treatment? d. What did these patients identify were the most helpful techniques (or methods) used during therapy? 2. How did Spanish speaking Latina breast cancer patients perceive the psycho educational materials provided in the AYUDA intervention?

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20 a. According to these patients, how were the vignettes helpful to reflect on issues that commonly arise during breast cancer treatment? b. How much did these patients feel they could relate to the characters portrayed in the vignettes? c. How useful did these patients think it was to read the vignettes as homework before th e next session? d. In what ways were the psycho educational booklets/pamphlets useful for learning more about how to deal with breast cancer? 3. Were the assessment instruments used in the AYUDA intervention appropriate with low literacy Spanish speaking Latina breast cancer patients? a. How many patients were able to complete the measures individually? b. How relevant did the patients feel that the assessments were to their experience of going through breast cancer treatment? c. Were there any assessment measures or item s that these patients could not understand or thought were confusing to them? d. Were there any assessment measures or items that these patients felt uncomfortable answering? 4. W ere Spanish speaking Latina breast cancer patients interested and able to participa te in the AYUDA intervention while in treatment? a. What was the intervention recruitment rate? b. What was the intervention retention rate? c. What was the attendance rate (number of sessions scheduled/number of sessions attended)?

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21 d. According to these patients, wha t motivated them to attend therapy appointments? e. What factors explained these patients missing sessions or discontinuing the program? f. To what degree did meeting with a counselor on the same day as a medical appointment affect the ability of these patients to participate in the intervention? 5. What feedback did the AYUDA participants have regarding the delivery of the AYUDA intervention? a. What did these patients identify as the benefits and drawbacks of in person individual sessions? b. What did these patients ide ntify as the benefits and drawbacks of telephone sessions? c. How helpful did patients find the combination of in person and over the phone sessions, and why? d. Overall, did these patients prefer individual or telephone sessions? e. How many sessions were conducted in person and on the telephone? f. What feedback did these patients provide regarding the length and number of sessions? g. What was the average length of sessions that patients participated in? h. What feedback did patients have regarding the timing of w hen the intervention was introduced along their cancer care continuum?

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22 i. What feedback did patients have regarding the timing of when the intervention concluded along their cancer care continuum?

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23 CHAPTER II METHODS Research Design This study was a feasibility study and employed a one group, intervention only research design. Particular attention was given to process evaluation of the intervention. The intervention being assessed in this study was the second phase of a larger research project. Th e first phase consisted of formative to gather information to develop the intervention through interviews with Spanish speaking breast cancer survivors and their healthcare providers The second phase consisted of designing the intervention, im plementing it, and evaluating it to determine its feasibility and acceptability. The intervention design was guided by both the extant literature as well as information gathered from the formative interviews conducted in the first phase of the larger stud y. All study procedures and materials were approved by the Colorado Multiple Institutional Review Board (COMIRB). Formative Research Due to the limited in formation in the literature, the research team conducted formative interviews with Latina breast canc er survivors and key informants (breast cancer healthcare providers and hospital s treatment journeys and gather recommendations for the development of a comprehensive psychosocial and psychoeducational interv ention for this population. This study s ought to assess the feasibility and acceptability of a newly developed psychosocial and psychoeducational support intervention for Spanish speaking Latina breast cancer patients. The intervention design was guided by the few extant research studies reviewed

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24 above, as well as results from the formative research phase of the intervention. Findings from these preliminary interviews are summarized below. Latina p atients. Breast cancer survivors explained important patient characteristics, the cancer experience, and the hospital experience, along with general program recommendations. Survivors highlighted communication with providers, language barriers, cancer literacy lev el, available cancer resources, and health beliefs as important themes. Regarding the cancer experience, survivors discussed the process of diagnosis and treatment along with psychological distress and coping mechanisms. A large part of the discussion fo cused on fear and anxiety, treatment side effects, and the importance of family support and spirituality. Healthcare p roviders. Key informants expanded on patient factors, healthcare s reported that important patient factors to consider during intervention design included educational level, literacy level, misconceptions about cancer, and psychological concerns. Specifically, fear of cancer, anxiety, depression, relationship concerns, body image issues, and facing an overwhelming experience were noted as key sources of psychological distress. These healthcare providers explained available psychological resources and breast cli nic logistics at Denver Health They also suggested that h elping patients understand treatment side effects, support for lifestyle modification, and an emphasis on treatment adherence should be included as intervention topics. Survivors and key informants alike also provided specific suggestions regarding the in tervention content, delivery of information, and the timing and scheduling of the intervention. These

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25 suggestions were carefully considered during program creation, and are noted in the Participants Participant inclusion criteri a req uired that all women had to be Spanish speaking Latina s with breast cancer, between the ages of 18 and 89 years of age, and had to have receive d breast cancer treatment at the safety net hospital in Denver, Colorado As a safety net hospital, Denver of uncompensated medical care to underserved patients (Denver Health, 2013). Patients with any breast cancer st age (0 to IV) were eligible for participation in this study. Study exclusion criteria consist ed of the following mental health conditions: diagnosed cognitive impairments, drug or alcohol abuse, and current or past history of suicidal ideation/attempts. Refusal of treatment at the safety net hospita l was also an exclusion criterion In 2012 2013, 54 Hispanic women were diagnosed with breast cancer at Denver Health. These women ranged from 31 to 83 years of age ( M = 54.69, SD = 11.29). In the same time p eriod, 41 non Hispanic White women were diagnosed with breast cancer at Denver Health. These women ranged from 31 to 94 years of age ( M = 59.68, SD = 12.30). Interestingly, a n independent t test revealed that during this time period Hispanic patients te nded to be significantly younger at breast cancer diagnosis than non Hispanic White patients ( t = 2.06, p = .04).

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26 Procedures Recruitment All participants in this study were recruited from a safety net hospital in Denver, Colorado. This safety net hospital serves over 250,000 residents who reside in several medically underserved areas. A Spanish speak ing patient navigator employed in the Division of Hematology/Oncology at the safety net hospital recruited patients for this study. Patients were tar geted for participation as closely following their formal diagnosis of breast cancer as possib le. This patient navigator had authorized access to patient information and made the initial contact to screen patients for study participation in pe rson or by t elephone. She also invited eligible patients to participate in this study. Patients who express ed interest in participation were given an appointment time to individually meet with one of the intervention t herapists. Patients did not receive compensatio n for their participation in this intervention to as sess whether or not patients were intrinsically motivated to participate in the program versus motivated by monetary compensation. The study therapists reviewed the informed consent with each patient. Participants were consented in a private office within the hospital where on ly the therapist and patient were present, free from disruption. Patients were provided with oral and written explanations of the research study in Spanish; each individual was gi ven an opportunity to ask questions about the terms of study participation. Patients who decided to participate in the study were asked to sign a combined informed consent and HIPAA form prior to the start of the intervention. Patients were also provided with a copy of this form to take home.

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27 Intervention Therapists The intervention therapists were both female doctoral level trainees in the Clinical Health Psychology Ph.D. program at the University of Col orado Denver. Each therapist was bilingua l in Eng lish and Spanish and had completed the foundational coursework to deliver direct psychological care to patients. A licensed clinical psychologist met with the therapists for weekly supervision in order to monitor patient progress and provide recommendatio ns for patient care. Intervention Overview The prim ary aims of the intervention were to increase patient quality of life, enhance patient empowerment and self efficacy, and increase treatment adherence. The intervention was designed to address common iss ues that Latina breast cancer patients encounter during treatment, as identified in the literature and from recommendations gathered from the breast cancer survivor and healthcare provider interviews conducted in the first phase of the larger study. An as sessment among underserved cancer patients indicated that Latino patients reported the highest degree of overall need, including needs in the informational, practical, supportive, and spiritual domains (Moadel et al., 2007 ). Following these recommenda tion s, this intervention focused on informational, supportive, and spiritual needs. An on site, bilingual, Oncology /Hematology patient navigator was primarily responsible for attending to the practical needs of patients. Another key compone nt of the interven tion design was flexibility to accommodate individual pa tient needs. The intervention wa s guided by a cognitive behavioral theoretical orientation. behavioral approach appears to be an effective intervention strategy for Latina women.

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28 Intervention delivery. The intervention began as soon as possible following a d cancer treatment, as advised by the majority of healthcare providers interviewed during the formative phase of the larg er study. The prog ram was designed to include five to eight weekly therapy sessions lasting approximately 30 minutes to one hour. These sessions took place in a private office at the safety net hospital to maintain patient confidentialit y. All therapy sessions were conduc ted in Spanish and audio recorded for supervision purposes. In addition to individual live therapy sessions, some patients also receive d telephone therapy sessio ns or less formal check in calls in between their live sessions. Telephone sessions generall y occurred when a patient was unable to make her regu larly scheduled appointments, was unavail able during clinic hours, or had another reason why she was unable to meet in person. Approximately half of the breast cancer survivors interviewed in the format ive phase of the larger study indicated they would prefer in person sessions, whereas the rest of the women preferred telephone sessions. The decision to include a combination of in person and telephone sessions was driven by the clear need to remain flex ible to varied patient needs and preferences. Some women also expressed an interest in group therapy during their interviews. The research team decided not to pursue a group based intervention, as the bilingual patient navigator recently began a support group for Spanish speaking breast cancer patients. Thus, the Spanish speaking Latina breast cancer patient population at Denver Health still lacked individual psychological support services.

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29 Intervention topics. The intervention topics include d required sessions on general introduction and health education, communication, coping with treatment side effects, cultural beliefs and spirituality, self care, as well as optional additional sessions that focus ed on body image issues and coping with distress. The order of these sessions was designed to flexibly meet the needs of the individual patient. With the exception of the first session (intake/general introduction and health education) and the final session (self c are), patients were permitted to complete t he intervention topics is any order, allowing them to work with their therapists to prioritize the most personally relevant topics during certain phases of breast cancer treatment. Patients experiencing greater levels of distress had the option of three a dditional sessions to address body image, depression, and a nxiety, whereas patients who fe l t they were coping well did not have to focus on these topics. Introductory session. The f irst intervention session was designed to serve as a brief intake assessment, as well as a general introduction to the program and breast cancer health education. The purpose of the first session was to assess patient psychosocial needs, normalize the often overwhelming experience of having breast can cer, and provide education regarding cancer treatment. Interviews conducted during the formative phase of the larger research project revealed that survivors and healthcare providers alike commented on the overwhelming experience these women face when the y receive their initial diagnosis of breast cancer. These interviews also showed that Providers elaborated that m any Latina patients misunderstood their cancer and had mis conceptions about the course of treatment. Interviews with Latina breast cancer

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30 survivors supported these findings, as many of these women reported misunderstanding their diagnostic stages and being confused about their treatment. Research also highlight of breast cancer diagnosis and treatment (e.g., Fatone et al., 2007; Moadel et al., 2007 ). Patients were given booklets titled Understanding Breast Cancer ( Lo que debe saber sobre el cncer del seno ), which featured information about breast cancer and its treatment (Krames Patient Education, 2011). The intervention called for thera pists to review the infor mation presented in the booklet with patients and encourage discussion about these topics in the first session During this introductory session, the therapists also administer ed the socio demographic questionnaire and all pre intervention measures (des cribed below). If patients were willing and able to complete the measur es independently, they were allowed to take the measures home in a manila envelope to complete and return at the start of the next session. Communication session. Communication wa s another required topic in the interventio n. The communication session was empowerment and self efficacy to communicate with their healthcare team. As previously discussed, extant research indicates that among medically underserved women, greater self efficacy in communicating with the he althcare team is predictive of increased breast cancer knowledge (Chen et al., 2008). Spanish speaking patients have been shown to have poorer communication with healthcare providers, have misconceptions about the patient provider relationship, and greate r difficulty effectively managing pain (Mosher et al., 2010). Additionally, Hawley and colleagues (2008) found that Spanish speaking Latina breast cancer patients were more likely to report too little communication and

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31 involvement in treatment decision ma king, as well as high levels of decisional regret. Poor communication was often cited during the healthcare provider interviews as an area of concern among Latina breast cancer patients. Providers noted several reasons for poor communication, including l anguage barriers, difficulty with interpreters, and the patient being too overwhelmed to comprehend information provided. Providers also described how many Latina breast cancer patients seem to defer their treatment decisions to their healthcare providers without actively asking questions or considering alternative treatment options. The initial intervention design called for assertiveness training, role playing, assisting with problem solving, and enhancing patient self efficacy as the primary methods of intervention Patients were provided with the Spanish version of Questions to Ask Your Doctor About Breast Cancer ( Preguntas para el mdico acerca del cncer de seno ) (Susan G. Komen for the Cure, 2008), which is a pamphlet containing a series of cards w ith important questions about various aspects of breast cancer, including diagnosis and treatment options. Therapists discussed the questions cancer care journey. Cop ing session. Coping w ith side effects of treatment was also a required intervention topic. During the formative research interviews with breast cancer survivors during the first phase of the larger study, every survivor discussed the impact of side effects on her well being during treatment. As previously n oted, Latina breast cancer patients report a greater number of physical symptoms, especially pain symptoms, and experience greater overall symptom burden than women of other ethnic groups (Fu et al., 2009; Giedzinska et al., 2004; Spencer et al., 1999). T he aim of the sessio n on coping

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32 with side effects was nce their quality of life. The plan for this session was for therapists to focus on emotion focused coping skills, relaxation, activity pacing, and problem solving to intervene with patients Although not in the original plan, therapists often refer red back to the booklet Understanding Breast Cancer (Krames Patient Education, 2011) to review treatment side effects. This booklet was distr ibuted during the first introductory therapy session. Cultural beliefs and spirituality session. A focus on spirituality and/or religion is a common aspect of Latino culture; therefore, the intervention design included this topic within the broader discus sion about culture. Extant research and our formative interviews with Latina breast cancer survivors and their healthcare providers all indicated treatment jo urney. As previously noted, r esearch findings indicate that Latina cancer patients are more likely to use religious coping than non Hispanic White women (Culver et al., 2002; Culver et al., 2004), and Moadel et al. (2007 ) found that Latina cancer patients endorsed the highest need for spiritual support compared to patients of other ethnic groups. More than half of the survivors interviewed described the importance of spirituality or their faith in coping with their breast cancer. Latina breast ca ncer sur vivors interviewed also commented on how other cultural beliefs and norms, such as the cause of cancer and female modesty, impacted their breast cancer experience. Because of the apparent significance of these topics, the intervention design included a se ssion on cult ural beliefs and spirituality for all patients in the study. This session was designed to focus on enhancing patient empowerment, coping, find i ng meaning and purpose, and include d discussion of death or dying when relevant This session relied heavily on

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33 empathy and acceptance as intervention strategies. Therapists also helped patients address cognitive barriers to treatment when appropriate. Self care session. The initial intervention design included a session on self care as a final and required to pic. The goal of this session wa s to help patients adhere to the remainder of their treatment and follow up care, including follow up appointments, diet and exercise recommendations, and long term treatment when indicated (e.g., biological treatment regimens). Therapists and patients also reviewed progress and coping skills learned throughout the intervention. Although breast cancer survivors did not discuss treatment adherence during their interviews, several of the healthcare providers c ommented on the importance of this topic. Specifically, providers identified a need to work with patients on maintaining a regular lifestyle, weight management, increasing social engagement, and improving adherence to medical treatment. Intervention stra tegies in the self care session included goal setting an d addressing cognitive barriers. Reinforcement of patient progress and improved coping and communication skills was also emphasized. Body image session. In addition to the required topics describe d above, patients and therapists could also collaboratively decide if including a session on body image would be appropriate and beneficial to improving Body image was included as an optional topic, as the research team expe cted this topic to be very important for some women but less relevant for others, depending on the plans. For example, the research team hypothesized that women who unde rwent mastectomies and/or experienced hair loss during chemotherapy would be more likely to

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34 benefit from a body image discussion than women who had just a small lumpectomy and did not receive chemotherapy. In the formative interviews, all but one of the Latina breast cancer survivors described body image as a significant psychological concern, often related to feelings of sadness or depression. The most commonly reported body image issue was hair loss; however, breast loss and weight gain were also discu ssed during the interviews. The majority of healthcare providers interviewed described the of life. Some of these providers elaborated that younger breast cancer pa tients seem to be affected by body image issues to a greater degree than their older counterparts, and of sexual concerns during treatment is consistent with these re ports. As previously discussed, evidence suggests that Latina women may experience a greater degree of distress related to body image and greater sexual dysfunction than women of other ethnic groups ( Christie et al. 2010 ; Spencer et al., 1999). Due to t he interrelatedness of body image issues and sexual dysfunction, there was an option to discuss of sexual dysfunction in this session, if relevant. As initially designed, the body image session relied on empathetic listening and cognitive restructuring as intervention strategies of choice. Depression and anxiety sessions. Patients were also permitted to include up to two additional sessions focused on coping w ith distress if the patient and therapist agreed that the patient could benefit from a discussio n about how to cope with depressive and anxious symptoms to improve quality of life. Based on previous research and the formative interviews with breast cancer survivors, the research team posited that most, but not all, of the women in the study would ha ve significant depressive and/or anxious

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35 symptoms that could be addressed in discussions about coping with distress. For women who did not experience depressive or anxious symptoms, a review of general coping skills would be sufficient, which could be inc luded in the self care module. T he majority of breast cancer survivors interviewed during the formative phase of the study reported some psychological distress while undergoing breast cancer treatment. Survivors commonly reported depressive symptoms duri ng treatment, and one survivor described becoming depressed as her initial reaction to her cancer diagnosis. Several patients described anxiety; the most common concerns included worries about their families, financial worries, and fears of suffering, sid e effects, and recurrence. Healthcare provider interviews also identified depression and anxiety, especially fear, as common psychological concerns during breast cancer treatment. As previously mentioned, research indicates that Latina breast cancer pati ents, especially those who are low in acculturative status or are homemakers, experience greater psychosocial distress and greater disruption of daily life than women of other ethnic groups (Ashing Giwa & Lim, 2010; Janz et al., 2009; Spencer et al., 1999) Key intervention strategies for coping with distress included discussing emotion and problem focused coping strategies, relaxation techniques, pacing skills, and cognitive reframing when appropriate. Psychoeducational materials. In order to encourage patients to open up to address their concerns during the therapy sessions, they were provided with fictitious patient case examples (vignettes) to read before several of their sessions (s ee Appendix A for English and Spanish versions ). The majority of survivors interviewed during the formative phase of the larger study indicated that they would prefer to read and contemplate these stories at home before discussing them with the thera pist. These short

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36 vignettes were designed to illus trate the intervention topics, which reflect common experiences of Latinas as they progress through their cancer treatment journey s Each vignette also featured a short series of questions to help Latinas reflect on their own experiences and ways of copin g during breast cancer treatment. As described above, patients also received the booklet Understanding Breast Cancer ( Lo que debe saber sobre el cncer del seno ) which was designed for use during the initial introduction and health education session (Kram es Patient Education, 2011). Patients also received the pamphlet Questions to Ask Your Doctor About Breast Cancer ( Preguntas para el mdico acerca del cncer de seno ) during the communication session to facilitate discussion about patient provider communi cation (Sus an G. Komen for the Cure, 2008). Assessment Instruments Patients were asked to complete several assessment measures throughout their participation in the study. All measures were administered in Spanish and completed individua lly by the patie nt, unless she wa s unable to read. If a patient was unable to read the measures individually, the therapist or patient navigator administer ed the measures in an interview format. During the first session with the therapist, each patient was asked to fill out a socio demogra phic questionnaire This questionnaire addressed general topics socio demographic questionnaire also include d diagnostic stage and expected course of treatment. Final ly, this questionnaire contained United States and Latin America a nd preference for using the Spanish or English language. T he remaining measures in this study were administered at pre intervention at

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37 the first session and post intervention at the last session or during the exit interview (see Appendix B for copies of t he English and Spanish versions of all instruments used. Copies of instruments that were copyrighted are not included in the appendix). Functional Assessment of Cancer Therapy Breast Cancer (FACT B ). The FACT B captures a wide variety of health related q uality of life topics, including physical well being (7 items), social/family well being (7 items), emotional well being (6 items), functional well being (7 items), and additional concerns related to breast cancer in particular (10 items) (Brady et al., 19 97). Each item on the FACT B contains one sentence and participants are to rate how true each item is for her on a 0 4 Likert scale ranging from not at all to very much. The FACT B has been recommended for use in research and clinical practice due to its strong psychometric properties (Brady et al., 1997). Internal consistency for the FACT ( .90). Alpha coefficients for the FACT B subscales ran ged from acceptable .63 for the Breast Cancer .86 for the Functional Well Being subscale). Test retest reliability over a period of three days to one week was also high; the FACT B total sco re correlation coefficient was .85 (Brady et al., 1997). The FACT B measure was also found to be sensitive to change, as assessed by physician rated performance status ratings and scores on a measure of functional living among cancer patients (Brady et al., 1997). Convergent validity was demonstrated through high correlations with a simi lar measure of functional living for cancer patients ( r = .87, p < .01) (Brady et al., 1997). Alternatively, divergent validity was established by the relatively small correlations between the FACT B and a social desirability scale, as well

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38 as between the FACT B subscales. An important strength of the FACT B is its ability to discriminate between physical and psychosocial well being in breast cancer patients. The Functional Assessment of Cancer Therapy General (FACT G) measure is the basis of several more specific measures focusing on different types of cancers. For example, the FACT B contains the same core items as the FACT G (physical well being, social/family well being, emotional well being, and functional well being), with the addition of the 10 add itional concerns items specific to having breast cancer. Cella and colleagues (1998) t ranslated the FACT G and five specific subscales, including the breast cancer subscale, from English into Spanish using a forward backward forward translation procedure, were carefully reviewed by bilingual/bicultural experts, and tested with a sample of Spanish speaking oncology patients. The FACT B was successfully translated into easily understandable wording and all but one of the items were perceived as culturally r elevant. The culturally irrelevant item focused on death from illness; an additional item regarding the progression of illness was added. Initial validation studies indicated that psychometric properties of the Spanish FACT B were similar to those of the original English version, and researchers concluded that the FACT G and disease specific subscales are equivalent enough to the English version for use in clinical research and practice (Cella et al., 1998). Functional Assessment of Chronic Illness Therap y Spiritual Well Being Scale ( FACIT SP ). being, participants were FACIT SP (Peterman, Fitchett, Brady, Pharm, & Cella, 2002). Similar to the FACT B, the items of FACT SP are rated on a 0 4 Likert scale of how much each statement is true for the

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39 patient, ranging from not at all to very much FACIT SP meaningfulness of life and peace. The remainder of the FACIT SP was not administered, as it contains items identical to the FACT B measure. The Faith and Meaning/Peace subscales, which that was administered demonstrated good psychometric properties among a sample diverse with regard to age, ethnic background, type of cancer, and prognosis (Peterman et al., 2002). The sample also consisted of English and Spanish speaking participants; approximately 42% of the sampl e chose to complete the FACIT SP in Spanish. With regard to reliability, each subscale had good internal consistency (Meaning/Peace .88). Evidence of convergent va lidity was demonstrated through moderate to strong correlations between FACT Sp and FACT G subscales. The total FACT G and FACIT SP demonstrated a correlation of .58. Additional evidence of convergent and discriminant validity was established through cor relations in the expected directions with other measures of mood, spirituality, and religion. Peterman and colleagues (2002) recommend the FACIT SP for assessing spirituality across a wide variety of individuals with different spiritual or religious belie fs. Brief Symptom Inventory 18 (BSI 18). The BSI 18 consists of 18 items that measure general distress and screen for psychiatric disorders (Derogatis, 2000 ). Each of the 18 items consists of one sentence and responses are indicated on a 0 4 Likert scale This measure yields Depression, Anxiety, and Somatization subscales, in addition to a general measure of overall distress. The domains assessed by the BSI 18 were each .8 4)

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40 BSI 18 is a briefer version of the original Brief Symptom Inventory (BSI), and scores on the BSI 18 strongly correlate with scores from its longer predecessor ( r > .90) (Derogatis, 2000). Galdn and colleagues (2008) conducted a study to further the validation of the BSI 18 among Spanish breast cancer patients and found good psychometric evidence. Internal consistency coefficients reported by Derogatis (2000) were slightly higher than th ose found in a sample of Spanish breast cancer patients; however, among this population, Galdn et al. (2008) concluded that the BSI 18 demonstrated good internal consistency for all scales: Somatization ( .72), Using confirmatory factor analysis, Galdn et al. (2008) also reported that the three factor model was a satisfactory fit to the data obtained from their sample. These researchers conclude that the BSI 18 should be breast cancer patients (Galdn et al., 2008, p. 538). Because this measure is copyrighted, it is not included in the appendices. Perceived Efficacy in Patient Physici an Interactions (PEPPI). To assess patient efficacy in communicating with their medical providers, the PEPPI was also administered (Maly, Frank, Marshall, DiMatteo, & Reuben, 1998). This brief measure consists of just five items focusing on various aspec ts of patient provider communication. Consistent with Klooster and colleagues (2012), patients were provided with response options ranging from 1 to 5 ( not confident to very confident ), with total scores on this measure ranging from 5 to 25. This measure was originally validated among a sample of older adults (Maly et al., 1998). Internal consistency for the 5 item version was

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41 satisfactory ( .83) (Maly et al., 1998). The PEPPI was positively correlated with active coping, patient satisfaction, self r eported health, education, self mastery, and physician communication and interpersonal manner, providing evidence for convergent validity. Furthermore, this measure demonstrated discriminant validity, as PEPPI scores negatively correlated with avoidant co ping and restricted activity days (Maly et al., 1998). This measure has not yet been fully validated among Spanish speaking cancer patients; however, Maly and colleagues (1998) recommend the instrument for assessing the impact of interventions emphasizing patient empowerment, such as the current intervention. Liu et al. (2009) included the PEPPI in a study on the validity of self report information among low income, predominantly Latina breast cancer patients. In Liu et tained its good internal consistency when a pplied to .96). Poorer patient provider communication scores on the PEPPI were also related to less accurate reporting of cancer treatment and prognostic information, perhaps due to a lack of breast cancer related knowledge (Liu et al., 2009). The PEPPI was translated from English to Spanish by a graduate level bilingual research assistant, and was reviewed by another graduate level bilingual research assistant. Finally the bilingual Princi pal I nvestigator (Evelinn Borrayo, Ph.D.) reviewed the translation for accuracy before approving the final version to be administered to patients. Coping Self Efficacy Scale (CSE Scale). The final measure that patients were asked to complete at pre and post intervention was the CSE Scale (Chesney, Neilands, Chambers, Taylor, & Folkman, 2006). own perceptions of their coping, not his/her actual coping strategies. This measur e consists of 26 brief items, and participants rate how confident they are with regard to

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42 each statement on a scale of 1 to 10 ( cannot do at all to certain can do ). Among a sample of adults suffering from chronic illness, exploratory and confirmatory fact or analyses identified three factors: problem focused coping, stop unpleasant emotions and thoughts, and get support from friends and family (Chesney et al., 2006). These factors are similar to the distinctions between emotion focused coping, problem focu sed coping, and social support, all of which are important concepts in CBT. Internal consistency was for get support from friends and family to .91 for use problem foc used coping and stop unpleasant emotions and thoughts. A key advantage of the CSE Scale is that improved coping self efficacy has been found to predict greater psychological well being and less overall psychological distress (Chesney et al., 2006). Altho ugh this measure has not yet been validated with Spanish speaking individuals, it is still an important measure to with the many stresses associated with breast canc er diagnosis and treatment is a central goal of the intervention. This measure was chosen due to its comprehensive coverage of different types of coping, as well as its short, simple item structure and Likert response format. A graduate level, bilingual research assistant translated the CSE from English into Spanish; this translation was carefully reviewed by another graduate level bilingual research assista nt. Finally, the bilingual Principal I nvestigator reviewed the CSE translation for accuracy before approving the final version to be administered to patients. Exit survey. In addition to the measures listed above that were administered both pre and post intervention, feasibility data was also gathered from patient exit survey s after their last counseling session. The patient navigator administered the exit survey s in

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43 order to reduce participant response bias. She also administered the post intervention questionnaires when necessary. This exit interview captured the process of the intervention and focus ed on patient perspectives on the feasibility and acceptability of the intervention Specifically, the exit survey assessed the intervention content, quality and usefulness of the psychoeducational materials, relevance and usef ulness of the assessment measures, intervention delivery, and patient interest in the program. With regard to acceptability of the intervention content, patients were asked to provide feedback on what they perceived to be the most and least helpful topic s discussed. Patients were asked if they felt that any important topics related to their breast cancer experience were left out of the intervention. Finally, patients were asked if there were any specific exercises or techniques that were especially he lpful during their participation in the intervention. As previously mentioned, patients were provided with various psychoeducational materials in this intervention, including short vignettes on session topics, the Understanding Breast Cancer booklet ( Lo que debe saber sobre el cncer del seno) (Krames Patient Education, 2011) and the Questions to Ask Your Doctor About Breast Cancer pamphlet ( Preguntas para el mdico acerca del cncer de seno ) (Susan G. Komen for the Cure, 2008). In the exit survey accep tability of the vignettes was assessed by asking patients if reading and reflecting on the vignettes before their counseling sessions was helpful, as well as if they felt like they could relate to the characters portrayed in the vignettes. Patients were a lso asked for feedback regarding the breast cancer booklet and communication pamphlet to assess the accessibility of these

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44 materials and to determine if they provided information that patients perceived as useful during breast cancer treatment. The exit survey questions about the feasibility and a cceptability of the measures were especially important, as larger future controlled studies will need solid, informative measures to determine efficacy/effectiveness of a counseling intervention for Spanish speak ing breast cancer patients. First, patients were asked to provide their opinion about whether or not the measures captured the important aspects of their breast cancer treatment experience. The exit survey also provide d useful feasibility information, as patients were asked if there were any confusing items or measures, or if they felt uncomfortable responding to any of the assessment questions. As previously noted, Spanish speaking breast cancer patients have significant psychosocial needs, yet often f ace significant barriers accessing treatment. This intervention attempted to ease the impact of some of those barriers by allowing a flexible combination of in person and telephone counseling. During the exit survey patients were asked if those considerations were ben eficial to them and if they had any additional suggestions regarding how intervention delivery could be made even more feasible. Additionally, the exit survey gather ed patient opinions about how feasible and acceptab le it was for them to begin and end their participation in the intervention along their cancer care continuum. One of the most important topics included in the exit survey was patient interest in the intervention. The current counseling program was design ed to maximize patient acceptability and to be as useful as possible to Spanish speaking breast cancer patients, taking into account the unique cultural and linguistic needs of this population. The exit

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45 survey was designed to allow patients to provide inp ut on whether or not meeting with their counselor on the same day as breast clinic appointments reduced barriers and made it more feasible for them to attend their sessions or not. The exit survey was also designed to gather detailed information about pat ient motivations for attending counseling sessions, as well as what barriers prevented them from being able to do so. The goal of the exit survey overall was to gather more detailed information regarding ility and acceptability of the intervention to inform the development of other, larger programs for Spanish speaking breast cancer patients. Analysis The evaluation of the feasibility and acceptability of the intervention addressed psychoeducational materials, assessment measures, delivery of psychological services, and patient interest and ability to participate. To comprehensively assess these various domains, project records and direct input from patients were utilized to evaluat e the program. Data from the pre and post interven tion assessment instruments were also assessed. Results from both quantitative and qualitative analyses were compared to determine if results indicate d similar conclusions or if the data sources contradi ct ed each another. Project Records Project records provided information about the feasibility and acceptability of the intervention. In order to assess patient interest in the program and ability to participate in the intervention, initial participation r ates of eligible women approached for the study and

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46 intervention retention rates were calculated. Reasons for non participation in the study were documented. Additionally, project records were used to provide information regarding the delivery of the inte rvention. Descriptive statistics (means, ranges, and standard deviations) were calculated in SPSS Version 22 for the total number of sessions that patients participated in, the number of live sessions attended, the number of telephone sessions completed, and the length of both live and telephone sessions. These indicators provide d information regarding the feasibility and acceptability of each of the delivery me thods (in person and telephone), as well as the feasibility and acceptability of using a combin ation of both delivery methods. Greater use of a particular delivery method (or combination of delivery methods) indicate d greater feasibility and acceptability of that method. Participant attendance rate was calculated from project records by considerin g the number of sessions patients attended compared to the total number of sessions sch eduled. Participant attendance wa s considered an indicator of feasib ility and acceptability, as it reflect s previously described exit survey provided more detailed information regarding whether or not patients felt the intervention was acceptable to them, as well as whether or not it was feasible for th em to participate. Finally, project records revealed how many intervention patients were able to complete all assessment measures independently compared to how many required the assistance of the therapist to fill out the questionnaires. This information helped determine how practical the measures were when used with Spanish speaking breast cancer patients, and if the use of these measures would be feasible in other intervention studies with a similar target population.

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47 Baseline and Post Intervention Meas ures Assessment i nstruments. A ll patients were administered a socio demographic questionnaire before the intervention. Descriptive statistics, including means, ranges, standard deviation s, frequencies, and percentages, were calculated as relevant to better understand the patient participant sample in terms of general demographic information, cancer diagnosis and course of treatment, and level of acculturation. All descriptive statistics were calculated using SPSS Version 22 Patients were also ask ed to complete the FACT B, FACIT SP BSI 18, PEPPI, and CSE Scale at baseline and post intervention. Descriptive statistics, including means, range, and standard deviations were calculated in SPSS Version 22 for each assessment instrument at baseline and post intervention. A Wilcoxon Signed Ranks Test was conducted to assess differences between baseline and post intervention scores for each assessment instrument. This statistical test was chosen because it is a nonparametric test and does not assume norm ality. Formal significance testing to assess for pre and post intervention differences was not conducted due to the limited sample size and lack of statistical power. P values and effect sizes are reported. The present analysis wa s primarily designed to identify major outcomes for further testing in future randomized clinical trials. Intervention exit s urvey All exit survey s were conducted by a bilingual female patient navi gator rather than by the study therapists. These interviews were audio recorde d for later transcription, translation, and analysis. Exit survey s were transcribed and translated by a bilingual, trained undergraduate research assistant; each transcript was independently double checked for accuracy by another bilingual, trained gradua te

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48 research assistant. Ethnographic content analysis (Altheide, 1987) was used to extract important themes from the translated exit survey transcripts. Ethnographic content analysis is a reflexive process that allows themes to emerge during the data anal ysis process (Altheide, 1987). One of the primary benefits of using this reflexive approach of continual discovery is that key themes are less likely to be overlooked than when using other forms of analysis, such as quantitative content analysis (Altheide 1987). was used to guide the process of ethnographic content analysis in order to capture the important values, beliefs, attitudes, and emotions that patients express in their exit survey s. Although Krippendorff is generally used for quantitative content analysis, he note d The analytic steps, as specified by Krippendorff (2004) consist of (1) u nitizing or categorizing (2) recording or coding (3) reducing (4) inferring and (5) narrating In the first step of unitizing or categorizing to distinguish meaningful segments of text and assign these segments to commo n themes. The researchers carefully attend ed to the context in which text segments appear in the transcripts in order to make inferences about the meaning of messages and to identify key themes. The s econd step of analysis involved the development of a c oding scheme, which allowed for examination of the text for very specific data. To ensure that the extracted themes were relevant to the topic of investigation, the coding scheme wa s directly guided by the research questions. Once the coding scheme was d eveloped, the themes were then reduced into broader categories, making the data more organized and manageable. The researchers then made inferences about the meaning of the data within

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49 rs narrate d the data, meaning that they presented the results in a manner that is understandable to others. The final results are relevant themes, shared in a narrative format, that address the research question s. The Principal Investigator has extensive experience in content analysis and trained and supervise d three graduate research assistants and two undergraduate research assistants to conduct the analysis following the steps outlined above. Each research assistant began data analysis by independentl y reviewing the same interview transcript, noting meaningful segments of text, and creating short labels to capture the meaning of text segments ( unitizing and sampling t he data). Research assistants then me t as a team to discuss the meaningful segments o f texts and labels ( codes ) that were created to summarize their meaning. Based on the questions posed in the patient exit survey the codes were then organized and reduced into broader categories. The research team worked on this process until a consensu s wa s reached regarding the labeling and categorization of the data for the first interview transcript. The research team members then split into smaller groups to analyze the remaining transcripts. First, transcripts were independently unitized, sampled coded, and reduced Once these steps were completed, group members compared their analyses and work ed towards a consensus. The entire research team then met as a whole in order to discuss new codes, answer questions, or resolve discrepancies that occurred between research assistants. Each remaining exit survey transcript was analyzed using the process detailed above. The final two steps of data analysis, inf erring and narrating, were completed in groups after each transcript was categorized, sampled coded and reduced Group members collaborate d to create sentences that explain the codes; these sentences elucidate d the

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50 underlying themes identified in the te xt. These brief explanations were discussed among the entire research team; again, any questions or discrepancies among the research assistants were addresse d. Once the entire team reached consensus about the meaning of each of the identified themes, the research assistant groups embarked on the final stage of analysis: narration. In this step, the research assistants elaborated on each theme, providing a detailed explanation of each individual theme. To best illustrate the final themes, relevant patien t quotes were incorporated into the final narration of results.

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51 CHAPTER III RESULTS Participants Nine Spanish speaking Lat ina breast cancer patients participate d in this study. Participant a ges ranged from 39 to 74 years and approximately half of the women in this study were in their 40s ( M = 47.33, SD = 11.09). Participant ages were as follows: 39, 40, 40, 41, 44, 45, 50, 53, and 74. Seven out of nine of the women in the sample were unemployed. Six of the patients relied on the Colorado Indigent Ca re Program (CICP), which is not a form of insurance, but rather a program that provides discounted health care services to low income patients. One patient reported having Medicaid coverage, and two others reported other sources of health insurance. Two women reported household incomes of less than $1,000 per month, five women reported household incomes of $1,001 to $2,000, and two women reported household incomes of $2,001 to $3,000. Six of the women in this study were married, although one woman was ne ver married, one was divorced, and one was widowed. Overall, these women had lived in the United States between 7 and 27 years ( M = 14.67, SD = 6.46) and all reported receiving their education in Latin America. Eight out of the nine patients were from Me xico, although one reported that she was originally from Guatemala. Overall, the patients in this study had a low level of educational attainment, as seven out of the nine women reached grade school level education. One participant reported that she neve r received any formal education, and another reported a high school level education. Patients diagnosed with all stages of breast cancer were represented in this study, although medical records indicated that the majority of women were diagnosed in stage I I

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52 (3 women) or stage III (3 women). One patient was diagnosed at stage 0, one patient at stage 1, and one patient at stage IV. Interestingly, five out of nine of the patients in the study incorrectly reported to their therapist their cancer stage at diagn osis when compared to the stage at diagnosis stated in their medical records. In terms of treatments received, all patients who received treatment at Denver Health had surgery and radiation, and most also had chemotherapy (seven out of nine women) and bio logical therapy (seven out of nine women). Treatment data was unavailable for the patient who was diagnosed with breast cancer at Denver Health and transferred to another institution for her treatment. The women who participated in this study were overall more acculturated to their culture of origin than to the dominant U.S. culture. All of the women who participated in the study preferred to speak Spanish. Five out of nine of the women who participated in this study spoke only Spanish, whereas the remai ning four women reported speaking Spanish better than English. Similarly, six out of nine reported that they could read only Spanish; three reported that they could read Spanish better than English. Eight out of nine women reported spending all of their early life in Latin America, although one woman noted that she spent about an equal amount of time in Latin America and the United States while growing up. Four out of nine women reported that their friends were almost all of Hispanic origin and four wome n said that their friends were mostly of Hispanic origin. One woman described having about an equal number of Hispanic and non of their Hispanic origins.

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53 Summary of Intervention Intervention D elivery The original intervention protocol called for five to eight weekly sessions, lasting from 30 minutes to one hour. The intervention sessions were designed to take place the same d ay as breast clinic appointments, and a combination delivery method of in person and telephone sessions was specified. Overall, the intervention was delivered as intended with two modifications. First, sessions did not always occur on a weekly basis for a few key reasons. Patients often missed appointments, resulting in gaps in treatment. As discussed under Research Question 4 below, the overall attendance rate for in person sessions as 86.4%. Furthermore, intervention sessions were sometimes spaced fu rther weekly sessions would not have been sufficient to follow a patient through a lengthy course of surgery, chemotherapy, and radiation therapy. When this was the case, therapists and patients tended to meet around the time of transitions in treatment and check in with brief telephone calls in between these transitions to assess whether or not additional in person sessions were necessary. The second modification of the intervention delivery was the combination delivery method. Overall, the telephone sessions were often not feasible for several reasons, ranging from patients not having reliable access to telephones, telephone connection problems, patients being distr acted while on the phone, and a lack of interpersonal connection. Due to these issues, two thirds (six out of nine) of the women in the intervention did not receive any telephone sessions. Three patients had at least one telephone session, but overall, t he intervention was delivered in person. Despite the

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54 issues with telephone sessions, brief telephone check in calls were useful for connecting with patients between treatments and during off weeks, when patients could be reached in this manner. Interventi on To pics The original intervention protocol called for the inclusion of several required topics (i.e., introduction, health education, communication, coping with treatment side effects, culture/spirituality, self care) as well as optional discussions abo ut how to cope with distress (i.e., depression and anxiety) and body image concerns. Although the initial intervention design called for a focus on one topic per week, this model was generally not feasible in practice. Patients often discussed several to pics within one session, and topics were often revisited throughout the course of the intervention as appropriate and necessary. For example, coping with treatment side effects and communication with providers were often revisited at each transition from one type of treatment to another. Discussions about spirituality and culture did not take place during just one therapy session; rather, these topics in particular were infused with nearly every other discussion topic addressed in the intervention. Spiri tuality and culture were often emphasized in discussions about coping with distress and communication in particular. Additionally, patients often wanted to discuss other stressors aside from their cancer experiences with their therapists, such as family a nd work concerns. These concerns were generally distress, maintain appropriate self care, and adhere to cancer treatment. Furthermore, it was not always feasible to ad dress health education in the introductory session due to time constraints. Oftentimes, an hour session was not enough time to adequately orient

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55 patients to the intervention and also accomplish other tasks such as administering the socio demographic quest ionnaire, other pre intervention measures, gathering basic intake information, and discussing health education matters. Table 1 illustrates the order in which patients completed the intervention topics. This table captures only the major topic(s) discussed during each session; patients often discussed other topics in the same sessions.

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56

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Running head: ACCEPTABILITY AND FEASIBILITY OF AYUDA 57 Psychoeduca tional M aterials Although the original intervention protocol included having patients reflect on vignettes for each of their sessions. Project records and case notes documented that gaps of time during therapy often occurred for several reasons, such as frequent patient cancellations, no shows, and waiting for patients to finish one medical treatment and begin another. In addition to len gthy gaps in treatment, it was also often difficult to treatments ( e.g., starting chemotherapy) a nd health status and the emergence of other unexpected life events To best a ccommodate patient needs, it was necessary for the therapists to remain f lexible to patient needs as those arose. Thus, it was oftentimes not feasible to provide patients with a vignette on a specific topic to reflect upon at home and then discuss at the next session, especially as time between sessions increased Another important obstacle to implementing the vignettes was ; therefore, reading the vignettes as homework was not feasible without assistance for some patients Although the vignettes were hypothesized to help the women begin to discuss their own thoughts and feelings in a culturally relevant manner, all of the women who participated in the intervention demonstrated a willingness to openly discuss their own experiences wi thout needing to begin with the vignettes. Due to the various barriers to using the vignettes, they were only used as necessary and relevant, sometimes as homework and occasionally in session. Not all patients received vignettes due to their lack of feas ibility in the intervention.

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58 The use of the other psychoeducational materials during the intervention was also modified from the original intervention protocol. Although the booklet Understanding Breast Cancer ( Lo que debe saber sobre el cncer del seno ) ( Krames Patient Education, 2011) was initially intended for use only in the introductory session to cover basic cancer and health education topics, therapists and patients referred back to this booklet several times throughout the intervention to help revie w and explain various topics that became relevant throughout breast cancer treatment. In addition to basic health education, this booklet was often used during discussions of several different intervention topics. For example, the booklet provided a usef ul review of the various treatments that patients would undergo, and also provided information about the treatment side effects that they might experience. This information was especially useful during discussions about coping with side effects as well as communication with providers, as the materials had a tendency to elicit additional patient questions for providers. Similarly, the pamphlet Questions to Ask Your Doctor About Breast Cancer ( Preguntas pa ra el mdico acerca del cncer de seno ) (Sus an G. Kom en for the Cure, 2008) was also used throughout the intervention. It was initially intended for use during a single session focused on communication to help patients devise effective strategies for improved patient provider communication, such as writing down questions before appointments and recording provider responses to help patients keep track of information. However, because the pamphlet contained separate cards for each topic (e.g., surgery, chemotherapy, radiation therapy), patients and their ther apists tended to use individual cards as they became relevant throughout the intervention. For example, a patient may have used different cards from this pamphlet three times during the course of the

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59 intervention, as they related to her specific course of treatment. The cards were useful as a way for patients to assess their own knowledge about the given topic, as they could use them to assess their understanding with the suggested patient questions for providers. This exercise often elucidated gaps in k nowledge and also sparked new patient questions. As initially planned, the cards in this pamphlet were also used as a strategy to help patients remember their questions and record provider responses during appointments. Table 2 illustrates the key change s that were made to the original intervention protocol.

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60 Table 2 Modifications to Original Intervention Protocol Intervention d omain Original p rotocol Modifications Intervention d elivery Five to eight weekly sessions. Sessions ~ 30 min. to 1 hr. Sessions same day as breast clinic. Combination in person and telephone sessions. Sessions did not always occur weekly. Telephone sessions were often not feasible; majority of intervention was conducted in person. Intervention t opics Required a nd optional topics. One major topic of discussion per week. Multiple topics discussed in each week. Spirituality and culture were generally infused throughout intervention. Same topics revisited during course of intervention. Inclusion of additional family and work related stressors in discussions (as they affected coping and cancer treatment). Often not enough time to discuss health education in introductory session. Psychoeduc ational m aterials Vignettes as homework to introduce session topics. B ooklet: Understanding Breast Cancer provided in health education session. Pamphlet: Questions to Ask Your Doctor provided in communication session. Vignettes often not feasible; only some patients received vignettes. Booklet and pamphlet both used throughout the course of the intervention as opposed to during single sessions.

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61 Research Questions Findings Research Question 1 How did Spanish speaking Latina breast cancer patients perceive the content of the AYUDA intervention? Anxiety body image, communication, coping with si de effects, and family were noted as most helpful topics. As documented in therapist comments and case notes patients frequently chose to discuss cultural (e.g., importance of family) and spiritual topics during their sessions. None of the women identified any topics that were missing or that were not useful to them, although many patients wanted to address life events and stressors besides breast cancer during their sessions. The majority of patients agreed that talk ing to the therapist in person (versus over the phone) was the most useful method utilized in the intervention, and all patients reported good rapport with their therapists. Specific relaxation exercises ( e.g deep breathing and guided imagery) and psych oeducational materials were also noted to be particularly helpful. Most helpful t opics. What did these patients identify as the most helpful topics of the intervention? Overall, the women in this study reported a high degree satisfaction with all of the topics included in the intervention. Several women reported that all yes, there were Communication was specifically described as one of the most helpful topics nication helped me a their immediate and extended family members. Some women, especially those with

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62 young children, initially struggled with the decision of whether or not they should share their breast cancer diagnosis with their children, and if so, how they should tell them. The intervention therapists helped women explore these decisions and formulate strategies to best communicate news about their cancer diagno sis to their loved ones. Furthermore, although most women did not initially report communication difficulties aside from language barriers with their providers, several of them recognized significant gaps in understanding their cancer stage, course of tre atment, and provider recommendations during their counseling sessions. These gaps in knowledge helped women identify patient provider communication as a priority. For example, five of nine women incorrectly reported their cancer stage when they began the intervention. One but that she was supposed to undergo chemotherapy and radiation. After some brief psychoeducation about cancer staging and typical treatments, t he patient and therapist worked together to identify questions she wanted to ask her medical team. When the patient returned to her next counseling session, she reported that she talked with her doctor and learned that her cancer was stage III. Several patients also identified anxiety as one of the most beneficial topics in the intervention. For example, when asked about the most helpful topics, one patient replied, among the patients in the intervention. Guided imagery was especially useful for one woman, as she explained utilizing this technique to relax while she received her chemotherap y treatments. Therapists did not provide already existing guided imagery

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63 scripts for patients; rather, they helped the patients create their own scenes, rich with detail from all senses. Some women chose to include important personal and cultural aspects to their guided imagery scenes. For example, one woman chose to imagine an area in Mexico where she spent much of her childhood. Another woman incorporated the importance of family into her image; she chose to focus on a playground where she used to tak e her children to play when they were younger. Therapists also encouraged patients to explore and practice additional methods of relaxation. Many women explained that spiritual activities, such as reading the Bible, praying, or attending church services had a calming effect. Another woman explained that she felt less anxious and more hopeful after reading passages in a book containing poems and inspirational statements. In session, she recommended that other Latina breast cancer patients also read simil ar material to help assuage anxiety and instill hope. Some cognitive behavioral techniques, such as helping patients reframe distressing thoughts and challenge catastrophic thinking, were also beneficial for patients in the intervention. Body image was a lso reported to be one of the most helpful topics; patients explained that talking about changes or loss of breasts as well as hair loss was important. not the only pers Specifically, helping women explore what it meant to be a Latina woman and what she considered her most important roles in life seemed particularly useful in helping women cope with physical changes. Several women emphasized familial roles, especially the importance of making sure to adhere to treatment recommendations to maximize their chances of surviving cancer to be able to raise their children. Oftentimes, body image

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64 concerns were discussed alongside communication, as some women chose to discuss their concerns with their spouses or loved ones. When women disclosed their body image concerns to their spouses, they overwhelmingly received positive, supportive comments that emphas physical characteristics. Additionally, many women explained how wearing a wig or a prosthetic breast helped them combat body image issues. The patient navigator assisted many of these women in attaining wigs and prostheses, and the patients often expressed great appreciation for this assistance. Similarly, one women described how choosing to dress fashionably, even in the midst of cancer treatment, made her feel better emotionally because s he felt more like her usual self. Overall, the majority of patients found it helpful to work with their therapists to find strategies to cope with body image concerns. A number of women also reported that discussing coping with side effects was particular particularly its treatments, was also reported to be a key topic of the intervention. These two topics often went hand in hand. Most women in the intervention had limited knowledge about treatment modalities and often held misconceptions about the process of treatment. Therapists often revisited the booklet Understanding Breast Cancer (Krames Patient Education, 2011) across several sessions with patients to explain topics ranging from cancer staging to surgery to chemotherapy and radiation. Patients reported feeling more prepared and less anxious for their treatments once they understood them better. Patients also seemed less likely to experience high levels of anxiety once they understood the common side effects of treatment. For example, one woman developed a

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65 seroma following her surgery. She was able to calmly discuss this issue with her therapist, referring to the page in the booklet that they had previously reviewed together. The topic of treatment side effects was also often discussed alongside communication strategies. For example, some women maintained employment during their breast cancer treatments and worked with their therapists on strategies to communicate their health status and negotiate alternative work tasks with their employers. were among the most helpful topics when queried during their exit interviews. Furthermore, during the intervention, several women were asked to reflect on what it meant to be a Latina with breast cancer. None of them were able to identify how being Latina impacted t heir experience, perhaps due to the fact that the participants generally highly identified with their culture of origin and had low levels of acculturation to the dominant U.S. culture, making it difficult for them to explicitly identify cultural influence s. It is important to note that when asked which topic she liked the most during her part of the culturally sensitive intervention, family was often discussed throug hout the therapy sessions and was not limited to one culture and spirituality module. Family was discussed in several different contexts and within several intervention topics. For example, familial conflicts were sometimes cited as stressors, whereas ot her times, family was described as an invaluable source of support throughout the difficult experience of cancer diagnosis and treatment. Many women emphasized the importance of family in their lives, and also explored how their cancer experiences affecte d their role within the

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66 family. For example, those with small children especially reflected on how adhering to treatment was a priority so they could be around to see their children grow up. The topics related to family were frequently covered during com munication, body image, and depression/anxiety discussions in particular. Additionally, most patients spoke at length about their faith during several of their therapy appointments. As noted above, faith based activities were some of the most commonly pra cticed relaxation methods among the women in the study. Some women reported a deepened sense of faith and stronger relationship with God as a benefit of going through the difficult experience of cancer. For example, one woman explained how she always con she never felt a close relationship with God before her cancer diagnosis. She said that through more frequent prayer and church services, she now feels that God is there for her to he God would help heal her, as long as she participated in her treatment plan and did her part to overcome the disease. Overall, case notes and project records clearly indic ate that discussions about culturally relevant topics like family and spirituality were key topics that most women chose to revisit throughout the course of the intervention. Participants were also asked to rate the usefulness of each intervention topic d uring their exit interviews, using a 1 through 5 Likert scale (1 = not at all useful 3 = somewhat useful 5 = very useful ). Notably, most women were able to provide adequate responses for the majority of topics queried; however, some participants require d clarification from the interviewer to use the Likert ratings. The missing data in this

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67 section generally reflects instances when participant responses were not able to be determined according to the Likert scale options. Regarding the topic of breast cancer and its treatment, seven of nine women described it as very useful (5) whereas one woman rated it as somewhat useful (3). One woman did not provide a clear response when asked about that topic. Six of the nine women also rated communication as a v ery useful (5) topic; an additional two women rated it as useful (4). Again, one woman did not provide an adequate Likert scale response when queried about the usefulness of communication as an intervention topic. Four women rated coping with treatment s ide effects as very useful (5), two women rated this topic as useful (4), and one woman reported that it was somewhat useful (3). Two of nine women did not provide a clear rating for this topic. Six of nine women rated the culture and spirituality topics as very useful (5); two rated it as useful (4), and one rated it as somewhat useful (3). Seven of nine also agreed that discussing self care topics, such as diet, exercise, and making time for oneself was very useful (5). One woman rated the self care t opic as useful (4), and another rated it as somewhat useful (3). Regarding depression and anxiety, five women reported that these topics were very useful (5), three reported that they were useful (4), and one rated them as somewhat useful (3). Lastly, si x of nine women rated body image as a very useful (5) topic to discuss. One woman rated it as useful (4) and another woman rated it as somewhat useful (4). One woman also rated body image as not useful (2). Overall, women rated the topics of breast can cer and its treatment, coping with treatment side effects, culture and spirituality, self care, and depression and anxiety as somewhat useful (3) to very useful (5). Communication received the most favorable

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68 reviews; all eight patients who rated this topi c said that it was useful (4) or very useful (5). Body image generally received somewhat useful (3) to very useful (5) ratings, although one woman rated it as not useful (2). These results can be found on the following page in Table 3

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69 Table 3 Patient Ratings of How Useful Intervention Topics Were to Them Intervention t opic Patient r atings # of p atients (n = 9) Learning about breast cancer and its treatment Some what u seful Very u seful Missing r esponse 1 7 1 Communication skills with the doctor or family Useful Very u seful Missing r esponse 2 6 1 Coping with side effects of treatment Somewhat u seful Useful Very u seful Missing r esponse 1 2 4 2 Culture and spirituality Somewhat u seful Useful Very useful 1 2 6 Self care, including diet, exercise, making time for oneself Somewhat u seful Useful Very u seful 1 1 7 Depression and anxiety Somewhat u seful Useful Very u seful 1 3 5 Body image Not u seful Somewhat u seful Useful Very u seful 1 1 1 6 Least helpful t opics. What did these patients identify as the least helpful topics of the intervention? When asked about which intervention topics they perceived as the least helpful, none of the women identified specific topics. Several of the women clarified that there were not any topics that were not useful. For example, when asked

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70 were generally positive, with all topics except for body image rated as at least somewhat useful (3 ) by all women. Body image was the only topic to receive a not useful (2) rating by one woman. All of the other participants gave body image a positive rating and several described it as one of the most helpful topics in the intervention. The therapists agreed that there were not any topics that were not useful in the intervention. However, the therapists identified that culture and spirituality were not as useful to discuss as a specific module topic, but rather, were most helpful when infused througho ut the entire intervention. Missing t opics. What topics, that were not included in the intervention, did these patients identify would have been helpful to discuss during breast cancer treatment? When asked directly about additional topics that they would have liked covered in the intervention, none of the participants suggested additional topics to include. One patient provide suggestions about additional topics to i nclude, case notes and project records indicate d that many patients wanted to discuss other life events and stressors besides breast cancer in their sessions. For example, one patient wanted to discuss parenting strategies for her special needs child, ano and yet another about her impending divorce and financial difficulties. Still, several more women wanted to talk about other family and work matters. Many of the women in the study experienced several si gnificant stressors in addition to their breast cancer diagnosis and treatment, and sometimes they reported more distress related to these other stressors than to their breast cancer. In this intervention, therapists generally attempted to

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71 address the iss ues that were not specifically about breast cance r as they affected the overall coping skills and ability to adhere to breast cancer treatment Most helpful m ethods. What did these patients identify were the most helpful techniques (or methods) used during therapy? When asked about the most helpful methods in therapy, participants overwhelmingly reported that talking with the therapist was the most beneficial aspect of the intervention. For example, one woman explained talk to the girl, the psychologist. She gave me a lot of good of t he women interviewed described a positive rapport with their therapists. When asked her, All of the women in the study seemed willing to openly discuss their own experiences through breast cancer diagnosis and treatment and many of them repeatedly expressed gratitude for having a therapist to listen to their concerns and support them during the process of breast cancer treatment. Some patients also described relaxation techniques, like guided imagery, as particularly helpful techniques in the inte using deep breathing and guided imagery tec hniques in their daily lives, and also during particularly stressful times throughout treatment, such as the patient described above who

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72 used guided imagery while receiving chemotherapy. Although only one patient reported that the pamphlets were the most useful aspect of the intervention for her, therapists and patients often referred to both the Questions to Ask Your Doctor About Breast Cancer pamphlet (Susan G. Komen for the Cure, 2008) and Understanding Breast Cancer (Krames Patient Education, 2011) boo klet throughout the intervention These materials were used to address several topics that often resurfaced during the intervention, including general psychoeducation about breast cancer and its treatment, coping with side effects, and communication with providers. Another woman noted how the vignettes intervention is discussed i n detail below. Research Question 2 How did Spanish speaking Latina breast cancer patients perceive the psycho educational materials provided in the AYUDA intervention? T he use of vignettes in the intervention was not always feasible. Overall, the use of vignettes as homework as initially planned was not feasible due to changing patient needs, low literacy levels, and patients forgetting to read and reflect on them as homework. Cancelled appointments and gaps in treatment also contribu ted to difficulties using the vignettes as originally intended. However, when patients did read and reflect on the vignettes, their reflections tended to be thoughtful and personalized responses to the stories. Some patients received several vignettes, wh ereas others did not receive any. Most of the time when the vignettes were used, they were provided as homework before the next session, although they were occasionally introduced at the beginning of the session to help intr oduce the session topic

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73 The m ajority of women who received at l east one of these brief stories indicated that the vignettes were helpful. Additionally, patients generally provided thoughtful responses to the vignette reflection questions. Most of the women described feeling like the y could relate to the vignette characters, especially those focusing on body image and anxiety. Only one woman indicated that she did not relate well to the stories. Some women reported that it was helpful to read the vignettes as homework between sessio ns, whereas others explained that they used the vignettes in session or did not read them at all. Many women reported that the psychoeducational materials (booklet and pamphlet) provided in the intervention were very helpful; only one woman stated that sh e did not review them due to impaired concentration. Instead of each being used in a single module, both of the psychoeducational materials were used on an ongoing, flexible basis throughout the course of the intervention. Vignettes. According to these patients, how were the vignettes helpful to reflect on issues that commonly arise during breast cancer treatment? Several patients who learned from every story and the vignettes for body image, communication, and coping with treatment side effects were helpful. Notably, none of the patients reported that the vignettes were not helpful. During their exit interviews, patients did not specifically elaborate on how the vignettes were useful in reflecting on their breast cancer experiences. Overall, patients were able to provide thoughtful and personalized responses after they read the vignettes provided to them during the intervention. In response to the body image vignette, one woman noted how the shock and grief that the vignette character

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74 experienced after her hair loss were similar to her own reactions. This vignette seemed to hair loss and provided a segue to discussing these emotions in depth with her therapist. A different patient who had not yet experienced hair loss also benefitted from reading the body image vignette focused on this topic. The vignette was a useful intro duction to body image, and the patient proceeded to ask a series of questions and discuss her concerns about hair loss with her therapist. Yet about body image issues so th at he can empathize and treat her in a caring way. When reflecting on the communication vignette (which also contains some spiritual topics), one woman explained the importance of her faith in God, but also expanded on how her children were a major motiva tor for her to communicate with her providers and adhere to treatment recommendations to battle her illness. Overall, the vignettes provided an helped patients reflect on their own breast cancer experiences. Vignette c haracters. How much did these patients feel they could relate to the characters portrayed in the vignettes? Overall, the majority of patients who received the vignettes reported that they felt they cou ld relate to the characters portrayed in them. Some of the patients noted that the body image vignette was particularly relatable. For example, one patient explained, abou t some person that they chopped off her breast and that her husband did not want to hurt her, that moved me a lot. It moved me.

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75 think so. For example, like the chemothe rapy and hair loss. I did not cry but the her perceptions, told his wife that he no long er wanted her because when she had to go to the restroom her hair would all fall out. I liked that one a lot. Although most women felt they could identify with the vignette characters, one woman did not feel that the stories were relatable. She described that it was difficult to identify intervention seemed to empathize with the vignette characters, and were also able to use the vignette stories to address questions and/o r concerns in their own lives. As described above, several women felt a particularly strong connection to the character featured in the body image vignette. One woman asked her therapist if the vignette characters were real patients; this suggested that the vignette stories and characters were portrayed in a realistic manner that actual patients could relate to. Vignettes as h omework. How useful did these patients think it was to read the vignettes as homework before the next session? Some of the pati ents interviewed reported that the vignettes were helpful to reflect upon a given topic as homework before the next session. For example, when asked about the vignettes as homework, one patient explained that she used the vignettes in session with her therapist instead of as homework,

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76 some women read the vignettes and returned wit h their reflections, several others reported that they forgot to read the vignettes in between their sessions or that they had lost them. Psychoeducational m aterials. In what ways were the psycho educational booklets/pamphlets useful for learning more about how to deal with breast cancer? Several patients discussed the psychoeducational materials provided in the intervention; overall, patients reported that they were h elpful. One woman illustrated this perspective some patients rated the psychoeducatio nal materials they received (booklets/pamphlets) as the most useful aspect of the intervention. The patients were provided both with an Understanding Breast Cancer booklet (Krames Patient Education, 2011) and a Questions to Ask Your Doctor About Breast Ca ncer pamphlet (Susan G. Komen for the Cure, 2008) but they did not elaborate on which of these psychoeducational materials in particular was the most useful during their exit interviews. One patient described how she appreciated the illustrations in the figures and illustrations in the booklet during session to explain important concepts such as cancer staging, surgery options, chemotherapy, and radiation therapy. Although the psychoeducational materials were reported to be helpful overall, one patient described difficulty using th

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77 Although the booklet was initially intended to be used during the first session to cover general cancer psychoeducation and then given to the patients to refer to at home, the booklet was used even more frequently during the therapy sessions with patients. Due to the amount of time it typically took to go through the informed consent and introductory questi onnaires, health education was not always addressed in the first session. Rather, therapists tended to use the booklet throughout the intervention as various topics became relevant to each patient. For example, discussions about cancer staging and surger y options often occurred at the beginning of the intervention, psychoeducation about chemotherapy and helping patients cope through its side effects tended to occur in the middle of the intervention, and a detailed review of radiation often occurred near t he end of the intervention. The booklet was comprehensive and covered all of these topics and more, making it a useful resource to have on hand throughout the course of the intervention. Patients were provided with their own copy of the booklet to take h ome, and the therapists used extra copies to refer to throughout the course of the intervention. The communication pamphlet was similarly used throughout the intervention as opposed to during one communication focused session. The pamphlet contains severa l cards covering various aspects of cancer diagnosis and treatment. In the intervention, therapists and patients generally used the different cards as the various topics became e patients preferred to only be given the card covering the specific topic they were going to discuss with their medical providers, with any additional questions written on the card. Some patients said that they did not want to risk losing the entire pamp hlet, and others said that

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78 they wanted the therapist to hold onto it so that future topic cards would be easily accessible when it became necessary to discuss them. In addition to helping patients having a written record, the cards in the pamphlet also proved useful during the intervention to assess patient understanding of breast cancer and its treatment. Many women initially failed to identify any questions for their providers. However, upon re view of the questions listed in the pamphlet, therapists and patients were better able to assess gaps in knowledge and determine specific questions for medical providers. Overall, both psychoeducational materials tended to be used flexibly and repeatedly throughout the course of the intervention as opposed to discussed and distributed in specific module sessions. Research Question 3 Were the assessment instruments used in the AYU DA intervention appropriate for low literacy Spanish speaking Latina breast cancer patients? Project records were examined to determine how many of the women were able to individually complete the measures administered during the study. Several, but not all, of the women were able to complete their questionnaires without assistance. Women were also asked if they found any of the assessment items confusing or uncomfortable to answer. In addition to their exit interview responses, project records also provided further insight into whic h items the women in this study might have found difficult to understand or uncomfortable to answer. Several patients reported mild difficulty completing the measures, and records indicated that fill in the blank Likert respon s es were challenging for at l east one patient. Although patients denied that they were asked to respond to any uncomfortable items,

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79 records suggest that several women likely experienced some emotional discomfort responding to an item regarding sexual satisfaction. Measure c ompletion. How many patients were able to complete the measures individually? Overall, seven out of nine of the intervention patients were able to complete the sociodemographic questionnaire and pre and post intervention measures individually. Two of the patient s were not sufficiently literate to read and complete the measures by themselves. These patients required assistance from their intervention therapist to complete the pre intervention measures, and likely received assistance from their families or the pat ient navigator to complete the post intervention measures. Due to the length of time required to complete the measures, the majority of women completed them outside of their therapy sessions. Assessment relevance. How relevant did the patients feel that the assessments were to their experience of going through breast cancer treatment? A majority of patients agreed that the questionnaires administered at pre and post intervention captured their experiences of breast cancer diagnosis and treatment. One woman described that, women appeared to have difficulty understanding the question a bout whether or not the assessment items were relevant to their cancer experiences, as they did not clearly provide an answer to that question during their exit interviews. One of these patients, however, described the assessments as time like they would take a lot patients generally completed them outside of session whenever possible to maximize

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80 time spent discussing their experiences with the t herapist. Notably, none of the patients reported that the questionnaires in this study were irrelevant or did not adequately capture their experiences of breast cancer diagnosis and treatment. Patients did not provide any additional spontaneous feedback about the questionnaires during the course of the intervention. Confusing a ssessments. Were there any assessment measures or items that these patients could not understand or thought were confusing to them? Five out of nine participants denied experienci ng any difficulty completing the measures in this study. Four participants reported experiencing a little difficulty completing their questionnaires. For example, when asked if it was difficult for her to comprehend some of the questionnaires or specific did not provide specific examples of items they perceived to be confusing. One patient explained how she asked for measures outside of session, and it is unknown how many women asked other individuals, such as family members, for some degree of assistance. One woman did complete the majority of her questionnaires individually at home, and brought them back to session to complete. She had some vocabulary related questions about a few of the items, but after the meaning of the words was explained, she was able to complete the items without further difficulty. A review of project records indicated that one patient had difficulty understanding how to fill out the CSE when administered at pre intervention. This

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81 measure features a Likert scale response; however, each item requires the patient to fill in the blank with a number that corresponds to a Likert scale defined near the top of the measure. Instead of responding with the Likert scale numerical options, this patient wrote either yes or no in the blanks. The therapist reviewed this measure with the patient during their next session, and the patient verbally provided Likert scale numerical responses for each item. The patient did not demonstrate difficulty with any of the other Liker t scale measures administered in this study, all of which required the participant to circle a number relating to each item instead of filling in the blank. Uncomfortable a ssessments. Were there any assessment measures or items that these patients felt un comfortable answering? When asked directly during their exit interview, all nine women denied perceiving any of the assessment items as uncomfortable. However, a careful review of individual measures conducted upon the completion of the intervention sugg ested that at least some of these women might have felt uncomfortable responding to a question on the FACT B and FACIT SP regarding I am satisfied with my sex life Brady et al., 1997 ; Peterman et al., 2002 ). This questionnaire also offers the participants an option to skip that sensitive item by stating, your current level of sexual activity, please answer the following question. If you prefer not to answe r it, please mark this box Brady et al., 1997 ; Peterman et al., 2002 ). Two patients marked this response on both their pre and post intervention FACT B and FACIT SP questionnaire and therefore did not rate their sexual satisf action. One of these women explained that this question was not applicable to her because she was a widow.

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82 Two other patients skipped the sensitive question listed above on their pre intervention FACT B and FACIT SP questionnaire, but provided a response on their post intervention measure. For both of these women, the therapist was present at the administration of the pre intervention measures, but not at the administration of the post intervention measures. One possible explanation for this patt ern of responding to an item about sexual satisfaction is that they felt more comfortable completing this item in private. Another possible explanation is that the women may have felt more comfortable answering the sensitive item after they had built trus t with their therapists during the course of the intervention. Several patients left questions blank across the various questionnaires distributed both before and after the intervention, but a close review of individual measures did not reveal any additio nal specific patter n s or themes to account for these missing responses. Research Question 4 Were Spanish speaking Latina breast cancer patients interested and able to participate in the AYUDA intervention while in treatment? Overall, most of the Spanish s peaking breast cancer patients approached about the intervention were interested i n participating. Furthermore, the majority of those who decided to participate remained in the intervention for several sessions. One of the primary patient motivations to a ttend therapy sessions was to speak with the therapist, although other motivations included increased knowledge, fear, and increased well being. Several patients expanded on this topic and spontaneously described the benefits they received in this interv ention. Although many patients were interested in the intervention, many of them experienced barriers that interfered with their ability to attend appointments. Common barriers

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83 included lack of transportation, conflicting medical appointments, suffering from treatment side ef fects, and inclement weather. Despite frequent conflicts with medical appointments, p atients expressed satisfaction with having the intervention o n the same day as breast clinic. S ome patients preferred to meet with their therapist before their medical appointments whereas others preferred to meet with their therapist afterwards. Recruitment r ate. What was the intervention recruitment rate? Overall, 13 women were approached by the patient navigator for participation in the intervention study and 11 of these women agreed to take part in the intervention. Therefore, the recruitment rate for this study was 84.62%. One woman reviewed the inform ed consent with her potential therapist before choosing not to participate. She declined to provide a reason for her non participation when asked. Another woman expressed interest in the study when she was initially recruited by the patient navigator, bu t she was unable to be reached by phone to set up an appointment to review the informed consent and begin the intervention. Retention r ate. What was the intervention retention rate? Eleven women expressed interest in participating in this study and comp leted the informed consent. Two women did not return after their first appointment, which generally included the informed consent, a brief interview with the therapist, and some brief health education about breast cancer if time allowed. Nine out of elev en women (81.81%) remained in the study for at least two sessions of the intervention. Both women who dropped out of the study after the first session stated that they wanted to focus on their medical treatment for breast cancer. One of these women felt too busy with other medical appointments to also participate in the psychoeducational and psychosocial intervention, whereas the other

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84 woman described transportation barriers and a need to keep her appointments to a minimum. Two out of the nine patients who remained in the study discontinued their participation in the intervention earlier than agreed upon by the patient and therapist. One woman explained that she no longer needed the intervention because she felt she was doing well emotionally after hav ing six in person sessions and several telephone check ins. Another woman discontinued participation after having four in person sessions; this was because she could not be contacted by phone to schedule additional appointments. Notably, in her exit inte her therapist] and cited communication barriers as a reason for her discontinued participation in the study. When asked if it would have been better to have had more or less time with her the Attendance r ate. What was the attendance rate (number of sessions scheduled/number of se ssions attended)? Patients scheduled between three and eleven in person sessions ( M = 6.78, SD = 3.07) and attended between three and eight in person sessions ( M = 5.44, SD =1.51). The overall attendance rate for live sessions across all patients was 86.4%. Individual patient attendance rates varied; participants had between a 60% attendance rate and a 100% attendance rate for in person sessions. Patients scheduled between zero and five phone sessions ( M = 1.44, SD = 1.74) and completed between zero and three phone sessions ( M = .78, SD = 1.30). These telephone sessions do not include brief check ins or phone calls for scheduling purposes.

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85 Four of the patients in this stu dy did not schedule any phone sessions with their therapists; these patients conducted all of their sessions in person. The remaining five patients scheduled between two and five phone sessions. The overall attendance rate for phone sessions across all pa tients who scheduled at least one phone session varied widely, ranging from 0% to 100%, with a mean phone attendance rate of 42%. Motivations. According to these patients, what motivated them to attend the therapy appointments? Several patients describ ed how the opportunity to speak with a therapist was their primary motivation for attending appointments. For example, when asked if there was something that motivated her to come back each week, one patient said, patient elaborated on this idea and explained these ongoing, positive, supp ortive relationships also likely motivated the patients to attend their scheduled therapy sessions. Some of the women in the intervention did not have much social or emotional support outside of the intervention. For example, one woman had several small children and was in the process of getting a divorce during her cancer treatment. For other patients, the people in their support networks lived far away. learns more things women began the intervention with limited knowledge or misinformation about their cancer stage, treatment recommendations, and what each type of cancer treatment entailed. Through a comb ination of psychoeducation and support for communicating with their medical professionals, most women in the intervention gained a much better

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86 understanding of their cancers and the treatments they underwent. Fear of cancer was also reported as a motivati on to attend therapy; for example, one woman explained that it Many patients reported anxiety related to having cancer, having to undergo difficult treatments, and th e possibility of death. Anxiety was a common topic in therapy, and as already mentioned, some women thought it was the most helpful topic included in the intervention. Another woman summed up her motivation to attend therapy by describing positive well b echoed this idea by thanking their therapists after sessions and telling them that they felt better after discussing their thoughts and feelings with them. Several patients also spon taneously explained what they perceived were the benefits of intervention participation. One woman explained how the intervention encouragement, a lot of will to continue A patient also explained how increased awareness of her breast cancer experience was a were because, well, I coul Increased self reflection was also reported to be a benefit. This benefit is feelings, and behaviors during cancer diagnosis and treatment. Additionally, patients reported improved self advocacy and increased knowledge as benefits of participating in the not stay in

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87 advocacy was likely related to discussing communication with intervention patients, and increased knowledge was likely due to a combination of psychoeducation and enhance d communication with medical providers. Another patient explained how increased ow the and when they could explain, I would already know a lot of things but they also told me erapist normalize her cancer experience was helpful. Finally, improved overall well being was noted as a everything. And well, Missing s essions. What factors explained these patients missing sessions or discontinuing the program? As noted above, the two patients who dropped out of the study after just the first session reported that they wanted to focus on their medical treatments for breast cancer. One of these women felt too busy with medical appointments and the other was conce rned about transportation barriers. A review of project records revealed that several patients no showed or cancelled their in person therapy appointments due to experiencing side effects such as nausea and fatigue from their cancer treatments. Several p atients also no showed or had to cancel their therapy appointments due to conflicting medical appointments, and one patient also had frequent scheduling conflicts with her work schedule. Many patients relied on family members to

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88 transport them to and from their appointments, so family member work and personal schedules also sometimes interfered with the patients being able to attend therapy sessions. Another patient experienced transportation barriers and relied on the patient navigator to bring her to he schedule, this was not always feasible. Telephone communication was also a common barrier for patients participating in the intervention. There were several instances in which the therapists had difficulty contacting patients to conduct phone sessions and also to schedule in person sessions. Specifically, the telephone communication barriers were because patients shared phones with other people, did not have a phone or had their phone disconnecte d, did not have voicemail set up, or provided incorrect phone numbers. During the intervention, another patient reported difficulty with phone sessions due to not having a quiet and private place to speak on the phone due to a chaotic household environmen t. All of the known reasons for appointment no shows and cancellations are included above; there were a few no shows and cancellations for which the reason was unknown. When asked about barriers to participating in the intervention during their exit inter views, the women in this study cited several reasons that they were unable to attend their appointments, many of which were also document ed in the project records. Consistent with project records, several patients specifically described a lack of reliable transportation as a key barrier to attending their appointments. For example, one patient said was also noted as a contributing factor to transportation barriers and mis sing

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89 the reaction to What I would do was drink like and try to eat more fruit and veget Another woman described how conflicting medical appointments caused her to miss ients interviewed described barriers to attending therapy appointments, there were a few women who denied any barriers to participating in the intervention. For example, one woman S ame day services. To what degr ee did meeting with a counselor on the same day as a medical appointment affect the ability of these patients to participate in the intervention? Overall, patients reported satisfaction with meeting with their therapists on the same day as their medical a ppointments. Several patients described how meeting with a therapist on the same day as their breast clinic medical appointments was that I needed her and she was there One patient specifically described her preference to meet with a therapist before her medical appointments. She stated,

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90 It was useful to meet them before. Because I would know what I was going for. One time like they were going to do what was going to happen. But she had already told me and had explained to me. That helped me a lot. Other patients reported that they prefe rred meeting with a therapist after their medical appointments on breast clinic day. Interestingly, although medical appointments were sometimes reported as a barrier to attending therapy appointments, none of the women in this study recommended that the rapy appointm ents be held on a separate days. For some women, especially those with transportation barriers, meeting on the same day as breast clinic likely enhanced their ability to participate in the intervention. When they had breast clinic appointmen ts, it was helpful to discuss what had already happened in their appointment that day or review any questions or concerns about an upcoming appointment later in the day. For other women, meeting on the same day as breast clinic seemed more challenging, as the limited availability of therapy session times combined with trying to coordinate medical appointments, personal obligations, work schedules, and/or family member work schedules made for frequent scheduling conflicts. Although women often had appointm ents on breast clinic day, they also frequently had other medical appointments on other days of the week too. A flexible intervention, offered on both breast clinic and non breast clinic days, may help the greatest number of women attend therapy sessions. Research Question 5 What feedback did the AYUDA participants have regarding the delivery of the AYUDA intervention? Patients reported a clear preference for in person sessions over telephone sessions. They noted several advantages to in person sessions, including a

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91 more personable relationship and better rapport with their therapist, ease of asking questions, anxiety reduction, and emotional support. No disadvantages to in person sessions were identified. The only reported advantage to telephone sessions was convenience, which seemed to be outweighed by several disadvantages. These disadvantages included a lack of personal interaction, telephone connection problems, and distractions. Overall, the telephone sessions were o ften not feasible and therefore several women did not participate in telephone sessions The women who received the combination delivery of in person sessions and telephone sessions were generally satisfied with that method, when the combined delivery met hod was feasible. Most patients felt that their sessions were long enough, although some desired more time with their therapist in each session. Similarly, most patients felt that they had enough sessions, although some desired additional sessions. The majority of women reported that the timing of the introduction of the intervention soon after diagnosis was useful and/or appropriate. Some women reported that the timing of the intervention conclusion near the end of treatment was appropriate, whereas ot her women expressed a preference for a continued intervention. In person s essions. What did these patients identify as the benefits and drawbacks of in person individual sessions? Patients identified several benefits of in person individual sessions duri ng their exit interviews. A major advantage noted by several women was that in person individual sessions were more personable and allowed for better rapport between patient and therapist. For example, one woman explained, the eyes, they are talking in front of one and like the

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92 er patients elaborated on this idea and explained that it is easier to ask questions and engage in deeper conversation in person than over the phone. One Emotiona l support and anxiety reduction were also noted as advantages of in person reduction exercises such as deep breathing or guided imagery were conducted in session with the therapist present; this likely contributed to patients explaining that anxiety reduction was an advantage of in person sessions. Convenience was also described as an a dditional benefit to in person sessions, appointments on breast clinic day, in person sessions before or after their medical visit may have contributed to the convenience of tal king with a therapist in person. None of the patients provided any disadvantages to in person sessions in their exit interviews. the overwhelmingly positive reviews o f in person sessions, it is important to consider that several patients faced barriers to participating in the in person sessions, as explained in detail above. Telephone s essions. What did these patients identify as the benefits and drawbacks of telephone sessions? As described above, it was not always feasible to provide telephone sessions to patients in the intervention. Convenience was the only

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93 was fine because on e feels sick and does not want to go out. And by phone a half hour is including a lack of personal interaction, telephone connection problems, and distractions. For exa phone call would not enter or the call would fail when they telephoned me but in person I tasked while on the phone with her therapist. Her therapist noted that she seemed only partially engaged in their conversations, as she was completing household chores at the same time. These numerous drawbacks, especially telephone connection problems, were significan t and ultimately led the intervention therapists to only conduct telephone sessions on an as needed basis when patients were unable to attend in person sessions. Combination delivery m ethod. How helpful did patients find the combination of in person and over the phone sessions, and why? Due to the poor feasibility of providing phone sessions as previously noted, only three out of the nine patients in the intervention received a combination of in person and phone sessions. Some of the women who did receive a combination of both delivery m ethods described it as useful; for example, one most useful for women who experienced considerable treatment side effects that prevented them from leaving home to attend in person sessions at the hospital. None of the participants who received the combination delivery method elaborated at length

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94 during the exit interviews about the benefits of being able to receive the intervention both in person and over the phone. Although not considered full telephone sessions, many patients received brief check in phone calls in between their in person sessions. These generally occurred when patients were in between medical treatments or waiting for the next phase of treatment to begin a nd not experiencing any significant psychological distress. These brief check in calls were helpful to keep track of patient progress in treatment and understand any changes to their treatment plan or schedule. The informal check in calls were also used to assess patient needs and to determine when the next in person session should be scheduled. Although the same telephone connection problems affected these brief check in calls, these informal calls were generally useful. Because patients were not recei ving a full session in the check in calls, the telephone connection problems were not as concerning, as an unsuccessful phone call did not mean missing a full session. Delivery method p reference. Overall, did these patients prefer individual or telephone sessions? Patients overwhelmingly reported that they preferred individual in person sessions over telephone sessions. Interestingly, both patients who received the combination of both in person and telephone sessions and those who only received in person sessions agreed that in person sessions were preferable. Patients tended to be straightforward in their preference for in person sessions. For example, one woman p person

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95 patients overwhelmingly described positive rapport with their therapists and rate d it as an important advantage to in person sessions, as noted above. Length and number of s essions. How many sessions were conducted in person and on the telephone? Patients attended between three and eight in person sessions ( M = 5.44 SD = 1.51 ) As st ated above, only three out of the nine participants received any telephone sessions; these patients participated in between one and three telephone sessions ( M = 2.33, SD = 1.15) Clearly, the majority of intervention sessions were conducted in person. Wh at was the average length of sessions that patients participated in? Individual in person session lengths varied widely, ranging from 15 to 90 minutes ( M = 52.86, SD = 12.95). For each participant, the longest live sessions raged from 50 to 90 minutes ( M = 62.22, SD = 10.93), with seven out of nine women having their longest sessions last 60 minutes. The shortest live sessions ranged from 15 to 60 minutes ( M = 41.67, SD = 12.5), with six out of nine women having their shortest session s last 45 minutes. Phone sessions were generally shorter, ranging from 30 45 minutes ( M = 32.14, SD = 5.67). Two women had three 30 minute phone sessions, and the third woman had one 45 minute session. What feedback did these patients provide regarding the length and numbe r of sessions? Regarding the length of time spent in each therapy session, nearly all of the women who participated in the intervention reported that the session length was sufficient. A couple of these women felt that although the session length was suf ficient, they still would have liked to have spent more time with their therapists. For example, one of

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96 was too short, she stated that Regarding the number of sessions that patients participated in, about half of the women felt that they received a sufficient number of sessions and about half of the women reported that they desired more sessions. When asked if the number of sessions intervention of only four sessions because of communication difficulties. Another woman who terminated her participation in the study after receiving several s essions women agreed that the length and number of sessions they received in the intervention was sufficient. Intervention i ntroduction. What feedback did patients have regarding the timing of when the intervention was introduced along their cancer care continuu m? Overall, patients expressed satisfaction with the timing of the beginning of the intervention. Patients generally agreed that introducing the intervention soon after diagnosis, at the beginning of their cancer treatment journey, was appropriate and/or useful. One patient elaborated on how starting the intervention around this time was helpful for her due t o fear and emotional distress,

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97 Because I was really scared. When I would come see my doctor, I always, she would tell me not to be scared, but I c ried a lot because I was scared and when I would go see her, she, I would tell her everything and she understood me and I leave feeling really good. cancer, right. When asked if there would have been a better time to begin the therapy, one patient just At the start of the intervention, most patients had been recently diagnosed and were just about to embark on their treatment journeys. At this point in their cancer care continuum, many women were confused about their cancer and its treatment, and many also experienced significant fear and/or anxiety. Many women also benefitted from discussing com munication with family and their providers near the beginning of treatment, when the news of diagnosis was still fresh and the women had many questions and uncertainties. Overall, many women seemed to feel overwhelmed with the stresses of cancer (often ad ded on top of other significant life stressors). Several participants appeared reli e ved to have a therapist to talk to and help them manage their emotional reactions and cope more effectively with the stresses of cancer treatment. Overall, the interventi on introduction timing seemed to work well for the participants in this study. Intervention c onclusion. What feedback did patients have regarding the timing of when the intervention concluded along their cancer care continuum? In general, the

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98 intervention Patients expressed varying opinions about the timing of the conclusion of the intervention. Some patients believed that the timing of the end of the intervention was appropriate, whereas other women reported that they would have liked a continued intervention For example, one because it helps a lot. It helps one with encouragement, much value, a lot of strength for often changed (sometimes unexpectedly) during treatment, it seems reasonable to conclude that the intervention should be available at least throughout the duration of cancer treatment. The option of revisiting the therapist after chemotherapy and/or radia tion is complete could be helpful as patients are possibly faced with taking daily hormonal treatments, continuing lifestyle changes, or adjusting to long term cancer survivorship. However, the intervention therapists did not have contact with the patient s upon completion of the intervention, so they were not aware of any additional patient needs such as these. Pre and Post Intervention Measures FACT B All nine women completed the FACT B at pre and post intervention. The FACT B yields an overall total s core that reflects overall health related quality of life, including physical, social, emotional, and functional well being, as well as a breast cancer subscale that focuses on specific concerns of breast cancer. Pre intervention

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99 FACT B total scores range d from 56 to 125 ( M = 94.43, SD = 20.64), whereas post intervention FACT B total scores ranged from 75 to 119 ( M = 97.24, SD = 15.83). Five out of nine women had higher FACT B total scores at post intervention compared to pre intervention; alternatively, four out of nine women had lower FACT B total scores at post intervention. Because the FACT B incorporates so many aspects o f health related quality of life, it is not surprising that some women would report improved quality of life whereas others would report decreased quality of life. For example, because the intervention began around the time of diagnosis, it is likely that those who reported decreased quality of life from were not yet experiencing the difficulties and side effects of cancer treatments (e.g., chemotherapy and radiation) at pre intervention, but they were experiencing them at post intervention. A Wilcoxon S igned Ranks test was conducted to assess differences in health related quality of life from pre intervention to post intervention. The dependent variable was measured at the or dinal level (Likert scale), the independent variable consisted of matched pairs and the distribution of differences between the pre and post intervention FACT B total scores were approximately symmetric Therefore, the underlying statistical assumptions were met. The results indicated that the women did not experience a statistic ally significant change in health related quality of life post intervention, despite increased health related quality of life scores ( z = .42, p = .68 ) These results represent a small effect ( r = .14). A post hoc power analysis was calculated using G* Power 3.1 .2 (Faul, Erdfelder, Buchner, & Lang, 2009) based off of estimated effect size of two t ailed analysis and an alpha of .05 with a sample size of 9. Assuming a small effect size, t here was insufficient power to detect significant

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100 differences between pre and post intervention sco res on the FACT B (power = .06) (Cohen, 1998). FACIT SP All nine women completed the FACIT SP at pre and post intervention. The FACIT SP is identical to the FACT B with the exception that it does not contain items specific to breast cancer. Instead, it contains a separate subscale focusing on meaning/peace and faith; this spirituality subscale is the focus of the FACIT SP analysis. Pre intervention spirituality scores ranged from 30 to 48 ( M = 40.56, SD = 6.13). Post intervention spirituality scores ranged from 23.6 to 44 ( M = 37.43, SD = 6.05). Eight women had lower spirituality scores at post intervention when compared to pre intervention ratings, and one woman had a higher spirituality score at post interventi on. A Wilcoxon Signed Ranks Test was conducted; all und erlying assumptions were met. Although not statistically significant, t he results indicated that the women had lower spirituality scores at post intervention ( z = 1.66 p = .10 ), representing a medium effect ( r = .55 ). Although the FACIT SP suggested that women had lower spirituality scores at post intervention, several women reported increased religiosity and a closer relationship with God after experiencing cancer diagnosis and treatment, acc ording to exit interviews and project records. It is important to consider that the women in the intervention generally related their cancer experiences and religiosity, although the FACIT SP did not seem to adequately capture these changes because it foc uses on more general topics like meaning, peace, and faith. The post hoc power analysis, using estimated effect size of two tailed analysis and an alpha of .05 with a sample size of 9 revealed insufficient

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101 power (.29) to detect significant differences bet ween pre and post intervention FACIT SP scores assuming a small effect size (Cohen, 1998). BSI 18 Pre intervention BSI 18 scores are available for eight of the nine participants; one intervention BSI 18 profile was invalid due to missing resp onses. All nine women completed the post intervention BSI 18 in a valid manner. The BSI 18 yields an overall index of psychological distress on the Global Severity Index (GSI) and also provides specific information for Somatization, Depression, and Anxiet y. All participant T scores on the BSI 18 were compared to the female oncology norms. On the pre intervention BSI 18, GSI T scores ranged from 45 to 77 ( M = 56.88, SD = 10.97). Two women reported clinically significant levels of distress ( T > 60) placing them above the 84th percentile on the pre intervention GSI. Specifically, one woman had a GSI T score of 68 (96th percentile) whereas another had a GSI T score of 77 (98th percentile). Post intervention GSI T scores ranged from 31 to 68 ( M = 53.11, SD = 11.15). Two women reported clinically significant levels of distress; one of these women had a post intervention GSI T score of 62 (88th percentile). The other woman had a post intervention GSI T score of 68 (96th percentile). As indicated by their GS I T scores, three women reported lower overall psychological distress from pre intervention to post intervention, whereas four women reported increased distress from pre intervention to post T score remained the same from pre intervention to post intervention. Because one woman had an invalid pre intervention BSI 18 profile, the differences between her pre and post intervention GSI scores could not be calculated. This pattern of results is not particularly surprising, as one would expect for some women

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102 to become less distressed as they learn to cope more effectively with the challenges of breast cancer diagnosis and treatment, whereas other women are likely to have increased levels of distress as they experience various ups a nd downs along their cancer journey, such as unexpected changes in health status or having to learn to cope with side effects upon initiation of different treatments. A Wilcoxon Signed Ranks test was conducted to assess differences from pre to post inter vention in patient reported general psychological distress. The dependent variable was measured at the ordinal level (Likert scale) and the independent varia ble consisted of matched pairs; however, the distribution of differences between the pre and post intervention BSI 18 GSI T scores were not symmetric. Although the final assumption was not satisfactorily met, the nonparametric Wilcoxon Signed Rank test is robust to violations of symmetrical differences and was conducted nonetheless. This test sugges ted reduced levels of general psychological distress at post intervention, albeit this finding was not statistically significant ( z = .68, p = .50 ). However, results represent a small effect ( r = .24 ) on general psychological distress The post hoc power analysis, using estimated effect size of two tailed analysis and an alpha of .05 with a sample size of 8 revealed insufficient power (.09) to detect significant differences between pre and post intervention BSI 18 GSI T scores assuming a small effect size (Cohen, 1998). The BSI 18 Somatization scale provides information about distress related to perceived bodily dysfunction. Pre intervention Somatization T scores ranged from 46 to 77 ( M = 58.00, SD = 11.74), with three women reporting clinically significant levels of intervention Somatization T score was 61 (86th T T score

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103 was 77 (99th percentile). Post intervention Somatiz ation T scores ranged from 39 to 62 ( M = 52.44, SD = 9.22), with three women also reporting clinically levels of somatic distress. Two women had post intervention Somatization T scores of 61 (86th percentile) and one additional woman had a T score of 62 ( 88th percentile). Five women had lower Somatization T scores at post intervention comp ared to pre intervention, where as two women had higher Somatization T scores at post Somatization T score remained consistent from pre intervention to post intervention. The direction of change of the Somatization T score could not be calculated for one woman, as she did not complete a valid pre intervention BSI 18 protocol. A Wilcoxon Signed Ranks Tes t was conducted, and all underlying assumptions were met. Although the results indicated a reduction in somatic distress from pre to post intervention, these results were not statistically significant ( z = 1.36, p = .18 ). These results represented a me dium effect ( r = .48 ) The post hoc power analysis, using estimated effect size of two tailed analysis and an alpha of .05 with a sample size of 8 revealed insuf ficient power (.21) to detect a significant difference between pre and post BSI 18 Somatizat ion T scores assuming a small effect size (Cohen, 1998). The BSI 18 Depression scale captures symptoms indicative of clinical depression. Pre intervention Depression T scores ranged from 40 to 74 ( M = 55.00, SD = 11.10). Two women reported clinically significant depressive symptoms at pre intervention; one woman had a pre intervention Depression T score of 67 (96th percentile) whereas another had a T score of 74 (99th percentile). Post intervention Depression T scores ranged from 40 to 73 ( M = 52.22, SD = 10.91), with two women endorsing clinically significant depressive symptoms at post intervention Depression T

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104 T score w as 73 (99th percentile). Overall, five women reported lower levels of depressive symptoms at post intervention compared to pre intervention, whereas two women reported higher levels of depression at post re and post interve ntion BSI 18 Depression T scores could not be calculated due to an invalid pre intervention profile. A Wilcoxon Signed Ranks test was conducted to assess the differences between pre and post intervention BSI 18 Depression T scores; al l underlying assumptions were met. Although r esults revealed that the participants did not experience a statistically significant change in depressive symptoms their depressive symptoms decreased from pre to post intervention ( z = 1.27, p = .20) ; a medium effect was observed ( r = 45). The post hoc power analysis, using estimated effect size of two tailed analysis and an alpha of .05 with a sample size of 8 revealed insuf ficient power (.19) to detect a significant difference between pre and post BS I 18 Depression T scores, assuming a small effect size (Cohen, 1998). The BSI 18 Anxiety scale includes items that assess common symptoms of major anxiety disorders. Pre intervention Anxiety T scores ranged from 36 to 69 ( M = 53.75, SD = 10.21), with two women reporting clinically significant anxious symptoms. One intervention Anxiety T score was 62 (88th percentile) whereas the other intervention Anxiety T scores ranged from 36 to 67 ( M = 53.56, SD = 9.07). At post intervention, two women reported clinically significant levels of anxiety. One woman had a post intervention Anxiety T score of 61 (86th percentile) and another woman had an Anxiety T score of 67 (96th percentile). Four women reporte d lower levels of anxious distress at post intervention compared to

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105 pre intervention, whereas three women reported higher levels of anxiety at post T score was consistent from pre to post intervention. Again, the differ and post intervention BSI 18 Anxiety T scores could not be calculated due to an invalid pre intervention profile. All statistical assumptions were met to conduct a Wilcoxon Signed Ranks test. Although t h is test revealed that the women experienced a reduction of anxious symptoms from pre to post intervention, these results were not statistically significant ( z = .43, p = .67 ). These results represent a small effect ( r = .15 ). The post hoc power analysis, using estimated e ffect size of two tailed analysis and an alpha of .05 with a sample size of 8 revealed insufficient power (.06) to detect a significant difference between pre and post BSI 18 Anxiety T scores assuming a small effect size (Cohen, 1998). Table 4 below illustrates the scores from all domains of the BSI 18. Table 4 BSI 18 Pre and Post Intervention Scores BSI 18 Scale Min T score Max. T score Mean Std. Deviation GSI (Pre Intervention) 45 77 56.86 10.97 GSI (Post Intervention) 31 68 53.11 11.15 SOM (Pre Intervention) 46 77 58.00 11.74 SOM (Post Intervention) 39 62 52.44 9.22 DEP (Pre Intervention) 40 74 55.00 11.10 DEP (Post Intervention) 40 73 52.22 10.91 ANX (Pre Intervention) 36 69 53.75 10.21 ANX (Post Intervention) 36 67 53.56 9.07 PEPPI All nine women completed the PEPPI at pre and post intervention. The PEPPI is a brief measure consisting of five Likert style items about patient provider communication ; it yields a total score (Maly et al., 1998). Pre intervention PEPPI scores

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106 ranged from 14 to 25 ( M = 20.67, SD = 4.12) and post intervention PEPPI scores ranged from 19 to 25 ( M = 22.56, SD = 2.51). Five women had higher PEPPI scores at post intervention compared to their pre intervention ratings, whereas three women ha d lower PEPPI scores at post pre and post intervention. It is not surprising that several women had increased PEPPI scores from pre to post intervention, as many participants explained how communication was one of the most helpful aspects of the intervention. It is also possible that the women who had lower PEPPI scores at post intervention were better able to identify their communication difficulties with providers and more accurately ref lect upon their communication skills upon completion of the intervention. Some women in the intervention initially denied communication difficulties, but later acknowledged that they had many gaps in knowledge and unanswered questions they would like to a ddress with providers. A Wilcoxon Signed Ranks test was conducted to assess the differences between the pre and post intervention PEPPI scores. All assumptions for this test were met. The Wilcoxon Signed Ranks Test revealed that the wom en did not exper ience a significant increase in perceived efficacy in patient provider interactions from pre to post intervention ( z = 1.34 p = .18). The results represent a medium effect size ( r = .45). Although the results were not statistically significant the analysis of pre and post intervention PEPPI scores had adequate power to detect a significant difference (.96) (Cohen, 1998). The post hoc power analysis was calculated using an estimated effect size of two tailed analysis and an alpha of .05 with a sample size of 9.

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107 CSE All nine women completed the CSE at pre and post intervention. The CSE contains 26 brief Likert copi ng abilities, as opposed to her actual coping strategies (Chesney et al., 2006). This measure yields a total coping self efficacy score. Pre intervention CSE scores ranged from 115 to 244 ( M = 205.56, SD = 40.85). Post intervention scores ranged from 123 to 256 ( M = 206.89, SD = 4 7.42). Seven participants had higher coping self efficacy ratings upon completion of the intervention compared to their ratings before the intervention began, whereas two women reported lower coping self efficacy after the intervention. Although most w omen reported that they felt better able to cope with stress overall, it is possible that the difficulties of breast cancer treatment, in addition to other challenge s. To assess the differences between the pre intervention CSE and post intervention CSE scores, a Wilcoxon Si gned Ranks Test was conducted; all underlying statistical assumptions were met. The Wilcoxon Signed Ranks Test revealed that although the partici pants demonstrated increased coping self efficacy from pre to post intervention, this change was not statistically significant ( z = .89, p = .37 ) Howe ver, a small effect was observed ( r = .30 ) as coping self efficacy scores increased from pre to post intervention. The post hoc power analysis, using estimated effect size of two tailed analysis and an alpha of .05 with a sample size of 9 revealed insufficient power (.12) to detect a significant difference between pre and post BSI 18 Somatization T scores, assuming a small effect size (Cohen, 1998).

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108 CHAPTER IV DISCUSSION The purpose of the present study was to assess the feasibility and acceptability of a psychosocial and psychoeducational support program for Spanish speaking Latinas diagnosed with breast cancer at a safety net hospital. A specific aim of this study was to provide recommendations for the development of future psychological support programs to assist this population. Overall, patients were interested in and able to p articipate in the intervention. They were pleased with the topics addressed in the intervention and strongly preferred an in person delivery approach. The psychoeducational booklet about breast cancer and pamphlet about communication were well received a nd frequently used, whereas the vignettes were often not used due to feasibility issues. Patients generally agreed that the assessment instruments were relevant to their experiences and understandable, although project records indicated that some patients experienced difficulty completing the measures and some may have experienced slight discomfort w ith a question about sexual functioning There were no significant differences between pre intervention and post intervention scores for an y of the measures a dministered, as the analyses were generally underpowered Recommendations for Future Interventions Intervention Topi cs A particular strength of this intervention was that it included topics that were most commonly identified as needs for Latina breast cancer patients in the extant literature, including topics in health education, communication, coping with side effects, cu lture/spirituality, depression, anxiety, body image concerns, and self care. In order to

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109 address the various topics throughout the course of breast cancer treatment, the intervention consisted of various modules/sessions designed to focus on one main topi c at a time. Although the research team anticipated the need to remain flexible with regard to the ordering of particular modules for individual patients, several additional insights became apparent once the program was implemented. First, the interventi on therapists often felt a need to modify the initial session. The original plan for the first session included introducing patients to the intervention, reviewing and signing consent forms, obtaining basic intake information, and a having brief health ed ucation discussion. In reality, it was not feasible to complete all of these tasks in a single session. Because the vast majority of the patients had little to no familiarity with psychological services, the program orientation and consent process took a considerable amount of time to ensure that patients had a good understanding of the program they were signing up for. Furthermore, several patients exhibited a significant degree of distress (generally depressive and/or anxious symptoms) at the first vis it. For these patients, it was important to begin to addres s these concerns up front in the form of a brief discussion or i ntervention. Given these considerations, future programs may consider addressi ng health education issues in future sessions allowin g for more pressing needs to be discussed within the time constraints of the first session. Upon implementation, it also became apparent that a higher degree of flexibility would improve the program beyond simply altering the order of the various modul e topics. Patients would oftentimes discuss several important topics within the same session. For example, as previously discussed, communication was often addressed alongside other topics like health education and body image concerns. These topics

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110 woul d also frequently re emerge as patients progressed through treatment. Examples of this include how health education topics were addressed when p atients began new forms of treatment, or when coping with distress was re visited as treatment or personal stre ssors impacted their distress levels. Finally, the intervention therapists found that it was sometimes difficult to anticipate the next topic of discussion in the therapy sequence, as patient needs were constantly fluctuating along the course of their can cer treatment This became especially true when patients were seen less frequently during their treatment schedules due to missed appointments and/ or lag times between medical treatments One lesson learned from this program is that future interventions should thoroughly assess the relative importance of each of the main topics included for patients, but to avoid breaking sessions into distinct topics. Instead, future interventions should consider creating an even more flexible model that allows for pati ents to change the anticipated sequence of therapy topics and revisit important concepts as they arise during the often overwhelming experience of breast cancer treatment. While the module delivery format of topics was not feasible for intervention implem entation, it is likely a useful design for the organization of therapist training. For example, therapists could be trained and evaluated on topics clearly organized into modules, with the understanding that the topics would be delivered in a more flexibl e manner to patients. Overall, patients overwhelmingly reported that all of the topics discussed in the intervention were helpful. Consistent with previous research on the experiences of Latina breast cancer patients, coping with side effects and communi cation were two of the standard, required topics that were noted as being especially helpful (e.g., Ashing Giwa, 2006; Buki et al., 2008; Fatone et al., 2007; Fu et al., 2009). One suggestion for future

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111 interventions is to consider asking the patient if s he would like to invite a family member or friend into part of the communication session. Because many of the Latina breast cancer patients in the study had family or friends present to assist in their medical appointments, perhaps a private discussion wi th the patient about communication patient and their loved one ( s ) agree upon a coordinated plan prior to attending medical appointment s It may also help the patient feel more empowered to communicate with her physician if she has the support of her family or friends in the exam room who are also familiar with her plans. Given that many women in the intervention expressed that being able to talk openly in confidence was a primary motivation to attending therapy, prevent feeling like a burden to their families (Ashing Giwa et al., 2006), future interventions should aim to be mostl y individual (as o pposed to including loved ones). Additionally, patients reported that the optional topics of anxiety and body image were also some of the most useful components of the intervention; this finding is also in line with the extant literature demonstrating significant needs in these areas (e.g., Ashing Giwa, 2006; Ashing Giwa et al., 2004; Moadel et al., 2007 ; Giedzinska et al., 2004). The intervention topics included were derived from the extant research on the particular needs of this patien t population, and they were generally all well received by the patients who participated in the study. In order to provide a well rounded program, future interventions should attempt to include the variety of topics included in the current study. Becaus e most patients experienced a distressing level of anxiety, depression, and/or body image issues, future interventions may also consider including these as

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112 standard topics of discussion as opposed to additional, optional topics. Even patients who are copi ng well with distress would likely benefit from continued support and resilience based interventions in these areas to promote positive coping. Although patients did not provide any suggestions that they would have wanted to include, project records indic ated that they often wanted to discuss other major life stressors, some of which were more distressing to the patients than cancer diagnosis and treatment. Future programs should anticipate these issues arising during therapy, and be prepared to address t hese concerns as they relate to overall stress and coping levels to enhance well being and adherence to cancer treatment. Future interventions should also have appropriate Spanish speaking therapy referral sources available as needed for ongoing care beyo nd a breast cancer specific program. Although the recommendation for a more flexible intervention wherein topics are not separated within single sessions has already been noted above it is important to note that this consideration is especially signific ant regarding the topic of culture and spirituality. When patients were invited to discuss and reflect upon the impact of their culture on their experience of breast cancer diagnosis and treatment, they were generally unable to do so. Patients appeared t o be generally unaware of how their unique perspectives differed from those of the majority population. This tendency may have been particularly strong for the population in this study, as they all had a relatively low level of acculturation to the domina nt US culture. As such, it may have been more difficult for them to distinguish their beliefs from the beliefs with which they are likely to be quite unfamiliar. Nonetheless, the intervention was still centered on cultural considerations as they were interwoven within each of the sessions.

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113 For example, discussions frequently addressed themes such as the importance of family, eful topic addressed in the intervention, despite the fact that this was not included as a formal module in the ori ginal intervention design. The inclusion of culturally relevant topics was a key aspect of the intervention that future programs for this pop ulation should definitely include apart as a separate topic from the rest of the intervention. On a related note, patients were overwhelmingly interested in having explicit discussions about their faith and how it was impacted by their experiences of breast cancer diagnosis and treatment. Although the therapists were generally able to focus the majority of a single session or module on spirituality, this topic was generally one of the most salient cultural a spects for patients. As such, discussions of faith or spirituality were often present throughout the entirety of the intervention, and especially when discussing topics such as coping with anxi ety and/or depression. This finding is not surprising, given previous research indicating that a large proportion of Latina cancer patients desire spiritual support during their treatment journeys ( Moadel et al., 2007 ). Given this evidence, future interventions should be sure to invite patients to discuss their fai th if they choose to do so, and therapists should be mindful of how patients may glean positive effects from their faith and/ or spiritual/religious communities during the difficult process of breast cancer diagnosis and treatment. Delivery Method The inte rvention in this study included in person as well as telephone sessions, largely in order to address common barriers s uch as lack of transportation that were

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114 previously identified in the literature ( e.g., Moadel et al., 2007 ) The patients that participated in this intervention demonstrated a clear preference for in person sessions, and telephone sessions were generally not feasible due to unreliable access to telephones, connection problems, and patients being distracted whil e on the phone. Furthermore, talking directly with the therapist was noted as a primary motivation for attending therapy sessions in the present study. Although the newer trend of using telehealth to expand access to healthcare services may address some b arriers in underserved populations (e.g., transportation issues), access to care is likely impacted by other barriers (e.g., access to reliable means of communication). It is also possible that the use of telephonic interventions among Spanish speaking bre ast cancer patients with a low level of acculturation to the dominant US culture may not be as culturally relevant. For example, the use of technology may not adequately capture the traditional Latino value of personalismo which emphasizes personal relati onships. Extant research on the use of telehealth for Latina breast cancer patient s is mixed, with some studies showing positive effects (e.g., Ashing Giwa, 2008, Jijaba Weiss et al., 2011), with others failing to show any significant impact (e.g., Changra ni et al., 2008). The present study suggests that future interventions designed specifically for low income Spanish speaking breast cancer patients with a low level of acculturation to the US culture should focus on offering individual, in person services Telephone calls should generally be limited to brief check in calls in between regularly scheduled sessions. One aspect of the intervention that worked particularly well was the collaboration between the therapists and the breast clinic patient navigator, as she actively helped recruit patients into the study. Furthermore, m any patient issues related to resources

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115 emerged only during therapy sessions, including lack of transportation and other financial or logistical difficulties. Many women spe cifically expressed concern about breast cancer related resources, such as prostheses, new bras, wigs, and scarves or hats. When these issues arose, the intervention therapists were able to inform the patients of the role of the patient navigator, and in several cases, accompanied the patient directly to the programs for this population should take care to have a strong working alliance with patient navigators or social wo rkers familiar with resources for underserved patients as well as more specialized resources to benefit breast cancer patients. Similarly future interventions would ideally be more fully integrated with the medical team and healthcare system as a whole. Although the therapists had a strong connection with the patient navigator, the intervention used a primarily co located model of integration. As such, the intervention therapists did not have the o pportunity to work closely with the physicians, nurses, pharmacists, and other providers involved in these medical and mental health providers would have likely resulted in more holistic, patient centere d care. Provider questions or concerns about particular patients could have been addressed much more efficiently in a more integrated model. Furthermore, it is likely that more patients who might benefit from psychosocial and psychoeducational support du ring breast cancer treatment co uld be more easily identified in a truly integrated model. A more integrated system would allow for more ongoing and seamless referrals for psychotherapeutic support from a variety of providers involved in patient care

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116 Pa tients in the intervention were generally satisfied with appointments on the same day as breast clinic and did not suggest changing that format although conflicting medical appointments sometimes interfered with their ability to attend therapy sessions. In a more integrated model with a therapist available for the duration of the clinic it is likely that the therapy appointments could be more flexible, perhaps reducing the incidence of conflicting appointments. The recommendation for a more integrated i ntervention design is also supported by the extant research which indicates that collaborative care interventions have resulted in beneficial outcomes for Latina breast cancer patients (e.g., Dwight Johnson et al. 2005 ; Ell et al., 2011; Ell et al., 2008) Nonetheless, a design that offered therapy appointments on more than one day (e.g., on breast clinic day and on another day) would likely accommodate the greatest number of patients. In a more integrated, flexible system such as the one recommended for future interventions, it is likely that the flexible sessions held the same day as breast clinic would need to be shorter in duration to accommodate the needs of all patients. Patients in the current study were satisfied with appointment lengths that wer e generally between 45 60 minutes; future studies should investigate the feasibility of shorter sessions. Because not all patients are seen each week for medical appointments in breast clinic, having regular appointment times available for patients who ne ed extra support is also an important consideration for programs moving towards a more flexible, integrated delivery model Importantly, the therapists also did not have access to hospital specific resources such as computers, databases, or the electroni c medical data management system. As this study and others (e.g., Ashing Giwa et al., 2006; Fatone et al., 2007; Garcs et al., 2008 )

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117 have demonstrated, patients are often confused about their diagnostic stage and/or cancer treatments. Given this confusion, therapist access to full medical records is recommended for future interventions. With access to medical records, therapists would be able to promote treatment adherence by confirming and discussing upcoming appointments Additionally, th erapists would be able to ensure that sessions focused on the most appropriate health education topics without having to rely on often inaccurate patient reports of cancer staging and treatment plans In this study, patients were satisfied with the interve ntion beginning soon after diagnosis. Existing research also supports this finding, as the impact of diagnosis often being in the acute stage of cancer survivorship ( e.g., Buki et al., 2008 ; Spencer et al. 1999 ) Patien ts generally completed between three and eight sessions; about half of the women reported that this was sufficient, whereas the remaining half desired more sessions. Future programs should also aim to begin s oon after diagnosis, and should consider the possibility of offering a more on going longer term intervention. In addition to patient reports that some would have pre ferred additional sessions, previous research indicates that many Latina breast cancer s urvivors experience significant psychosocial needs as they finish their treatment journeys and begin re entry into a life that is no longer focused on cancer (Buki et al., 2008). Psychoeducational Materials The intervention included two formal psychoeduca tional resources: an Understanding Breast Cancer (Krames Patient Education, 2011) booklet to be used during the health education module and a Questions to Ask Your Doctor About Breast

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118 Cancer (Susan G. Komen for the Cure, 2008) pamphlet of cards to be used in the communication module. Nearly all of the participants felt that these materials were helpful. As previously described, in practice, these materials were used flexibly and repeatedly throughout the intervention Because many patients had a low leve l of knowledge about cancer, treatments, and their side effects, the informational booklet was frequently used as a basis for discussions about these various topics. The illustrations in the booklet were an invaluable resource in this intervention, especi ally as many women had low literacy levels. Future interventions should continue to prov ide linguistically and literacy appropriate health education materials and be open to ongoing use of them throughout the program Because the illustrations proved to be so useful in the therapy sessions, other programs may also consider exploring the use of additional low literacy methods to help patients increase their knowledge about breast cancer and treatment. For example, 3 dimensional breast models demonstratin g different cancer stages may facilitate discussions and further promote understanding in this low literacy populati on. Future programs may also consider including more low literacy resources to help patients understand treatment modalities, as many patients were unfamiliar with their treatment regimens and what they could expect. P erhaps patients could view a brief video detailing treatment options in a step by step format with their therapists to promote more thorough understanding and spark discussions. One recommendation for more integrated future interventions would be to have patients take brief tours of the treatmen t areas, when possible (e.g., a visit to the infusion center with a brief explanation of the process). The Questions to Ask Your Doctor About Breast Cancer (Susan G. Komen for the Cure, 2008) pamphlet also proved to be an invaluable resource in this inter vention, as it

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119 helped therapists and patients identify important gaps in knowledge in a straightforward, nonjudgmental manner. Women often initially denied having specific questions about different aspects of treatment, but after reviewing the questions o n the cards, they would often acknowledge that they did want to ask their providers some of the pre printed questions and would also the n identify additional, personalized questions. It also provided a concrete strategy to promote communication with medic al providers during appointments, as patients could take the cards to their appointments to remember to ask questions and record answers. Future interventions should consider incorporating this pamphlet, as patients responded particularly well to it. At minimum, future programs should consider helping patients realistically assess their own level knowledge about breast cancer and its treatment, as many patients in our intervention were initially unaware of their own gaps in knowledge. This recommendation is also supported by previous research indicating that Latina breast cancer patients tend to have a lower level of understanding about the disease and its treatment when compared to other women ( e.g., Chen, Diamant, Thind, & Maly, 2008; Janz, Mujahid, Haw ley, Griggs, Hamilton, & Katz, 2008 ). Although the psychoeducational materials described above were very useful in the intervention, the use of vignettes was less feasible. The original purpose of the vignettes was to normalize common concerns during breast cancer diagnosis and treatment, and help Latina patients open up about these topics in session. However, all patients in the intervention appeared forthcoming with their thoughts and emotions in therapy sessions during their treatment journeys, even without the assistance of the vignettes. This may have been partly due to selection bias, wherein patients who were reluctant to discuss

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1 20 their personal lives with a therapist chose not to participate in the intervent ion study. Due to the feasibility issues previously described, some patients received vignettes while others did not. Notably, those who did receive the vignettes indicated that they were helpful. A previous recommendation for future programs was to inc rease flexibility by avoiding a topic by topic module driven protocol Given this earlier recommendation and the lack of feasibility of assigning vignettes as homework, this approach should not be continued in future progr ams. Instead, programs may consid er using vignettes at the beginning of session s if patients appear reluctant to disclose their own experiences. Another potential strategy is to gently help challenge patients using cognitive behavioral strategies by asking patients how others (e.g., frie nds) might interpret their experiences and what advice they might offer Similarly, patients may be challenged by asking how they would respond if a loved one were experien cing a situation similar to theirs This particular strategy may be more culturall y relevant than other cognitive behavioral patterns of questioning as traditional Latino values emphasize harmony in relationships while direct questioning might be perceived as interpersonal confrontation. Assessment Instruments Although participants g enerally indicated that the assessments were relevant to their experiences during breast cancer diagnosis and treatment, they did have some important drawbacks. T he measures were time consuming, even though the research team attempted to keep assessments as brief as possible while still providing comprehen sive information for the study. Patients were often sent home with the measures to complete after the first session, as there was insufficient time in the appointment to complete the assessments in addit ion to the other tasks like introducing

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121 and consenting patients into the program, conducting a brief intake, and addressing any immediate needs. This arrangement was less than ideal, as some patients were unable to read the questionnaires in Spanish and t herefore likely relied on family members or friends to help them complete the forms, potentiall y influencing their responses. Additionally, even among those who were able to read in Spanish, several women had at least mild difficulty understanding how to f ill out the forms. Future intervention studies should consider modifying the formats of response options to enhance understanding among those with low literacy levels and unfamiliarity with formal assessments. For example, patients seemed to have an easi er time with Likert scales when they could circle an answer under each item, as opposed to referring to a key at the top of the instrument and having to fill in a blank for each item. Future researchers may consider adding visual depictions to Likert scal es to promote clearer understanding of the response options. Other measures designed for low literacy populations such as the Refugee Health Screener 15 (RHS 15; Hollifield et al., 2013 ) have illustrations of jars filled to various levels from empty to fu ll alongside the Likert scale number ratings to promote understanding. This strategy would likely benefit low literacy Latina breast how to complete the measures, future intervention studies should ensure that someone associated with the study (e.g., therapist, patient navigator research assistant ) is available to help verbally administer measures and provide clarification on instructions when necessary. Other in tervention studies should also c onsider further limiting the length of pre and post intervention measures to reduce participant burden.

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122 An unexpected (albeit nonsignificant) finding was that spirituality scores trended towards a decline (higher spiritua lity to lower spirituality) from pre to post intervention. This was in stark contrast to the many patient reports that they felt they were more religious and had a closer relationship with God after undergoing treatment as evidenced in both exit intervi ews and in project records. Although no solid conclusio ns can be drawn from this finding it does prompt uncertainty about the validity of the FACIT SP in capturing meaningful changes in religiosity/ spirituality among this population. The FACIT SP taps i nto more general topics like meaning, peace, and faith, and it is possible that this measure is not the most culturally appropriate for individuals who focus more on religion. Most of the Latinas in the study had a religious identification, and perhaps a measure that is more sensitive to changes in religiosity, as opposed to general spiritua lity, would be more appropriate. Future intervention studies among this population should consider this possibility and perhaps explore the use of a different tool to assess for changes in this domain. One potential alternative is the Santa Clara Strength of Religious Faith Questionnaire, as it has a stronger focus on religious faith as opposed to general spirituality (Plante & Boccaccini, 1997). This instrument would likely be appropriate for low literacy Spanish speaking Latina patients, as it consists of just 10 short Likert scale items and is available in Spanish. Furthermore, there has been some research evaluating the psychometric properties of the instrument among cancer patients (e.g, Sherman et al., 2001). A briefer 5 item version of the original instrument has also been developed (Plante, Vallaeys, Sherman, & Wallston, 2002). Another potential explanation for the unexpected trend of reduced spirituality f rom pre to post intervention is that women may have initially relied more heavily upon their faith as a coping mechanism before

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123 during breast cancer treatment along the course of the intervention, but rather women were able to also learn and rely upon additional methods of coping with stress. An additional consideration regarding assessment is that future programs may want to consider linking their program with insti tutional measures used to determine funding for different departments, such as measures of patient satisfaction. Institutional support for the success of programs such as this one is crucial. Demonstrated improvements in areas that the administration sets as a priority may improve the feasibility of an ongoing program being implemented into Oncology/Hematology departments. Furthermore, assessing how the program may affect medical adherence and outcomes would likely contribute to the likelihood that a prog ram such as this one would gain ongoing support from healthcare administrators. Limitations depth information from Spanish speaking breast cancer patients and project records regarding the acceptabili ty and feasibility of a psychoeducational and psychosocial support program for this population. The results of this study provided many valuable insights; however, this project also had limitations that should be addressed. As with any qualitative resear ch, potential researcher bias could have influenced the exit interview questions and the interpretation of participant responses. To reduce the impact of researcher bias, the research team implemented a standardized process for the analysis of interview t ranscripts and interpretation of the data. For example, two researchers independently coded all transcripts before the entire research team reviewed this work to promote

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124 consistent data analysis. Similarly, therapist variables may have affected the implem entation of the intervention and subsequent data analysis and interpretation. Both of the therapists were graduate students involved in the design of the intervention; as such, they may have been more invested in the program being successful. For example the graduate students implementing this new program may have been able to devote more time to accommodate individual patients than therapists working in a more established system with a greater volume of patients and additional clinical responsibilities. In order to reduce participant bias in responding to the exit interview questions, a trained patient navigator conducted these interviews. Additionally, it is important to consider the possibility that a cultural patt ern of responding in a positive, socially desirable manner ( Hopwood, Flato, Ambwani, Garland, & Morey, 2009) may have impacted the results in this study. The participants in this study gave overwhelmingly positive feedback about the program, and it is pos sible that some of these Latina participants were reluctant to convey any direct dissatisfactions. To minimize the potential effect of this cultural response pattern, some questions were designed to not simply ask patients if they were satisfied or not (y es/no) with different aspects of the program but to elaborate on strengths and also elicit opinions on specific drawbac ks Also, with regard to assessing the utility of intervention topics, patients were asked to use a Likert scale to ra te the usefulness of each theme, providing more options to patients and perhaps facilitating a more balanced response pattern. Additionally, a small sample size of just nine patients is another limitation of this study. The pre and post intervention analyses were not a pr imary outcome of this study, but rather exploratory in nature. As such, a post hoc power analysis was conducted.

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125 Powers varied widely, ranging from .06 to .96, although all but one pre /post intervention analysis (PEPPI) were underpowered. A larger samp le would have increased the likelihood that the sample would have more closely approximate d the broader population and increased statistical power to assess for differences on the pre and post intervention measures. Furthermore, the patient population va ried with regard to certain variables such as age and cancer stage ; because these within group variables were not accounted for important subgroup difference s may have been lost However, all participants shared some important characteristics with regard to level of acculturation, such as being born and raised in Central America (all but one were from Mexico) and a preference to communicate in Spanish. Contributions and Future Directions The results of this study contribute to the literature available on psychosocial and psychoeducational support programs for Latina breast cancer patients. There were no comprehensive interventions identified in the literature that addressed the wide variety of Spanish iagnosis and treatment. This is especially concerning given that there is clear evidence that Latina patients often experience poorer physical and psychosocial outcomes during breast cancer diagnosis and treatment when compared to women of other ethnic gr oups. This population tends to experience a particularly high degree of psychosocial distress and many unmet needs that emerge during the course of breast cancer diagnosis and treatment (e.g., Moadel et al., 2007 ; Spencer et al., 1999) Given ample evide nce that Latinas experience high levels of sadness, depression, anxiety, body image concerns, inadequate social support, difficulty managing treatment side effects, poor communication with providers, and high rates of

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126 decisional satisfac tion ( e.g., Ashing Giwa & Lim, 2010; Fatone et al ., 2007; Hawley et al., 2008; Ja nz et al., 2009; Moadel et al., 2007 ; Spencer et al., 1999) our team devised a comprehensive psychosocial and psychoeducational intervention informed by both the extant literature and our own formative research. The current study focused on assessing the feasibility and acceptability of this intervention to serve as a guide for future program design and implementation. Overall, patients were interested in the intervention and able to particip ate in the program. P atients were overwhelmingly satisfied with the broad range of topics covered in the intervention. Topics should be addressed in a flexible manner, with cultural themes interwoven throughout the intervention. Psychoeducational materi als were a vital aspect of the intervention, helping inspire conversations and promote understanding about breast cancer, treatment, and communication with providers. Alternatively, vignettes were not feasible, as participants appeared open and able to di scuss their personal experiences even without the use of the vignettes. Most of the assessment instruments employed in this study were feasible, although fewer or shorter instruments might be more realistic for this population Additionally, the FACIT SP may not have been as culturally appropriate as others in capturing differences in spirituality/religiosity The intervention was delivered through both in person and telephone sessions. However, throughout the course of the intervention, it bec ame clear that telephone sessions were less feasible. Patients also reported a strong preference for in person sessions with the therapist. Patients were satisfied with a program that started soon after breast cancer diagnosis. Some were satisfied with the program ending near the end of treatment, whereas others desired more sessions or a continued intervention.

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127 Future studies should focus on designing programs that incorporate more flexible methods of addressing a wide variety of topics that aligns wit h the fluctuating needs patients often have throughout their treatment Future studies should also consider implementing and evaluating more integrated models of intervention delivery, working towards finding solutions that reduce barriers to care and pro mote patient participation in these programs. Although in person sessions were strongly preferred in the present study, the extant literature is inconclusive with regard to the utility of telehealth approaches among Spanish speaking Latina breast cancer p atients. Future studies may explore the po s sibility of tailoring additional telehealth options to be more culturally appropriate in order to augment in person sessions. Patients reported satisfaction with the intervention beginning soon after diagnosis, however, future researchers may consider exploring the feasibility and utility of introducing the intervention starting at the point of diagnosis, especially as some previous research indicates that Spanish speaking Latina breast cancer patients were more likely to report too little communication and involvement in treatment decision making, as well as high levels of decisional regret (Hawley et a l., 2008). Finally, future programs may consider the impact of extending such programs to address concerns in t he re entry and long term survivorship stages to promote positive well being and maintain adherence to ongoing treatment or lifestyle changes. Given the extensive psychosocial needs of Spanish speaking Latina breast cancer patients and the lack of compreh ensive programs to address their concerns, much work still remains to be done in this area. Further feasibility and acceptability studies need to be conducted to explore culturally relevant intervention designs for this program. Equipped with realistic i ntervention design options, researchers should systematically

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128 devise, implement, and evaluate programs for this population in order to improve outcomes and address disparities affecting Spanish speaking breast cancer patients.

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138 Sherman, A. C., Simonton, S., Adams, D. C., Latif, U., Plante, T. G., Burris, S. K., & Poling, T. (2001). Measuring religious faith in cancer patients: Reliability and construct validity of the Sant a Clara Strength of Religious Faith Questionnaire. Journal of Psycho Oncology, 10, 436 443. doi: 10.1002/pon.523 & Love, Neil. (1999). Concerns about breast cancer and r elations to psychosocial well being in a multi ethnic sample of early stage patients. Health Psychology, 18 (2), 159 168. http://0 dx.doi.org.skyline.ucdenver.edu/10.1037/0278 6133.18.2.159 Susan G. Komen for the Cure. (2008). Questions to Ask Your Doctor A bout Breast Cancer ( Preguntas para el mdico acerca del cncer de seno ). Available from http://www.shopkomen.com/cart.php?m=product_detail&p=333&catID=147 ten Klooster, P. M., Oostveen, J. C., Zandbelt, L. C., Taal, E., Drossaert, C. H., Harmsen, E. J., & van de Laar, M. A. (2012). Further validation of the 5 item Perceived Efficacy in Patient Physician Interactions (PEPPI 5) scale in patients with osteoarth ritis. Patient Education and Counseling, 87 (1), 125 130. doi: 10.1016/j.pec.2011.07.017 Vona Davis, L. & Rose, D. P. (2009). The influence of socioeconomic disparities on breast cancer tumor biology and prognosis: A review. 18 (6) 883 398. doi: 10.1089/jwh.2008.1127 Voss Horrell, S. C. (2008). Effectiveness of cognitive behavioral therapy with adult ethnic minority clients: A review. Professional Psychology: Research and Practice, 39 (2), 160 168. doi: 10.1037/0735 7028.39.2.160

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139 We Raich, P. C. (2008). Patient navigation: State of the art or is it science? Cancer, 113 (8), 1999 2010. doi: 10.1002/cncr.23815 Yanez, B., Thompson, E. H., & Stanton, A. L (2011). Quality of life among Latina breast cancer patients: A systematic review of the literature. Journal of Cancer Survivorship, 5 (2), 191 207. doi: 10.1007/s11764 011 0171 0

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140 APPENDIX A Patient Vignettes (English and Spanish) Body Image Elena is a 40 year old woman who recently underwent a mastectomy. She is upset with her new body and feels like she is no longer a woman. Her husband has avoided touching her and she believes it is because he is disgusted with her new body. Little does physical affection in this relationship is making Elena feel like she is no longer the beautiful woman her husband once married. Elena cries when she is alone because s he does not want to worry her family. She tries to act like she has everything under control so to continue the peace at home. What do you think would happen if she talked to her husband about how she feels? What should Elena do? Elena es una mujer de 4 0 aos de edad quien reci entemente tuvo mastectoma. Est molesta con su nuevo cuerpo y se siente como si ya no fuera mujer. Su marido ha evitado tocarla y ella cree que es porque est repugnado con su nuevo cuerpo. Pero ella no sabe que su marido no la ha tocado porque tiene miedo de lastimarla. La falta de cario fsico en esta relacin hace que Elena se sienta como si ella ya no es la hermosa mujer con quien su marido s e cas Elena llora cuando est sola porque ella no quiere preocupar a su familia. Tra ta de actuar como si tiene todo bajo control para continuar la paz en casa. Qu piensa que sucedera si habla con su marido acerca de cmo se siente? Qu debe hacer Elena? Depression Guadalupe was home alone while her husband (Juan) was at work and the kids at school. She was watching her afternoon soap opera when she suddenly burst into tears. Guadalupe has not stopped thinking about death since the doctor gave her the news about her breast cancer. Juan looks at her as though she has her days counted Every now and then the kids beg her not to die. Guadalupe turns off the television and continues to cry until she falls asleep. She has been doing this every day and has even stopped talking to her best friend. Guadalupe estaba sola en su casa mient ras Juan (su esposo) trabajaba y los nios en la escuela. Estaba viendo su novela de la tarde cuando de repente empez a llorar inconsolablemente. Desde que el doctor le dio la noticia de su cncer Guadalupe no ha dejado de pensar en la muerte. Juan la ve con los ojos tristes como si tuviera los das contados. Cada rato los nios le piden a su mami que por favor no se muera. Guadalupe apaga la televisin y sigue llorando hasta dormirse. Ha estado haciendo esto todos los das y hasta a dejado de hablar con su comadre (mejor amiga). Anxiety Rita rushes to the hospital. Her father called her to let her know that he took her mom into the ER because she was complaining of chest pains. Rita gets to talk to the doctor before seeing her mother. He explains that all the tests are coming out normal and that there is nothing wrong. The doctor suspects that Lorena (mother) had a panic attack and

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141 explains what this is. Rita goes in to talk to her mother to hear about what happened. Lorena said she was cleanin g and she started to get tired so she stopped. She then went to get the mail only to see a bunch of medical bills. A few stated they were being sent to collections. That was when her heart started pounding and feeling tight. Her husband was watching te levision when she yelled for his help. Next thing she knew she was in the hospital feeling like she was going to die. What happened to Lorena? What can she do to avoid feeling this way? Rita se apresura al hospital. Su padre la llam para avisarle que su mam est en la URGENCIAS porque se que jaba de dolores de pecho. Rita habla con el doctor antes de ver a su madre. El doctor explica que todas las pruebas salen normales y que no hay nada malo. El mdico sospecha que Lorena (madre) tuvo un ataque de pn ico y explica lo que esto es. Rita entra a hablar con su madre para enterarse de lo que sucedi. Lorena dijo que estaba limpiando y comenz a cansarse tanto que tuvo que dejar de limpiar. Despus fue a conseguir el correo para slo ver un ramo de cuentas m dicas. Unos indicaron que fueron enviados a colecciones. Eso fue cuando su corazn empez a golpear y sentirse apretado. Su marido estaba viendo la televisin cuando grit para su ayuda. En lo siguiente que se dio cuenta ya estaba en el hospital sintindo se que iba a morir. Qu le sucedi a Lorena? Qu puede hacer para evitar sentirse de esta manera? Psychological Barriers to Treatment Ofelia recently immigrated to the United States 6 months ago. She went to her doctors for a physical exam and they fou nd a bump in her breast. With more studies the doctor respect her because of h er immigration status and inability to speak English. Ofelia was stressing over everything and started to consider going back to Mexico for treatment. Her family in Mexico has already contacted the local healer and they are waiting for her. Have you eve r felt as though you were treated differently because of your immigration status? Were there times you felt disrespected by those involved in your medical treatment? How did you handle this? Ofelia recin lleg a los Estados Unidos hace 6 meses. Fue a un examen fsico donde la doctora le encontr una bolita dentro del seno. Con ms estudios le encontraron cncer de mama. Ofelia no le tiene confianza a los doctores de los Estados Unidos porque entran y salen tan rpido de su cita mdica. Ofelia sien te que las enfermeras y los doctores no la respetan porq ue es inmigrante y no habla el ingl s. Ofelia, estaba estresada con todo lo que ha pasado y tiene ideas de regresarse a Mxico para tratamiento. La familia en Mxico ya h abl con el curandero local y la estn esperando. Culture/Spirituality Rita realized that a couple of months had passed since her mother was diagnosed with daughter beca wanted to see her soon after the diagnosis. She decided to call her mother and ask what d to see the doctor a couple months ago? Have you been go

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142 ure me he will. My life is in H is hands and H Did you also believe that your life was only in the hands of God? What helped you move forward? Rita se dio cuenta de que un par de meses haban pasado desde que su madre fue diagnosticada con cncer de seno. Su madre (Lorena) no quiere ir a sus citas sin su hija porque ella no habla el ingls muy bien. Rita record que el mdico quera verla poco despus del diagnstico. Decidi llamarle a su madre para ver que paso. "Mam, que no tena qu e ver el doctor hace unos meses? Ha estado yendo sin m ? Su madre contesta, "no, Rita no he estado yendo sin ti. Es que no s si es una buena idea ir. Me va querer quitar el seno y me va mutilar. Adems, si Dios quiere curarme lo har. Mi vida est en s us manos y l es el nico que me puede hacer mejor." Tambin cree usted que su vida estuvo slo en las manos de Dios? Qu fue lo que le ayud a moverse adelante? Behavioral Change Susana is in the waiting room waiting for the nurse to call her in for her appointment. She is feeling pretty sick and tired. She notices another woman coming in for her appointment wearing gym clothes. This woman has a smile on her face and looks happy The woman sits next to Susana and starts talking to her. She introduces herself as Veronica and tells her about her day. They start talking about how cancer has affecte d their lives and exchange numbers. Veronica mentioned that she walks everyday and it takes her mind off of what is going on. They soon realize that they live two blocks from each other. Veronica invites Susana to go along for walks with her. Do you t hink Susana should call Veronica and set up a time to go for a walk? How would walking help Susana? Susana est en la sala de espera est esperando que le llame la enfermera para su cita. Se siente bastante enferma y cansada. Ve a otra mujer entrar a su c ita que lleva ropa de gimnasio. Esta mujer tiene una sonrisa en su cara y parece feliz y relajada. Susana no puede evitar de pensar, por qu est feliz si tiene cncer ?" La mujer se sienta a un lado de Susana y le empieza hablar con ella. Se introduce co mo Vernica y le dice acerca de su da. Comienzan hablar de cmo el cncer ha afectado sus vidas e intercambian nmeros. Vernica mencion que camina diario y eso la distrae de lo que est pasando. Pronto se dan cuenta de que viven a dos cuadras de uno al otro. Vernica invita Susana a ir a caminar. Piensa que Susana debera llamarle a Vernica y establecer un tiempo para caminar? Cmo le ayudara el caminar a Susana? Treatment options/Communication George walks into the bathroom after hearing loud noise s. Maria was hovering over the toilet seat vomiting. George : Maria are you ok? Maria George Maria : The Doctor said I would be getting really sick from the chemotherapy George Maria

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143 George tting Maria : Ok. I will schedule an appointment to see him this week. I hope he can help. How should Maria ask her doctor for help with this situation? George camina al bao despus de or ruidos fuertes. Mara estaba sobre el inodoro vomitando. George : Mara estas bien? Mara : ¡Dios mo, yo no soporto esto! George : Has estado vomitando todos los das esto no puede ser bueno. Mara : El doctor me aviso que estara enferma por la quimioterapia George : Si pero no hay algo que te puede dar para que no te enfermas tanto? Mara : Tengo miedo preguntarle. Qu tal si se enfada o lo ofendi si le pregunto? George : l no puede enfadarse contigo. Los mdicos quieren ayudar y si sabe que te ests enfermando quizs hay algo que puede hacer. Mara : Ok. Har una cita para verlo esta semana. Espero que pueda ayudar. Cmo Mara debera preguntarle a su doctor sobre esta situacin? George comes home from work and hears the shower. He walks into the bedroom George : Maria what is going on? Maria George : But why are you crying? Tell me, please. I want to help! Maria : My hair is falling off! My beautiful l ong black hair is falling off in chunks and I want me anymore. George : Maria, we knew this was going to happen. The doctor told us the side effects of treatment. Th will grow back. Maria look like myself anymore. George: will stick together through thick and What can Maria do to make herself feel better? She is so upset with losing her hair W hat kinds of things can she do to hel p her deal with losing her hair? George llega a casa del trabajo y oye la regadera. Camina a la recmara hacia el bao y se para cuando oye el llanto de M George : Mara qu pasa? Mara : ¡No entres! George : Pero por qu lloras? Dme, por favor. ¡Quiero ayudar! Mara : ¡Mi pelo se me est cayendo! Mi hermoso pelo largo y negro se me cae en pedazos y no puedo hacer nada para evitarlo. Estar pelona y fea. Y despus no me desears.

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144 George : Mara, supimos que esto iba a suceder. El doctor nos dijo los efectos secundarios de tratamiento. Esto no me sorprende y yo no estoy molesto que pierdas el pelo. Volver a crecer el pelo. Mara : ¡Pero voy a parecer hombre! Y dejaras de quererme porque ya no ser la misma. G eorge : No diga eso. Eres mi esposa y estaremos juntos en las buenas y en las malas. Te quiero, no te preocupes vamos a buscar la manera de resolver esto. Qu puede hacer Mara para hacerse sentir mejor? Ella est muy molesta por estar perdiendo el pelo qu puede hacer ella para enfrentar esta situacin?

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145 APPENDIX B Intervention Assessment Instruments 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 born? ___________________________ 3. How long have you lived in the Unit ed States? ___ All my life ___ years 4. Your current marital status? [Circle one] Never married Married Divorce d 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_____ the highest level of education you completed: Grade School High School College Post 1 2 3 4 5 6 7 8 9 10 11 12 1 2 3 4 Graduate

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146 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 III 1. Do you speak ----> Only Spanish Spanish better than English Both Spanish and English equally well English better than Spanish Only English 2. Do you read ---> Only Spanish Spanish better than English Both Spanish and English equally well English better than Spanish Only English 3. Was your early life [childhood and teenage years] spent in ---> Only in Mostly in E qually in Latin America Mostly in the Only in Latin America Latin America and the USA USA USA 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 background, do you feel ---> Very Proud Proud Somewhat Proud Little Pride N o Pride

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147 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 Separad a Co ha bitante (vive con pare ja) Viuda 5. Est usted actualmente trabajando?___S___No Est usted retirada?___S ___No 6. Cul es/fue su ocupacin? _____________________ 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)? ______ 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+

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148 Seccin II 1. Cuando fue diagnosticada con cncer del seno? ____ mes ____ ao 2. Cual fue la etapa de su diagnstico ? __Etapa I, __ Etapa II, __ Etapa III, __ Etapa IV 3. Le realizaron una ciruga/mastectoma? ___ S ___ No __ Pendiente 4. Le dieron quimioterapia? ___ 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 Espaol e ingls igualmente bien Ingls mejor que espaol Slo ingls 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] en --> Slo en Latino Amrica La mayor parte en Latino Amrica Igualmente en Latino Amrica y en USA Principalmente en USA Slo en USA. 4. Actualmente su crculo de amigos es ---> Casi todos son Hispanos/ Latinos La mayora son Hispanos/ Latinos Igualmente 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

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149 FACT B and FACIT SP ( English and Spanish) FACT B and FACIT SP Below is a list of statements that other people with your illness have said are important Please circle or mark one number per line to indicate your response as it applies to the past 7 days PHYSICAL WELL BEING Not at all A little bit Some what Quite a bit Very much GP 1 I have a lack of energy 0 1 2 3 4 GP 2 I have nausea 0 1 2 3 4 GP 3 Because of my physical condition, I have trouble meeting the needs of my family 0 1 2 3 4 GP 4 I have pain 0 1 2 3 4 GP 5 I am bothered by side effects of my treatment 0 1 2 3 4 GP 6 I feel ill 0 1 2 3 4 GP 7 I am forced to spend time in bed 0 1 2 3 4 SOCIAL WELL BEING Not at all A little bit Some what Quite a bit Very much GS 1 I feel close to my friends 0 1 2 3 4 GS 2 I get emotional support from my family 0 1 2 3 4 GS 3 I get support from my friends 0 1 2 3 4 GS 4 My family has accepted my illness 0 1 2 3 4 GS 5 I am satisfied with family communication about my illness 0 1 2 3 4

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150 GS 6 I feel close to my partner (or the person who is my main support) 0 1 2 3 4 Q 1 Regardless of your current level of sexual activity, please answer the following question. If you prefer not to answer it, please mark this box [ ] and go on to the next section GS 7 I am satisfied with my sex life 0 1 2 3 4 EMOTIONAL WELL BEING Not at all A little bit Some what Quite a bit Very much GE 1 I feel sad 0 1 2 3 4 GE 2 I am satisfied with how I am coping with my illness 0 1 2 3 4 GE 3 I am losing hope in the fight against my illness 0 1 2 3 4 GE 4 I feel nervous 0 1 2 3 4 GE 5 I worry about dying 0 1 2 3 4 GE 6 I worry that my condition will get worse 0 1 2 3 4 FUNCTIONAL WELL BEING Not at all A little bit Some what Quite a bit Very much GF 1 I am able to work (include work at home) 0 1 2 3 4 GF 2 My work (include work at home) is fulfilling 0 1 2 3 4 GF 3 I am able to enjoy life 0 1 2 3 4 GF 4 I have accepted my illness 0 1 2 3 4 GF 5 I am sleeping well 0 1 2 3 4

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151 GF 6 I am enjoying the things I usually do for fun 0 1 2 3 4 GF 7 I am content with the quality of my life right now 0 1 2 3 4 ADDITIONAL CONCERNS Not at all A little bit Some what Quite a bit Very much SP 1 I feel peaceful 0 1 2 3 4 SP 2 I have a reason for living 0 1 2 3 4 SP 3 My life has been productive 0 1 2 3 4 SP 4 I have trouble feeling peace of mind 0 1 2 3 4 SP 5 I feel a sense of purpose in my life 0 1 2 3 4 SP 6 I am able to reach down deep into myself for comfort 0 1 2 3 4 SP 7 I feel a sense of harmony within myself 0 1 2 3 4 SP 8 My life lacks meaning and purpose 0 1 2 3 4 SP 9 I find comfort in my faith or spiritual beliefs 0 1 2 3 4 SP 10 I find strength in my faith or spiritual beliefs 0 1 2 3 4 SP 11 My illness has strengthened my faith or spiritual beliefs 0 1 2 3 4 SP 12 I know that whatever happens with my illness, things will be okay 0 1 2 3 4 B 1 I have been short of breath 0 1 2 3 4 B 2 I am self conscious about the way I dress 0 1 2 3 4

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152 B 3 One or both of my arms are swollen or tender 0 1 2 3 4 B 4 I feel sexually attractive 0 1 2 3 4 B 5 I am bothered by hair loss 0 1 2 3 4 B 6 I worry that other members of my family might someday get the same illness I have 0 1 2 3 4 B 7 I worry about the effect of stress on my illness 0 1 2 3 4 B 8 I am bothered by a change in weight 0 1 2 3 4 B 9 I am able to feel like a woman 0 1 2 3 4 P 2 I have certain parts of my body where I experience pain 0 1 2 3 4

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153 FAC T B y FACIT SP A continuaci n encontrar una lista de afirmaciones que otras personas con su misma enfermedad consideran importantes. Marque un solo n mero por l nea para indicar la respuesta que corresponde a los ltimos 7 das ESTADO FSICO GENERAL DE SALUD Nada Un poco Algo Mucho Much simo GP 1 Me falta energ a 0 1 2 3 4 GP 2 Tengo nuseas 0 1 2 3 4 GP 3 Debido a mi estado fsico, tengo dificultad para atender a las necesidades de mi familia 0 1 2 3 4 GP 4 Tengo dolor 0 1 2 3 4 GP 5 Me molestan los efectos secundarios del tratamiento 0 1 2 3 4 GP 6 Me siento enfermo(a) 0 1 2 3 4 GP 7 Tengo que pasar tiempo acostado(a) 0 1 2 3 4 AMBIENTE FAMILIAR Y SOCIAL Nada Un poco Algo Mucho Much simo GS 1 Me siento cercano(a) a mis amistades 0 1 2 3 4 GS 2 Recibo apoyo emocional por parte de mi familia 0 1 2 3 4 GS 3 Recibo apoyo por parte de mis amistades 0 1 2 3 4 GS 4 Mi familia ha aceptado mi enfermedad 0 1 2 3 4 GS 5 Estoy satisfecho(a) con la manera en que se comunica mi familia acerca de mi enfermedad 0 1 2 3 4

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154 GS 6 Me siento cercano(a) a mi pareja (o la persona que es mi principal fuente de apoyo) 0 1 2 3 4 Q 1 Sin importar su nivel actual de actividad sexual, conteste a la siguiente pregunta. Si prefiere no contestarla, marque esta casilla [ ] y continue con la siguiente seccin. GS 7 Estoy satisfecho(a) con mi vida sexual 0 1 2 3 4 ESTADO EMOCIONAL Nada Un poco Algo Mucho Much simo GE 1 Me siento triste 0 1 2 3 4 GE 2 Estoy satisfecho de cmo me estoy enfrentando a mi enfermedad 0 1 2 3 4 GE 3 Estoy perdiendo las esperanzas en la lucha contra mi enfermedad 0 1 2 3 4 GE 4 Me siento nervioso(a) 0 1 2 3 4 GE 5 Me preocupa morir 0 1 2 3 4 GE 6 Me preocupa que mi enfermedad empeore 0 1 2 3 4 CAPACIDAD DE FUNCIONAMIENTO PERSONAL Nada Un poco Algo Mucho Much simo GF 1 Puedo trabajar (incluya el trabajo en el hogar) 0 1 2 3 4 GF 2 Mi trabajo me satisface (incluya el trabajo en el hogar) 0 1 2 3 4 GF 3 Puedo disfrutar de la vida 0 1 2 3 4 GF 4 Ha aceptado mi enfermedad 0 1 2 3 4

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155 GF 5 Duermo bien 0 1 2 3 4 GF 6 Disfruto con mis pasatiempos de siempre 0 1 2 3 4 GF 7 Estoy satisfecho(a) con mi calidad de vida actual 0 1 2 3 4 OTRAS PREOCUPACIONES Nada Un poco Algo Mucho Much simo SP 1 Me siento en paz 0 1 2 3 4 SP 2 Tengo una razn para vivir 0 1 2 3 4 SP 3 Mi vida ha sido productiva 0 1 2 3 4 SP 4 Tengo dificultades para conseguir paz mental 0 1 2 3 4 SP 5 Siento que mi vida tiene sentido 0 1 2 3 4 SP 6 Soy capaz de encontrar consuelo dentro de m mismo(a) 0 1 2 3 4 SP 7 Tengo un sentimiento de armona interior 0 1 2 3 4 SP 8 A mi vida le falta sentido y propsito 0 1 2 3 4 SP 9 Encuentro consuelo en mi fe o mis creencias espirituales 0 1 2 3 4 SP 10 Encuentro fuerza en mi fe o mis creencias espirituales 0 1 2 3 4 SP 11 Mi enfermedad ha fortalecido mi fe o mis creencias espirituales 0 1 2 3 4 SP 12 Pase lo que pase con mi enfermedad, toda va a ir bien 0 1 2 3 4 B 1 Me ha faltado el aire para respirar 0 1 2 3 4

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156 B 2 Estoy preocupada con la manera de vestirme 0 1 2 3 4 B 3 Tengo el brazo o los brazos hinchados o doloridos 0 1 2 3 4 B 4 Me siento fsicamenta atractiva 0 1 2 3 4 B 5 Me molesta la prdida de cabello 0 1 2 3 4 B 6 Me preocupa que, algn da, otros miembros de mi familia puedan padecer de la misma enfermedad 0 1 2 3 4 B 7 Me preocupan las consecuencias del estrs (la tensin) en mi enfermedad 0 1 2 3 4 B 8 Me molestan los cambios de peso 0 1 2 3 4 B 9 Me sigo sintiendo una mujer 0 1 2 3 4 P 2 Tengo dolor en c iertas partes del cuerpo 0 1 2 3 4

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157 PEPPI (English and Spanish) PEPPI The following 5 questions are about how you interact with doctors as a patient. Please circle the number that tells me how CONFIDENT you feel in your ability to do each of the following things. Remember, these questions are about your ability to do these things in general and not about any particular doctor. Rate your confidence on a scale of 1 to 5, with 5 m eaning extremely confident and 1 meaning not at all confident. How confident are you in your ability : 1. To know what questions to ask a doctor: [ 1 = not at all confident 5 = extremely confident] 1 2 3 4 5 How confident are you in your ability : 2. To get a doctor to answer all of your questions: [ 1 = not at all confident 5 = extremely confident] 1 2 3 4 5 How confident are you in your ability : 3. To make the most of your visits with your doctors: [ 1 = not at all confident 5 = extremely confident] 1 2 3 4 5 How confident are you in your ability : 4. To get a doctor to take your chief health concern seriously: [ 1 = not at all confident 5 = extremely confident] 1 2 3 4 5 How confident are you in your ability : 5. To get a doctor to do something about your chief health concern: [ 1 = not at all confident 5 = extremely confident] 1 2 3 4 5

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158 PEPPI Entrevistadora: Las siguientes cinco preguntas se refieren a su relacin como paciente con los mdicos. Clasifique su nivel de confianza con un nmero de 1 5, 5 quiere decir el nivel ms alto de confianza, y 1 el nivel de menos confianza. Cunta confianza tiene en su capacidad de: 1. Saber que preguntas hacerle al mdico 1. 2 3 4 5 Menos Mucha Confianza Confianza 2. Hacer que los mdicos respondan a sus preguntas 1 2 3 4 5 Menos Mucha Confianza Confianza 3. Aprovechar al mximo sus visitas a los mdicos 1 2 3 4 5 Menos Mucha Confianza Confianza 4. Hacer que los mdicos la tomen en serio 1 2 3 4 5 Menos Mucha Confianza Confianza 5. Hacer que los mdicos tomen accin en resolver los problemas mdicos que a usted ms le preocupan 1 2 3 4 5 Menos Mucha Confianza Confianza

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159 CSE (English and Spanish) Coping Self Efficacy Scale or certain are you that you can do the following: Cannot do Moderately Certainly a t all certain can do can do 0 1 2 3 4 5 6 7 8 9 10 For each of the following items, write a number from 0 10, using the scale above. 1. Keep from getting down in the dumps. _____ 2. Talk positively to yourself. _____ 3. Sort out what can be changed, and what can not be changed. _____ 4. Get emotional support from friends and family. _____ 5. Find solutions to your most difficult problems. _____ 6. Break an upsetting problem down into smaller parts. _____ 7. Leave options open when things get stressful. _____ 8. Make a plan of action and follow it when confronted with a problem. _____ 9. Develop new hobbies or recreations. _____ 10. Take your mind off unpleasant thoughts. _____ 11. Look for something good in a negative situation. _____ 12. Keep from feeling sad. _____ _____ 14. Try other solutions to your problems if your first _____ 15. Stop yourself from being upset by unpleasant thoughts. _____

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160 When things aren't going well for you, or w hen you're having problems, how confident or certain are you that you can do the following: Cannot do Moderately Certainly a t all certain can do can do 0 1 2 3 4 5 6 7 8 9 10 16. Make new friends. _____ 17. Get friends to help you with the things you need. _____ 18. Do something positive for yourself when you are feeling discouraged. _____ 19. Make unpleasant thoughts go away. _____ 20. Think about one part of the problem a t a time. _____ 21. Visualize a pleasant activity or place. _____ 22. Keep yourself from feeling lonely. _____ 23. Pray or meditate. _____ 24. Get emotional support from community organizations or resources. _____ 25. Stand your ground and fight for what you want. _____ 26. Resist the impulse to act hastily when under pressure. _____

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161 Escala de Auto Eficacia Cuando las cosas no van bien para uste d, o cuando tiene problemas, qu tan seguro se siente de poder hacer lo siguiente: No lo puedo hacer Quizs lo Muy segura para nada Puedo hacer que lo puedo h acer 0 1 2 3 4 5 6 7 8 9 10 Para cada uno de los siguientes oraciones, escriba un nmero de 0 10, utilizando la escala anterior. Cuando cosas no van bien para usted, que tan segura es usted que puede: 1. Evitar ponerme de bajn. _____ 2. Darme nimos positivos a m misma. _____ 3. Saber la diferencia entre lo que puedo cambiar y lo que no puedo cambiar. _____ 4. Recibir apoyo emocional de amigos y familia. _____ 5. Encontrar soluciones a los problemas difciles. _____ 6. Dividir un gran problema por partes ms pequeas._____ 7. Dejar las opciones abiertas cuando las cosas sean estresantes._____ 8. Hacer un plan de accin y segu irlo cuando confronto un problema._____ 9. Desarrollar nuevos pasatiempos o recreaciones. _____ 10. Quitarme de la mente los pensamientos desagradables. _____ 11. Buscar algo bueno en una situacin negativa. _____ 12. Evitar mantenerme triste. _____ 13. Ve r el punto de vista de la otra persona durante un fuerte argumento._____ 14. Tratar otras soluciones para los problemas si las primeras soluciones no funcionaron. _____ 15. Parar de trastornarme con pensamientos desagradables. _____

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162 Cuando las cosas no van bien para usted, o cuando tiene problemas, que tan seguro se siente de poder hacer lo siguiente: No lo puedo hacer Quizs lo Muy segura para nada Puedo hace r que lo puedo hacer 0 1 2 3 4 5 6 7 8 9 10 16. Hacer nuevos amigos._____ 17. Conseguir que mis amigos me ayuden con las cosas que necesito. ______ 18. Hacer algo positivo para mi misma cuando me siento desalentada. ______ 19. Hacer que se vayan los pensamientos desagradables. ______ 20. Pienso en una parte del problema a la ve z. ______ 21. Visualizo una actividad o un lugar agradable.______ 22. Evitar sentirme sola.______ 23. Orar o meditar.______ 24. Obtener apoyo emocional de organizaciones comunitarias o de otros recursos.____ 25. Mantenerme firme y pelear para lo que deseo.______ 26. Resistir el impulso de actuar apresuradamente cuando est bajo presin.______

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163 Patient Exit Survey (English and Spanish) 1. On a scale from 1 to 5 (1=not at all useful; 3=somewhat useful; 5=very useful) how useful was it to discuss the following topics? A. Learning about breast cancer and treatment? (1=not at all useful; 3=somewhat useful; 5=very useful) B. Communication skills with the doctor or your family? (1=not at all useful; 3=somewhat useful; 5=very useful) C. Coping with side effects of treatment? (1=not at all useful; 3=somewhat useful; 5=very useful) D. Culture and spirituality? (1=not at all useful; 3=somewhat useful; 5=very us eful) E. Self Care, such as diet, exercise, and making time for yourself? (1=not at all useful; 3=somewhat useful; 5=very useful) F. Depression and anxiety? (1=not at all useful; 3=somewhat useful; 5=very useful) G. Body image? (1=not at all useful; 3=somewhat usef ul; 5=very useful) 2. Were there additional topics that you wished were covered in your sessions? o If yes : What topics? 3. Were there specific handouts or exercises that stand out to you as being especially helpful (i.e. coping skills, assertiveness training, role playing)? o If yes : Which ones were most helpful? What was helpful about them? 4. What was the most useful format for learning about cancer and cancer treatment? o P amphlets, handouts, story books talking with the counselor? 5. What topics within the take home stories were most useful, and why? Psychological Barriers to Treatmen 6. How much could you relate to the women portrayed in the stories? Why? 7. How helpful (1=not at all helpful; 3=somewhat helpful; 5=very helpful) was it to read the stories and think about them at home before coming to talk about them with your counselor? 8. Did you find it helpful to be able to meet with a counselor before/after appointments? o If no : Is there another time that would have worked better for you to meet? 9. What were the benefits of in person sessions compared to telephone sessions? o What were the drawbacks of in person sessions?

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164 10. ( If patient engaged in telephone sessions ): What were the benefits to telephone sessions? o What were the drawbacks of the telephone sessions? o Overall, did you prefer the in person or telephone sessions? Why? o How useful was it to have a combination of in person and telephone sessions instead of just one or the other? 11. Was the time that you had for each session (in perso n and over the phone) with the counselor enough? o If no : How much time do you think would have been better? 12. Was the total of five to eight sessions was enough and did it work well for you? Why or why not? o If no : How many sessions would you have wanted? 13. How much did you find it helpful to begin seeing a counselor after your diagnosis, around the time you started your treatment? Why? o Is there another time that would have been better to start seeing a counselor? If yes When and why? 14. What is your opinion about the timing of the end of the intervention as you were going through your cancer treatment experience? 15. What, if anything, motivated you to come back week after week to the counseling sessions? 16. If there is a time when you did not show up to your appoi ntment, what prevented you from coming to the counseling sessions (i.e. transportation, feeling depressed, feeling sick from treatment, etc.)? 17. Were you comfortable with your counselor? o If no : What was it that made you feel uncomfortable? o Is there anything that the counselor could have done to make you feel more comfortable? 18. How relevant were the questionnaires you filled out at the beginning and end of the intervention? How much did the questionnaires capture the important parts of your breast cancer trea tment experience? Why? o Were any of the questionnaires or specific questions difficult for you to understand? If yes which ones? Why? o Were you uncomfortable answering any of the questionnaires or specific questions? If yes which ones? Why?

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165 1. E n escala del 1 al 5 (1=no fue til; 3 = algo til; 5 = muy til) que tan til fue discutir los siguientes temas? A. Aprender acerca del cncer del seno y su tratamiento? til; 3 = algo til; 5 = muy til) B. Cmo comunicarse con su mdico o con su familia? C. Cmo lidiar con los efectos secundarios del tratamiento? D. Aspectos sobre la cultura y espiritualidad? 1= no fue til; 3 = algo til; 5 = muy til) E. Cmo cuidar de s misma? incluyendo de su dieta, ejercicio, y como hacer tiempo para s misma? F. Aspectos sobre la depresin y la ansiedad? 3 = algo til; 5 = muy til) G. La imagen del cuerpo? (1= no fue til; 3 = algo til; 5 = muy til) 2. Hubieron temas que usted sinti que no fueron tiles de cubrir? Si se es el caso: Cules temas? 3. Hubieron folletos o ejercicios que ms resaltaron por que le fueron especialme nte tiles (por ejemplo, sobre cmo lidiar con efectos secu ndarios, los ejercicios de reafirmacin personal, el juego de roles)? Si se es el caso: Qu fue til acerca de esos temas? 4. Cul recurso que usamos le fue el ms til para aprender sobre el cncer y su tratamiento? Los Folletos, panfletos, las histori as el hablar con su terapeuta? 5. Qu temas dentro de las historias le fueron ms tiles, y por qu? os Nervios") Tratamiento y Comunicacin ("Opciones del Tratamiento Y Comunicacin") 6. Cunto se identific usted con la protagonista en las historias? Por qu ? 7. Qu tan til (1=no del todo til; 3 = algo til; 5 = muy til) fue leer las historias y reflexionar sobre ellas en casa antes de venir a hablar sobre ellas con su consejera? 8. Le fue til poder encontrarse con su terapeuta antes o despus de sus citas mdicas? Si no: Hubo algn otro tiempo que habra sido mejor para usted? 9. Cules fueron los beneficios de las sesiones en persona en comparacin a las de telfono? Cules fueron las desventajas de las sesiones en persona?

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166 10. (si la paciente particip en sesiones por telfono): Cu les fueron los beneficios de las sesiones por telfono? o Cules fueron las desventajas de las sesiones por telfono? o En trminos generales, prefi ri usted las sesiones en persona o las sesiones telefnicas? Por qu? o Qu tan til fue tener una combinacin de sesiones en persona con sesiones telefnicas, en vez de slo una o la otra? 11. Le parece que fue suficiente el tiempo que tuvo con la terapeuta durante cada sesin? o Si no: Cunto tiempo piensa que hubiera sido mejor? 12. Fue el total de cinco a ocho sesiones suficiente para usted y le pareci que funciono bien as? o Si no: Cuntas sesiones hubiera deseado? 13. Cmo til le fue empezar a ver a su consejera seguido de que le dieron su diagnstico, ms o menos alrededor del tiempo que comenz su tratamiento? Por qu? O hay otro tiempo que hubiera sido mejor para comenzar a v er a su consejera? Si s, c undo y por qu? 14. Piensa que la consejera termino cuando debera terminar o deba de haber seguido? 15. Ha y algo que lo motiv a seguir con la consejera semana tras semana? 16. Si hubo alguna vez cuando usted no atendi a su cita, qu fue lo que le previn atender la consejera (por ejemplo, falta de transporte, se senta deprimida, se senta enferma por tratamiento etc. )? 17. Se sinti usted cmoda con su consejera? Si no: Qu fue lo que la hizo sentirse incmoda? Hay algo que el terapeuta pudo haber hecho para que se sintiera ms cmoda? 18. Qu tan pertinentes fueron los cuestionarios que usted llen al principio y al final de la consejera? Qu tanto los cuestionarios captaron las cosas importantes de su experien cia mientras estaba en tratamiento del cncer del seno? Por qu? Fue difcil comprender algunos de los cuestionarios o preguntas especficas? i. Si s, recuerda cules? Por qu? Fue incomodo contestar algunos de los cuestionarios o preguntas especfic as? Si s, recuerda cules? Por qu?