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Martinez Tyson, Dinorah.
The social context of stress and social support among immigrant Latinas diagnosed with breast cancer
h [electronic resource] /
by Dinorah Martinez Tyson.
[Tampa, Fla] :
b University of South Florida,
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Dissertation (Ph.D.)--University of South Florida, 2008.
Includes bibliographical references.
Text (Electronic dissertation) in PDF format.
ABSTRACT: Social support plays a crucial role in both the physical and mental adjustment to the diagnosis of breast cancer and its treatment. However, the mediating effects of social support are embedded within the larger, social and cultural contexts in which support given and received. Due to language, culture and economic issues, immigrants may find themselves without the social support and networks that had previously enabled them to cope with illness and disease. This research grounds our understanding of social support and breast cancer within that larger context that includes the social environment and the experience of health disparities. Ethnographic methods were used to explore the cultural domains of social support and to examine cultural and structural factors that influence this multifaceted construct. Participant observation, key informant interviews and 28 in-depth interviews with Latina immigrants diagnosed with breast cancer were conducted in Phase I.The qualitative data gathered in Phase 1 informed the development of the structured questionnaire that was administered in Phase II to 60 Latina immigrants in West Central Florida who had been diagnosed with breast cancer. Breast cancer not only affects individuals, it impacts their social relationships, finances, work, and social roles. The analysis provides a rich and in-depth understanding of social support and contextualizes the breast cancer experience of Latina immigrants. Results suggest that cultural expectations about gender roles shape what kinds of support and assistance is provided by men and women. Spirituality and prayer were identified as non verbal sources of support. Beliefs about not burdening the family with personal concerns and beliefs that family needs should come before one's own were negatively associated with social support. English proficiency and length of time in the United States were not associated with social support.Regardless of length of time in the US there appears to be strong ties with family in their native country. While family both in the US and in their native country were identified as sources of support, they were also identified as a source of stress. Recommendations for clinicians, practitioners and community-based organizations that provide supportive services and programs to Latinos are included.
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Advisor: Linda M. Whiteford, Ph.D.
t USF Electronic Theses and Dissertations.
The Social Context of St ress and Social Support am ong Immigrant Latinas Diagnosed with Breast Cancer By Dinorah Martinez Tyson A dissertation submitted in partial fulfillment of the requirement s for the degree of Doctor of Philosophy Department of Anthropology College of Arts of Arts and Sciences University of South Florida Major Professor: Linda M. Whiteford, Ph.D Roberta Baer, Ph.D. Nancy Romero Daza, Ph.D. Holly Mathews, Ph.D. Elizabeth Barnett Pathak, Ph.D. Date of Approval: October 27, 2008 Keywords: medical anthropology, Hispanic h ealth, womens health, immigration, cancer survivorship Copyright 2008, Dinorah Martinez Tyson
Dedication This dissertation would not have been possible wit h out the encouragement, support, friendship and love I received from my hus band, Will Tyson. I thank him for quelling my academic insecurities, and always belie ving in me. I sincerely appreciate the many delicious dinners he cooked that nourished and energized me to continue writing. He was and is my inspiration. I would also like to thank my parents for showing me that with love, dedication and perseverance you can acco mplish anything and the Tyson family for their prayers. I have been blessed to ha ve many friends who have in one way or another made a difference in my life. I am espec ially grateful to Janelle Mernard, my friend and colleague for her advice and willing ear It is an honor and pleasure to graduate along side her. I would also like to recog nize, Adria Jensen, Pradeep Vanguri, Hossana Soler Vila, Marlene Rivera. Alma Flores and Antoinette Powell for their counsel and encouragement. My dissertation research would n ot have been possible with out the support, friendship and assistance from Melba Marti nez. Her personal story and dedication to improving the lives of Latinas diagno sed with cancer deeply motivated me. Gracias. Last, but not least I will forever be indebted to the many Latina cancer survivors who participated in this study. I have learned imme nsely from them; their experiences, stories and friendship have humbled me and enlighte ned me. They have taught me to never underestimate the power of being positive and the significance of hope and faith. I sincerely want to thank each of them for their pati ence and for allowing me to be a part of their life. I would like to dedicate my disserta tion to them and to the memory of Amparo and Liliana who lived fully and fought a val iantly but in the end lost their fight against cancer.
Acknowledgements There are so many people I would like to thank for inspiring, accompanying and supporting me through this journey. I could not hav e done it alone, with out the support from faculty, co-workers, friends and family. I wou ld like to begin by thanking my dissertation committee, Dr. Linda Whiteford, Dr. Ro bbie Baer, Dr. Nancy Romero-Daza, Dr. Elizabeth Barnett Pathak, and Dr. Holly Mathews for their mentorship, insights and support through the dissertation process. I am espe cially grateful to Dr. Linda Whiteford, my advisor, for her guidance, and academic/career a dvice. I have been fortunate to have amazing colleagues that cheered me on and said, Ye s, you can! when I doubted myself. I am indebted to Dr. Cathy Meade for her pr ofessionalism, scholarship and for teaching me invaluable research and project managem ent skills. I would especially like to thank Dr. Susan McMillan, for her friendship, al ways advocating for me and for believing in me. I am grateful to Dr. Nagi Kumar, f or her encouragement and sage advice. I appreciate the time Dr. Kristen Wells and Dr. Will Tyson took to patiently answer my statistical questions. I would also like to thank my first two Anthropology professors, Dr. Michael Harris and Dr. Susan Love B rown, from Florida Atlantic University, who encouraged me to pursue a graduate degree in Applied Anthropology. Last, but not least, I would also like to acknowled ge Dr. Cathy Small, Dr. Robert Trotter, Dr. Miguel Vasquez and the faculty at Northern Ariz ona University 1996-1998 who fueled my interest and passion for Applied Anthropo logy.
i Table of Contents List of Tables v List of Figures vi Abstract vii Chapter 1: Introduction Research rationale................................................................................................1 Research questions, objectives and hypothesis....................................................3 Definitions of key terms.........................................................................................5 Organization of Dissertation..................................................................................8 Summary: Situating the research........................................................................10 Chapter 2: Literature Review Medical anthropologys contribution to our understanding of cancer..................12 Anthropological relevance: Theoretical and methodological...................13 contributions Narrative......................................................................................15 Understanding culture..................................................................15 The value of community perspective...........................................16 Culture of biomedicine.................................................................19 Anthropological perspectives on the study cancer among Hispanics......18 Hispanic cultural beliefs: Looking beyond fatalism......................22 Theoretical framework: Critical biocultural anthropology.....................................25 Contextualizing social support.................................................................27 Social environment, social relationships and health................................29 Stress and social support........................................................................31 Social support, health and disease..........................................................33 Social support and breast cancer: Survival and psychosocial adaptation...........35 Multicultural perceptions of social support...............................................38 Immigration, social support and health....................................................40 Social support and Latinas within the health context...............................43 Restating research hypothesis................................................................45 Breast Cancer .....................................................................................................47 Detection, prognosis and treatment.........................................................48 Breast cancer trends an epidemiologic overview....................................52 Breast cancer risk and factors associated with poorer survival...............55 Summary and gaps in epidemiologic data...............................................60 Chapter 3: Methodology Recruitment of study participants........................................................................64 Inclusion criteria..................................................................................................65 Research design.................................................................................................65
ii Participant observation............................................................................67 Key Informant Interviews N=5.................................................................68 Sampling techniques: Key informant interviews..........................68 Data collection: Key informant intrviews......................................68 Data 8nalysis: Key informant interviews......................................68 In-depth interviews and free lists N=28...................................................69 Sampling techniques: In-depth informant interviews...................69 Data collection: In-depth informant intrviews...............................70 Data analysis: In-depth informant interviews...............................72 Structured interviews N=60.....................................................................73 Sampling techniques: Structured interviews................................73 Data collection: Structured intrviews............................................74 Administering the structured questionaire....................................78 Data analysis: Structured interviews............................................78 Informed consent and Institutional Review Board........................81 Chapter 4: Results Research setting.................................................................................................82 Latina immigrants: Description of study population.................................83 Negotiating and navigating multiple roles: Research in contex...............85 Relevance of community-based organizations........................................88 Key informant and in-depth Interview Results.....................................................90 Key informant interview findings..............................................................90 Political economic factors and sociocultural stressors that..........90 Negatively impact Latina immigrants Need for patient navigators..........................................................93 Cross cultural similarities and differences....................................93 English proficiency, informational support and communication...94 Frustrations with a broken system and lack of psychosocial ......95 programs for Latinas Sources of support: Family, faith and spirituality.........................97 Gender roles and social relationships and breast cancer............97 Sexuality and intimacy.................................................................99 Disclosure and the burden of cancer.........................................100 Support groups..........................................................................101 In-depth interview results: Sociocultural context of social support........101 and breast cancer Participant demographics (N=28)..............................................101 The immigration experience: Coming to America......................105 Cultural expectations and gender roles: What happens............107 when someone is sick? Womens role.............................................................................109 Delicate balance between telling and protecting:.......................111 Communicating with family about the diagnosis of breast cancer Access, insurance and English proficiency: Does being an.......113 Immigrant affect cancer treatment? Social support from an emic perspective...................................119 Finding the good in the bad, in the pain and in the ugly............125 Stress and cancer......................................................................126
iii Social/Familial stressors............................................................127 Structural and socioeconomic stressors....................................130 The psychosocial impact or breast cancer.................................131 Information needs and provider communication........................135 Structured Interview Results: Cultural and structural factors.................140 that influence social support Participant demographics (N=60)..............................................140 Age and ethnicity and social support.........................................142 Cultural beliefs, norms and expectations about gender.............143 roles and social support (Hypothesis 1) Language (English Proficiency), provider communication ........156 and social support (Hypothesis 2) Chronic Stress, SES and social support (Hypothesis 3)............158 Socioeconomic factors that influence social support.....160 Disease related distress and social support...................161 Immigration, length of time in the US and social ......................163 support (Hypothesis 4) Chapter 5: Discussion Overview of study findings ...............................................................................171 Gender roles and social support............................................................173 A delicate balance between telling and protecting:................................175 Internal turmoil, external calm Moral and spritual support.....................................................................178 Te tengo presente (I am thinking of you)...............................................179 La familia: Source of support, source of stress......................................180 Provider communication and information needs:...................................181 Does speaking English make a difference? Information and support needs..............................................................184 Stress and social support: Everyday realities and the burden...............185 of Cancer Staying connected, close ties and length of time in the US...................187 The shared experience of cancer survivorship......................................189 Strengths and limitations.......................................................................191 Chapter 6: Recommendations and conclusion Contextualizing social support, stress and non-disclosure................................193 Suggestions for future research........................................................................196 Situating the study of breast cancer and social support within..........................199 The anthropological context Recommendations for community-based organization, clinical practice...........201 and psycho-oncology Application of preliminary findings at the local level..........................................206 Conclusion and contributions to anthropology..................................................206 References.................................................................................................................209 Appendices.................................................................................................................248 Appendix A: Key informant interview guide...........................................................249 Appendix B: English and Spanish in-depth interview guide..................................252
iv Appendix C: English and Spanish structured questionnaire..................................275 Appendix D: List of Items included in interview scales..........................................304 Appendix E: IRB letter of approval........................................................................306 Appendix F: Demographic profile in-depth Interview participants.........................308 Appendix G: Demographic profile structured interview participants......................311 About the author.................................................................................................End Page
v List of Tables Table 1.1. Stage definitions of breast cancer...........................................................6 Table 4.1. In-depth interview participant demographics (N=28)...........................102 Table 4.2. Freelist result: Womens role...............................................................110 Table 4.3 Freelist result: Ways to help someone who is sick..............................119 Table 4.4 Freelist result: Things you do to show someone you care...................120 Table 4.5 Freelist result: Cancer causality...........................................................127 Table 4.6 Freelist result: Things someone with breast cancer should know.......136 Table 4.7 Structured Interview participant demographics (N=60).......................141 Table 4.8. Social support from men vs. women ...................................................144 Table 4.9. Cultural beliefs and expectations ........................................................145 Table 4.10. Communication with family .................................................................152 Table 4.11. Comparing cultural beliefs and expectations between older...............153 and younger women Table 4.12. Comparing cultural beliefs and expectations between women............153 who have been in the US =/< 10 years and >10 years Table 4.13. Comparing cultural beliefs and expectations among women..............154 who have low, moderate and high English proficiency Table 4.14. Comparing cultural beliefs and expectations between........................155 women who are married and not married Table 4.15. Comparing cultural beliefs and expectations among...........................155 Colombian, Cuban, Dominican, Mexican and Puerto Rican women Table 4.16. Provider communication ....................................................................157 Table 4.17. English proficiency and informational support ....................................157 Table 4.18. Stressful situations and events experienced by participants...............159
vi Table 4.19. Household income .............................................................................160 Table 4.20. Employment status..............................................................................161 Table 4.21. Distress associated with illness/treatment .........................................162 Table 4.22. Length of time in the US and ties to family in native country ..............163 Table 4.23. Comparing emotional s upport from someone in native.......................166 country vs. someone in US by length of time in the US Table 4.24. Communications with Friends and Family in Native Country .............168 Table 4.25. Comparing informational support between women who ....................169 have been in the US =/< 10 years and >10 years Table 5.1. Research objectives met and hypothesis supported by findings.........172
vii List of Figures Figure 2.1. Conceptual model of social environment and social support...................30 Figure 2.2. Conceptual model immigration experience and social support...............46 Figure 2.3. Brest cancer incidence and mortality .....................................................53 Figure 3.1. Overview diagram....................................................................................66 Figure 4.1. Native country of In-depth interview participants...................................102 Figure 4.2. Native country of structured interview participants................................140 Figure 4.3.a. Emotional support from men vs. women...............................................146 Figure 4.3.b Instrumental/tangible support from men vs. women..............................147 Figure 4.3.c Informational support from men vs. women...........................................148 Figure 4.4. Marital status and support from men.....................................................149 Figure 4.5. Comparison of emotional support from someone in native...................167 country or someone in the USA by length of time in the US Figure 4.6 Communication with friends/ family in native country............................168
viii The Social Context of Stress and Social Support among Immigrant Latinas Diagnosed with Breast Cancer Dinorah Martinez Tyson ABSTRACT Social support plays a crucial role in both the physical and mental adjustment to the diagnosis of breast cancer and its treatment. However, the mediating effects of social support are embedded within the larger, social and cultural contexts in which support given and received. Due to language, culture and economic issues, immigrants may find themselves without the social support and networks that had previously enabled them to cope with illness and disease. This research grounds our understanding of social support and breast cancer within that larger context that includes the social environment and the experience of health disparities. Ethnographic methods were used to explore the cultural domains of social support and to examine cultural and structural factors that influence this multifaceted construct. Participant observation, key informant interviews and 28 in-depth interviews with Latina immigrants diagnosed with breast cancer were conducted in Phase I. The qualitative data gathered in Phase 1 informed the development of the structured questionnaire that was administered in Phase II to 60 Latina immigrants in West Central Florida who had been diagnosed with breast cancer. Breast cancer not only affects individuals, it impacts their social relationships, finances, work, and social roles. The analysis provides a rich and in-depth understanding of social support and contextua lizes the breast cancer experience of Latina immigrants. Results suggest that cultural expectations about gender roles shape what kinds of support and assistance is provided by men and women. Spirituality and prayer were identified as non verbal sources of support. Beliefs about not burdening the family with personal concerns and beliefs that family needs should come before ones own were negatively associated with social support. English proficiency and length of time in the United States were not associated with social support. Regardless of length of time in the US there appears to be strong ti es with family in their native country. While family both in the US and in their native c ountry were identified as sources of support, they were also identified as a source of stress. Recommendations for clinicians, practitioners and community-based organizations that provide supportive services and programs to Latinos are included.
1 Chapter 1: Introduction Introduction People experience many possible emotions after a d iagnosis of cancer, including shock, disbelief, despair, anger, fear, sorrow, and uncertainty (Bloom 2002; Courtens et al 1996; Lewis et al 2001). Breast cancer affects e very aspect of an individuals life. Both the serious psychosocial and emotional side-effects of cancer and its treatment increase the need for social support (Ashing-Giwa et al 2004 b; Mathews et al 1994a). Social support plays a crucial role in both the physical a nd mental adjustment to the diagnosis of cancer and its treatment (Cassileth et al 1985; Holland & Holahan 2003; Schroevers et al 2003). However, the mediating effects of soci al support are embedded within the larger, social and cultural contexts in which suppo rt is perceived, mobilized, given, and taken (Pearlin 1985). This study seeks to understan d how cultural and structural factors combine to shape the assumptions, beliefs, and valu es that constitute social support among Latin American immigrant women diagnosed with breast cancer. Research rationale Hispanics/Latinos are now the largest and fastest growing ethnic minority group in the United States (Pew Hispanic Center 2008). In addition, Latinas tend to be diagnosed with breast cancer at younger ages, at mo re advanced stages of disease, have lower cancer survival rates, and are more like ly to receive poorer quality care/treatment and follow-up after a cancer diagnos is when compared to other ethnic groups (Li et al 2003a). Possible explanations for these disparities include low rate of medical insurance coverage, lack of knowledge about services, limited access to screening programs, and poverty (Chavez 1999; Hayne s & Smedley 1999; Huerta 1999;
2 Huerta 2003a). These issues may even be more of a p roblem for first generation immigrants who may fear the unknown and are unfamil iar with the US health care system (Haynes & Smedley 1999; Huerta 2003a). Hardships associated with immigration to the United States are often confounded by problems associated with lack of employment, ina dequate health insurance coverage, poor housing and working conditions, discrimination acculturative stress, legal problems, limited English proficiency and multiple other challenges, which all occur at a time when family and other traditional support syst ems are minimal, or even non-existent (Chavez et al 1997b; Cuellar et al 2004; Kramer et al 1999; Leclere et al 1994). Add the diagnosis of breast cancer to this picture, and it becomes much more complex. Not only is the diagnosis of breast cancer a stressful exper ience, but there are many long term psychological and physical effects that can potenti ally and frequently pose still heavier burdens to immigrant women. The experience of immigrating and adjusting to the United States and its healthcare system is especially relevant to researc hers working with immigrant populations and womens health issues. Grounding ou r understanding of social support and breast cancer within a larger context that that includes the social environment, social change, and healthcare inequalities will enable us to see how these phenomena are integrated, thereby enabling researchers to develop better programs and interventions that address everyday realities. In addition, becau se many social support instruments are quantitative, usually involving a checklist or scale, and narrowly focused, researchers may not learn about the coping behavior s, resources, or womens histories and beliefs and how these in turn effect social sup port. Social support requires interpersonal relationships which are influenced by cultural norms, beliefs and behaviors (Dressler 198 5; Hamilton & Sandelowski 2004b;
3 Jacobson 1987; Makabe & Hull 2000). However, very f ew studies among cancer survivors have explored the application of this con cept from a cross-cultural perspective (Moore 1999). Mutran, Reed and Sudha point out that differences in definitions of social support constructs are seldom considered and pose o bstacles to research in this area (2001). Few studies have explored social support an d its relation to health outcomes among Hispanic women diagnosed with breast cancer ( Alferi et al 2001; Katapodi et al 2002), and none of them have explored the underlyin g cultural assumptions that lend meaning and insight to social support among Latinas Nor have these studies examined the influence that social change and migration have on Latinas well-being and ability to adapt to and cope with breast cancer. The theoretical orientation guiding the research pr esented here is that of critical biocultural anthropology. The critical biocultural perspective is holistic and integrative (Singer 2007). It focuses on the processes and soci ocultural contexts of health and disease, while simultaneously addressing larger, po litical economic structures that influence the social environment and may mediate op portunities for social support, as well as access to healthcare and resources. More de tail is provided in Chapter 2 Literature Review. Research questions and objectives This dissertation research addresses the following research questions: Q1: How do cultural and structural factors combine to shape the assumptions, beliefs, and values that constitute social support among Latinas diagnosed with breast cancer? Q2: What are the cultural and structural factors th at influence social support among Latina immigrants diagnosed with breast cance r? The specific objectives of the research are: O1: Contextualize the cancer experience of Latina i mmigrants diagnosed with breast cancer. O2: Explore the sociocultural domains of social su pport.
4 O3: Identify the cultural and structural factors th at influence social support among immigrant Latinas diagnosed with breast cancer. O4: Identify the information and support needs of L atina immigrant breast cancer survivors. O5: Provide recommendations for community-based org anizations, clinical practice and psycho-oncology Research Hypothesis Personal observations, along with the literature gu ide the following hypotheses that were tested through the dissertation research: H1. Cultural expectations about gender roles will influence social support: H1.a., Compared to women, a higher proportion of me n will likely provide instrumental/ tangible support, and a higher propor tion of women will likely provide emotional support, compared to men. H1.b., Cultural expectations that women should not burden family and friends with personal concerns/worries will negativ ely influence social support. H1.c, Cultural expectations to be strong ( aguantar /tolerant) will negatively influence social support. H2. Language (English proficiency) will be positive ly associated with social support. H2.a, Women with limited English proficiency will b e less likely to have informational than those that who are English profi cient. H3. Chronic stress (poverty, family problems, econo mic/financial problems, immigration status) will be negatively associated w ith social support. H4. Length of time in the United States will influe nce social support. H4.a., Women who have been in the US a shorter peri od of time will likely rely on family and friends in their native county f or emotional support. H4.b., Women who have been in the US for a shorter period of time will likely have less informational support than those w ho have resided here longer. The following section offers brief definitions of key terms and concepts used in this study.
5 Definitions of key terms Breast cancer survivor/survivorship : Currently, a person is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life(Farmer & Smith 2002). Family members, friends, and caregiv ers are affected by the survivorship experience and are therefore included in this defin ition (Farmer & Smith 2002). Herein it is acknowledged that the use of the term survivor/s urvivorship stems from the western biomedical model, which emphasizes autonomy and ind ividuality (Mathews 2000; Mathews et al 1994a). Because describing women simp ly as having been diagnosed with breast cancer negates the long term psychologi cal and physical effects of cancer and its treatment, this term may be used. Breast cancer : The uncontrolled growth of malignant breast tissu e. It is currently the most common cancer in women in the US. After d iagnosis, one of the most important things to determine is the stage or the extent to which the cancer has spread. This also helps determine the womans chances for s urvival (Love & Lindsey 2000) (See Table 1.1). Stage I represents an early cancer that is localized and has not spread to the lymph nodes. In stages II and III, the cancer is in creasingly more advanced. In Stage IV, the disease has spread to other parts of the body ( metastasized). Breast cancer treatment is complex because the different types of breast cancer vary greatly in their growth rates, tendency to spread and response to tr eatment (Berkow et al 1997). Treatment may include surgery, radiation therapy, c hemotherapy, and/or hormone blocking drugs. Surgery and radiation therapy are l ocalized and only target the affected area, while chemotherapy and hormone therapy are sy stemic (Olivotto & Levine 2001).
6 Table 1.1. Stage Definitions of Breast Cancer Definition Average five-year survival Stage I Tumor less than 2 cm, no metastases, no cancer in lymph nodes 80-95% Stage II Tumor 2-5 cm but not involving skin and chest wall, if lymph nodes are involved they must be movable. 50-75% Stage III Advanced local tumor, fixed to the skin or chest wall, or presence of lymph nodes attached to structures in the axilla 30-60% Stage IV Cancer spread beyond breast and axilla to lymph nodes above the collar bone, or to distant organs 5-20% Source: Olivotto, Glenmon and Kuusk (2001) p: 102 Social support : Social support is a mediating pathway by which netw orks might influence health status (Berkman & Glass 2000c; Ber kman et al 2000). Social support is typically divided into domains that include: 1) Emotional (love, caring, sympathy, understandin g), 2) Instrumental (help, aid, assistance with tangib le needs), 3) Appraisal (help with decision making), and 4) Informational support (providing information or advice) Social networks : Social networks can be described as the web of soci al relationships that surround an individual and the c haracteristics of those ties (Berkman & Glass 2000c). Network characteristics include: size homogeneity, density, frequency of contact, multiplexity, duration, and reciprocity (M ichael et al 2002; Suarez et al 2000), The informal social network comprises relationships with family, friends, and peers, whereas connections with service providers constitu te formal networks (Berkman 1984). Latinas/Hispanics: It is important to place the term and use of the w ord Hispanic within the context of the United States society. In this study, the findings concerning this group is meaningful within the U.S. context (Oboler 1995). This term is socially and
7 politically constructed. It was created by the U.S. Office of Management and Budget in the 1970s and was used in the census for the first time in 1980 (Hayes-Bautista 1992; Hayes-Bautista & Chapa 1987). The term Hispanic has given a political solidarity to Mexicans, Cubans, and Puerto Ricans in the U.S., wh ich has in turn given them the power to collectively advance political and economi c causes and the political might to influence state and national policies. For this rea son, the leaders of these groups lobbied for the adoption of the term Hispanic (Sommers 19 91; Trueba 1998). Herein, I include women who share a common heritage in the Spanish-sp eaking Caribbean, as well as Central and South America. I will use the terms Lat ina and Hispanic interchangeably. Latin American immigrant women: This study explores the breast cancer experience of Latin American immigrant women who ha ve been diagnosed with breast cancer. Broadly defined, this term includes both re cent arrivals and long term residents of the United States who are foreign-born, who emig rated from countries in the Spanishspeaking Caribbean, including Puerto Rico Mexico, C entral and South America. Latin American immigrant women may also be referred to as Latina immigrants, foreign born Latinas and Hispanic immigrant women in this study. Psychosocial: The term is used to emphasize the close relationsh ip between psychological and social effects of a patients ill ness. It also refers to mental health and social conditions, or factors that affect psycholog ical or social well-being (http://www.merriam-webster.com/dictionary/psychoso cial). Psycho-oncology: The field of oncology that includes the psychosoci al and the psychobiological aspects of oncology. It is concern ed with aspects of cancer that go beyond treatment. It is an area that is concerned w ith the social factors that may affect disease progress and with the effects of cancer on patients psychological well-being (http://www.ipos-society.org).
8 Chronic stress: Chronic stressors are difficulties, problems, and challenges that people may experience over time during their daily lives, for instance unemployment, racism, poverty, work and work overload (Israel et al 2002; Schulz et al 2001). Organization of dissertation The dissertation manuscript is organized into six chapters. This chapter includes the research rationale, followed by the research qu estions, objectives, and hypothesis. Key terms are then defined. This is followed by a d escription of the organization of the dissertation. Chapter 2 Literature Review provides a summary of the literature relevant to the dissertation topics of medical anthropology, social support and breast cancer and is divided into four prospective sections. Section 1 o f Chapter 2 begins with a discussion of medical anthropologys contribution to our understa nding of the cancer experience. Many of the themes that emerge illustrate the gap b etween biomedical discourse and the patients lived experiences and suffering. Subs equently, anthropological perspectives on the study of cancer among Hispanics are presented. This is followed by section 2 that includes a description of the guidin g theoretical framework used for this dissertation. Section 3 of the literature review co ncentrates on social support as it relates to cancer survival and psychological adaptation. Th is is followed by a description of cross-cultural perceptions of social support. There after, the literature on social support and immigration is discussed. Next, studies that ex plore social support among Latinas within the health context are examined. Section 4 o f this chapter provides a summary of the epidemiology of breast cancer. It describes the detection, prognosis, and treatment of breast cancer. Subsequently, trends in the incid ence, mortality, and prevalence of breast cancer are discussed. This is followed by a discussion of breast cancer risk
9 factors. Finally, a brief summary is provided with special attention given to the current gaps in the epidemiological data. Chapter 3 Methodology details the research methodo logy. This chapter begins by describing the recruitment of study participants and inclusion criteria. This is followed by an overview of the research design. The qualitat ive and quantitative data collection techniques used in this study are discussed in deta il. The mixed methods include participant observation, key informant interviews w ith support and health providers, indepth interviews and structured interviews with Lat in American immigrants diagnosed with breast cancer. Participant observation process es are presented first followed by a description of the sampling techniques, data collec tion, and data analysis processes for each method. The last part of this chapter includes informed consent. Chapter 4 Results presents the research findings. This chapter is divided into three sections. The first section describes the res earch setting and provides a brief demographic overview of the Hispanic population in West Central Florida and Latin American immigrant women. This section also include s a discussion of the research experience. Section 2 contains the results from the key informant and in-depth interviews. The data describe the sociocultural con text of the breast cancer and provides an emic perspective of social support. Section 3 il lustrates the results from the structured questionnaires. Findings identify the cultural and structural factors that influence social support. Chapter 5 Discussion begins with a review of the h ypotheses. Thereafter, the research findings are thematically discussed. Discu ssions of the findings are presented in the following order, key informant, and in-depth interview, followed by structured questionnaire. Then findings are related back to th e literature. This is followed by the description of study strengths and limitations of t his study.
10 Chapter 6 Recommendations and Conclusion provides an overview and summary of research findings. Then, suggestions for future research are discussed. Recommendations for community-based organizations, clinical practice, and psychooncology are provided. This is followed by a descri ption of how the information and knowledge gained through this research was applied at the local level. Finally, the anthropological underpinnings of this study as well as this studys contributions to anthropology are discussed. Summary: situating the research For the last few years I have intimately worked wi th a grassroots community based organization that serves Latina breast cancer survivors in the Tampa Bay area (See Chapter 3 Setting). My first hand experience w ith the vital role social support plays in the recovery process and the stress and personal struggles many of the women have encountered has fueled my interest in the topic of stress and social support. The knowledge and insights I have gained through these experiences have guided my choice in dissertation topic and informed the research que stions. While this dissertation provides an anthropological analysis of social supp ort among Latina breast cancer survivors it also provides an in-depth and intimate understanding of the lived experience and personal struggles Latinas face in dealing with and overcoming this disease. Included in this dissertation are personal stories of survival and resiliency that are powerful and emotionally evocative. In summary, although breast cancer occurs in the c ontext of individual experience, to understand it fully requires linking such experiences with in a system of social relations and social change. Further, by exa mining womens position in the social fabric and cultural expectations that may render th em more vulnerable to economic and
11 family stressors during cancer treatment, we have a better understanding of Latina cancer survivors support needs.
12 Chapter 2: Literature Review Introduction This chapter includes a review of the pertinent li terature divided into four sections. Section 1 examines the contributions of m edical anthropology toward our understanding of the cancer experience and provides an overview of conceptual frameworks that have guided anthropological researc h on cancer. Special attention is given to the work of Chavez, Hunt, Erwin and other anthropologists who have specifically studied cancer among Hispanics. Sectio n 2 examines the guiding theoretical framework of critical biocultural anthropology. Thi s is followed by the description of a conceptual model of social support that includes ho w structural conditions influence the psychobiological processes by which social integrat ion and support affects health. Section 3 examines the social support literature as it relates to cancer outcomes and describes the relationship between social support, health and disease. A review of cross-cultural studies of social support is provide d with special attention to the literature on the influence of migration on social support. Se ction 4 provides an over view breast cancer which includes a description of the diagnosi s, prognosis and treatment of breast cancer as well as disease-related risk factors. Section 1: Medical anthropologys contribution to o ur understanding of cancer Medical anthropology is concerned with the cultura l, social and biological factors that contribute to health and disease (Castro & Far mer 2007; Whiteford & Bennett 2005). It is a discipline that centers on anthropologys h olistic perspective which considers the larger social and cultural context (Whiteford & Ben nett 2005). Medical anthropologists have explored the understanding and negotiating pow er between the physician and the
13 patient (Balshem 1991: 982; Clavarino et al 2004; G ifford 1986; Hunt 1994; Hunt 1998; Kaufert 1998; Saillant 1990), the culture of biomed icine in cancer care (Del Vecchio Good et al 1994; Gordon & Paci 1997; Gregg & Curry 1994; Hunt 1994; Lock 1998), palliative care and end of life (Bennett 1999; Clav arino 1999; Kagawa-Singer & Blackhall 2001; Kaufert 1999; Rosenfeld et al 2000), developm ent and evaluation of cancer screening programs (Chrisman et al 1999; Gregg 2000 ; Gregg & Curry 1994; Hubbell et al 1996b), development of health education/interven tion programs (Bailey et al 2000; Chavez et al 2001; Erwin et al 1996; Strickland et al 1996), non-disclosure of diagnosis and truth telling (Bennett 1999; Gordon 1990; Gordo n & Paci 1997; Harris et al 2003b; Kaufert 1999; Long & Long 1982), maintenance of hop e (Del Vecchio Good et al 1994; Gordon 1990; Saillant 1990), quality of life (Clava rino 1999; Gordon 1993), and social support and self-help groups (Coreil & Behal 1999; Coreil et al 2004; Mathews 2000; Moore 1999). Anthropological relevance: Theoretical and methodol ogical contributions Various theoretical and conceptual frameworks have been employed by anthropologists to better our understanding of the cancer experienc e. Early on medical anthropology adopted a more hermeneutic approach, while in recen t years there has been a gradual shift to more critical perspectives. Anthropology's contribution to the field of cancer has been especially dominant in the area of cultural mo dels of disease (Adler 1999; Chavez et al 1993b; Coreil & Behal 1999; Coreil et al 2004 ; Gregg & Curry 1994; Hunt 1993; Mathews et al 1994b) and in describing ideas about cancer and its prevention to help explain participation in screening and prevention p rograms (Bailey et al 2000; Chavez et al 1995; Chrisman et al 1999; Erwin et al 1999; Erw in et al 1996). Cultural anthropologists have studied the cancer e xperience primarily through the examination of the discourse of cancer and through the lens of interpretive anthropology
14 (Del Vecchio Good et al 1994; Gifford 1986; Gordon 1990; Langellier & Sullivan 1998; Manderson 1999a; b). Much of this research employs the cultural hermeneutic approach put forth by Good and Del Vecchio Good (1981) and h as tended to focus on a particular theme (e.g., metaphors used to describe cancer). So me studies used illness narratives to examine the cultural construction and meaning of cancer (Del Vecchio Good et al 1994; Gifford 1986; Gordon & Paci 1997; Hunter 2004 ; Mathews et al 1994a). Another area of anthropological interest stems fro m the anthropology of the body, or the embodiment of cancer (Boonmongkon et al 1999 ; Gifford 1986; 1994; Lock 1998; Saillant 1990). This research has also illuminates cultural models of cancer and their relations to medical practice, political power and gender relations (Gifford 1986; Gregg & Curry 1994; Lock 1998; Manderson 1999a; Weiss 1997) Much of this literature has been influenced by the seminal work of Sontag (1978 ), which provides the earliest semantic exploration into the popular knowledge of cancer and the body (Saillant 1990: 82) More recently, medical anthropologists have examin ed the political structure of health and medical practice using the case study of cancer. Studies by Balshem, Kaufert, Anglin and Weiss have helped contextualize the experience of cancer within the political economic structures using examples from t he US and Israel (Anglin 1997; Balshem 1990; 1991; 1995; Kaufert 1998; Weiss 1997) Chavez (1995) and Hunt (2002) also address the influence of structural factors (e .g., limited resources, lack of health insurance, limited health care access) on cancer re lated behaviors and beliefs among Hispanics. Medical anthropologists have contributed much to o ur understanding of the cancer experience. However, most studies have eithe r focused on an interpretive, hermeneutic approach or on a structural/political e conomic perspective. Few have used
15 an integrative approach (Hahn 1995) that embraces b oth an individuals personal experience and the structural/ political economic p rocesses that both shape, and are shaped by, the individual experience (Gifford 1994) Thus, this dissertation research seeks to add to this literature and use and integra tive approach to contextualize the breast cancer experience of Latina immigrants and u nderstand how cultural and structural factors combine to shape social support. In the following paragraphs, anthropologys contributions to our understanding o f cancer are briefly discussed in more detail. Narratives Anthropologists use narratives to contextualize an d understand the meaning of disease and illness this has contributed to our u nderstanding of the individual illness experience. According to Mathews (1994), narratives provide an important window into the process involved when individuals attempt to ad apt personal experience to preexisting cultural models, modifying such models in light of new information and content conflicts in their own interpretation and meaning o f illness. Through this approach, important metaphors used by cancer survivors in con ceptualizing and understanding breast cancer (Mathews 2000) have been illuminated. Metaphors are an important part of the social construction of the body, healthy or ill (Scheper-Hughes & Lock 1987). Metaphors describing images of cancer are found thr oughout cancer and illness narratives and studies about peoples understanding of their illness experiences (e.g., (Ashing et al 2003; Gordon et al 1991; Hunt 1994; L angellier & Sullivan 1998; Weiss 1998). Understanding of culture The cancer experience cannot easily be separated f rom its cultural context. While many domains relating to the cancer experienc e are universal, e.g.,
16 communication, spirituality or decision-making patt erns, people experience them differently depending on their worldview (KagawaSinger et al 1997). Thus, clinical realities are culturally constituted and vary cross -culturally and across the domains of health care. One of the most important contribution s medical anthropologists have made to the field of cancer is that culture matters, tha t culture is adaptive and dynamic. Kagawa-Singer notes that in the medical and public health literature cultural factors are probably the least understood and most misused of a ll the influencing factors in health care commonly in cancer studies, lifestyle, ethnic ity, culture and race are used synonymously (Kagawa-Singer 1995b: 113). Furthermo re, Hunt states that problems of unequal access to health posed by more material bar riers, such as insurance, transportation, education, and language are pushed from the foreground, and ethnic culture is made culpable for health inequalities ( Hunt et al 2004: 982). In this respect, culture can be equated with social injustice and po verty as the cause of health disparities (Freeman 2003). DiGiacomo (1999) states that one of the assumptions made in this arena is that the values, beliefs, or attit udes of a particular group, identified in ethnic, class or behavioral terms, are reified, and classified as homogeneous and represented as problematic, and more often than not are characterized as a risk factors (DiGiacomo 1999: 7). It is also important to recall that the explanations developed to account for disease are not static; they evolve and are reinterpreted as new information is presented and evaluated (Harris et al 2003b: 911 ). The value of community perspectives Anthropologists have long been interested in commu nity organization and community development (Chrisman et al 1999). Anthro pologists have emphasized the importance and value of gaining an insiders view a nd of involving the community in the design and implementation of cancer prevention and education programs (Chrisman et
17 al 1999; Erwin 2002; Gregg 2000; Strickland et al 1 996; Strickland et al 1999). These contributions have also informed our understanding of cancer from a holistic, crosscultural perspective to enable the design of more c ulturally relevant interventions that build on the strengths and assets of the community and the issues that are important and meaningful to them. Culture of biomedicine Anthropologists have contributed to our understand ing of and acknowledgment of the culture of biomedicine and how power is negotia ted and contested within this culture. The negotiation of power has been described in vari ous cultures and settings between physicians, patients, community and medical systems (Good 1995; Good et al 1990). Kleinman describes health care systems as forms of social reality, in which everyday life is enacted, social roles are defined and performed and in which people negotiate with each other the established status relationships und er a system of cultural rules (Kleinman 1995). Anthropologists have also examined how physicians working in the cancer arena maintain their position of authority ( Anglin 1998; Gordon & Paci 1997; Lock 1998; McMullin et al 2002; McMullin et al 1996) and how they communicate the diagnosis and prognosis of cancer through non-discl osure and truth telling cultural practices (Bennett 1999; Gordon 1990; Harris et al 2003b; Kaufert 1999; Long & Long 1982). Medical anthropologists who have studied biomedici ne as a cultural system have explored how biomedicine is socially, culturally, a nd historically constructed (Anglin 1997; Balshem 1999; Digiacomo 2003; Good et al 1990 ; Kaufert 1998). Biomedicine reflects the worldview of western industrialized so cieties, in which emphasis is placed on the individual and where facts and truth are guided by science and technology (Baer & Nichols 1998). According to Moore, in no arena has the scientific and objective paradigm
18 of biomedicine gained more primacy than in the are a of breast cancer research (Moore 1999). Biomedicine views illness as a biological en tity (Gregg & Curry 1994). Under the biomedical rubric, health professionals (e.g., onco logists) tend to separate the body and the mind and exclude the human/illness experience ( Kleinman & Kleinman 1991). In contrast, anthropologists who have explored cancer have focused on the illness experience and acknowledge the difference between i llness, disease and sickness (Hahn & Harris 1999). Anthropological perspectives on the study of cancer among Hispanics The anthropological literature on the topic of can cer among Hispanics/Latinos in the United States is primarily comprised of the wor k done by Leo Chavez and colleagues (Chavez et al 1993a; Chavez et al 1995; Chavez et a l 1993b; Chavez et al 1997a; b; Chavez et al 2001; Hubbell et al 1996a; Hubbell et al 1996b; Hubbell et al 1997) Linda Hunt (Hunt 1993; Hunt 1994; Hunt 1998) and more rec ently Debbie Erwin (Erwin et al 2005; Erwin et al 2007) To briefly summarize Hunt (Hunt 1993; Hunt 1994; Hunt 1998) explored the meaning of cancer and the causal expla nations of patients and oncologists in Santo Domingo, Mexico using in-depth interviews and participant observation. While, Chavez et al. (Chavez et al 1993a; Chavez et al 199 5; Chavez et al 1993b; Chavez et al 1997a; b; Chavez et al 2001) used a combination of ethnographic and survey research techniques and cultural consensus analysis to exami ne the influence of cultural beliefs about breast and cervical cancer risk and the use o f cancer screening tests (pap smears and mammograms) among Latina immigrants (Mexican an d Salvadorian), US born Chicanas, and European American women in Los Angele s, California. More recently, other anthropologists have explored and written abo ut this topic (Hunter 2004) and (Weiner 1999), who includes a couple chapters on Hi spanics and cancer in an edited volume on cross-cultural cancer perspectives). The majority of this work focuses on
19 breast and female reproductive cancers. Hunts stud y in Mexico and Hunters work in Peru provides an international perspective, while C havezs study in Orange, County California provides national/local cross-cultural p erspective. Hunt interviewed patients who had been diagnosed with cancer, while Chavez et al. interviewed women who had not been diagnosed with cancer and were part of the general population. Erwins work has focused on tailoring a breast and cervical canc er prevention education intervention modeled after the Witness Project among Latinas (Erwin et al 2005; Erwin et al 2007) Kleinmans exploratory models of illness have conc eptually guided most of the published anthropological studies on the topic of c ancer and Hispanics (Chavez et al 1993a; Chavez et al 1995; Chavez et al 1993b; Chave z et al 1997a; b; Chavez et al 2001; Hunt 1993; Hunt 1994; Hunt 1998). Explanatory models of illness, as described by Kleinman (1978), have been used to gain a better un derstanding of the individuals understanding of the cause of illness, symptoms, pa thophysiology, severity and sick role, and treatment (Kleinman et al 1978). Accordin g to Young, Kleinmans exploratory models are similar to Geertzs belief that cultures provide people with ways of thinking that are models of reality (Young 1980). Latinas views of cancer causality and risk are de rived from a subjective, lived experience, which is concerned with cultural norms and social order (Gifford 1986). They explain and interpret breast and cervical cancer wi thin the context of social relationships (Martinez et al 1997) and their everyday lives. His panic/Latina beliefs about cancer causality can be classified along two broad themes: 1) beliefs related to immoral or improper behavior that emphasized lifestyle/persona l choices often related to sexuality and 2) reproductive behaviors and beliefs related t o heredity and other biomedical factors (Chavez et al 1993a; Chavez et al 1995; Cha vez et al 1993b; Chavez et al 1997a; Chavez et al 2001; Erwin et al 2005; Hunt 19 93; Hunt 1994; Hunt 1998).
20 Particular emphasis is placed on the following: phy sical trauma and/or personal aggression (Chavez et al 1993a; Chavez et al 1993b; Goldman & Risica 2004; Hunt 1994; Hunt 1998; Martinez et al 1997); failure to r eproduce or excessive reproduction (Hunt 1998); husband infidelity and promiscuity (Hu bbell et al 1996b; Hunt 1998); heavy work (Hunt 1993; 1998); lack of prenatal care and i mproper breast feeding (Chavez et al 1995; Hunt 1993; Hunt 1994); and lack of medical at tention (Chavez et al 1995; Chavez et al 2001). Both Chavez and Hunt report integration or blendin g of both traditional and biomedical models of cancer (Chavez et al 1995; Cha vez et al 2001; Hunt 1994). Traditional illness models are incorporated with bi omedical models because they address specific emotional, psychological, social a nd political economic issues important to the patients experience of illness (Hunt 1993; 1998). Hunt found that even though patients receiving biomedical treatment for cancer relied primarily on biomedicine for diagnosis and treatment, their illness explanations showed that they often incorporated traditional illness concepts of witchcraft or susto into the biomedically based explanatory models of cancer. For example, when asked about wha t might have caused a particular type of cancer, respondents mentioned conventional concepts such as heredity or physiology. But when she asked "why do you think th is particular person got sick," respondents gave answers that had a moral tone and spoke of flawed behavior, interpersonal aggression and reproductive related b ehaviors (Hunt 1998 p. 301). Chavez (1995) identifies a two separate causality models for breast cancer: a lay Latina model and a biomedical model. Further he rep orts Chicanas (US born Latinas) had a biocultural view of cancer in which they exhi bited beliefs shared by both Latina immigrants and European American women that blended both traditional and biomedical beliefs about cancer. Baer et al. (2008) posit that these models can more accurately be
21 described not as distinct models but as a continuum (Baer et al 2008). Chavez et al. (2001) also contend that Latina immigrants arriving in the US have to negotiate their cultural knowledge about disease and prevention the y arrive with, with the predominant cultural knowledge and physicians knowledge of dis ease (2001).The blending of biomedical and traditional/indigenous beliefs about cancer has also been reported among other ethnic groups (Gregg & Curry 1994; Math ews et al 1994b). Both Chavez and Hunt explored physician beliefs a bout cancer. Hunt found that Mexican physicians also emphasized behavior that wa s deemed improper or immoral as the ultimate cause of the illness (Hunt 1998). Clas s issues also emerged, with physicians placing additional blame on lower-class patients who were diagnosed at a later stage of disease for not seeking care earlier when the disease was more treatable. Similarly, Martinez, Chavez and Hubbell (1997) also found that physicians in Orange County, California sometimes crossed the boundary i nto a moral interpretation of sexbased risks in cervical cancer. For example, the us e of value laden terms like promiscuous or promiscuity to define risk behav iors related to cervical cancer among Hispanic/Latina women were often used (Martinez et al 1997). All patients have culturally embedded ideas about why they become sick. However, these ideas may differ greatly from biomed ical etiologies, especially in the case of recent immigrants (Eisenbruch & Handelman 1 990: 1295). Immigrant women from Latin America bring with them a set of general cultural beliefs about gender relations, patriarchy, sexuality and morality (Dorr ington 1995, Hondagneu-Sotelo 1994, Martinez, Chavez and Hubbell 1997) that can be trac ed back to the historical and social context of Spanish colonization of Latin American a nd the Caribbean are pervasive enough that they provide an important framework for understanding Latinas beliefs about cancer. Chavez (2001), found that the main di fferences between Latinas,
22 European American and physicians in their study wer e primarily driven by immigration. In other words, Latina immigrants, who were from Me xico and El Salvador, often had different beliefs about breast cancer than US born Latinas and European-American women (Chavez et al 1993b; Hubbell et al 1996a; Hub bell et al 1997). Regardless of country of origin, Latina immigrants shared many mo re beliefs about breast cancer than their American-born Latina counterparts. In additio n, Hubbell, Chavez, Shiraz, Mishra and Valdez (1996) found beliefs that reflect a mora l framework were more prevalent among Latina immigrants than they were among US bor n Latinas. Chavez and Hubbell also report that Latina immigrants were more likely than U.S. born Latinas or European American women to have fatalistic beliefs. Hispanic cultural beliefs: Looking beyond fatalism The literature on Hispanic beliefs about cancer is growing in the wider public health arena. Most of the non-anthropological liter ature on the influence of Hispanic/Latino culture on cancer beliefs has chara cterized culture in the following ways: 1) culture is seen as knowledge and this knowledge is interpreted negatively; 2) cancer researchers use culture to explain the existence of "misconceptions"; and 3) through broader cultural themes like familismo, fatalism, respeto, simpatia, personalism o, collectivism etc. (Chavez et al 1995). Chavez laments Culture is rarely examined "as part of a coherent system of beliefs" (Chavez et al 1995: 43). For example, Perez-Stable states, Latinos are more likely than Anglos to beli eve that having cancer is like getting a death sentence, and that they would prefer not to k now if they had incurable cancer or that 'destiny cannot be changed' (Perez-Stable et a l 1992). The authers di not elaborate any further. According to Hunt (Hunt et al 2004) public health efforts to objectively model cultural influences on health tend to operationaliz e ethnic culture as a level of
23 acculturation, which is usually measured with accul turation scales commonly used in Hispanic or Latino health studies (p. 974). In a sy stematic literature review on the use of acculturation in Hispanic health studies, she found that most of the studies reviewed consistently characterized Hispanic culture either as a source of dysfunction or as a therapeutic panacea (p. 980). According to Hunt ( Hunt et al 2004), in this model culture is understood as primitive and natural, either d isruptive and degenerate, or pristine and harmonious, but always instinctive and inherent rat her than rational and intentional (Lucas & Barrett 1995). Two themes that often emerge in the Hispanic liter ature on cancer are fatalism (Chavez et al 1997a) and misconceptions (Perez-St able et al 1992). Fatalism is described as a general outlook on life founded on the beliefs that life events are inevitable and that ones destiny is not in ones o wn hands (Davison, Frankel and Smith 1992 cited in Chavez and Hubbell 1997). According t o Balshem, by labeling beliefs as fatalistic, there is no need to look further into t he communitys or individuals etiology they are dismissed as illogical or misconceptions ( 1991). The process of medicalization makes the health beliefs that are incongruent with the biomedical model the "material for the construction of a negative other and are part o f what makes the 'hard to reach' population inscrutable" (1991 p. 164). This is ofte n seen in the public health/medical literature related to Hispanics cancer beliefs whe re this population is presented as being noncompliant and fatalistic, where researchers deem ed to place an overemphasis on either faith or folk models of illness that are in correct. For the most part, these arguments are informed by the cultural, symbolic an d political context of biomedicine that has served to disconnect health professionals from understanding these patients realities and everyday lives (Moore 1999).
24 Even though Chavez states that cultural beliefs su ch as fatalism were used in the 1950s and 1960s as a simple way of explaining health behavior by blaming the victim (2001), he co-authors an articled titled T he Influence of Fatalism on SelfReported Use of Papanicolaou Smears in a medical j ournal. To examine fatalistic beliefs, the authors asked a series of questions. F or example, they asked the interviewees if they agreed with the following stat ements: Having cancer is like a death sentence and There is very little I can do to pre vent cervical cancer. They conclude that fatalistic beliefs are among the factors that negatively influence Latinas use of Pap smears and that it is important for health care pro fessionals to address those beliefs (1997 p. 418). This article does not frame the wome ns responses within the larger social context. Perhaps, because of their life experience with cancer e.g., everyone they ever knew of who had cancer in their own country died, o r they lacked the resources to get proper treatment and follow-up care. It made comple te sense for them to see cancer fatalistically. However, simply recommending that it is important for health professionals to address those beliefs does little and if anything contributes to the construction of the negative other (Balshem 1991) In this article, Chavez et al. fail to address the social context and shared cultural unde rstandings that inform such beliefs. As Mathews et al. eloquently state, efforts to er adicate "fatalism" by providing them with educational materials obviates the need for pr ofessionals to understand patients' beliefs within the broader social context (Mathews et al 1994a). Of the anthropological studies on Hispanics/Latino s and cancer, none have examined Hispanic womens cancer experience after c ancer diagnosis in the United States. The work by Chavez et al. (1995) primarily focuses on cancer prevention; the authors interviewed healthy women about their cance r beliefs and use of cancer screening programs. While Hunt addressed issues rel ated to diagnosis and treatment
25 among women in Mexico, her findings may not be gene ralizable to Latina women living in the United States who are undergoing, or have un dergone, cancer treatment as the health care infrastructure here is different and th e immigration process undoubtedly will influence their cancer experience (Hunt 1993; Hunt 1994). In the public health arena, there have been an inc reasing number of published studies on Hispanic/Latinas and life after cancer f ocusing on diagnosis, treatment and survivorship, but, very few have included an anthro pological perspective. In addition, although the literature on Hispanics/Latinos and ca ncer is increasing, it is surprisingly small compared to the literature published on cance r in other ethnic groups such as African Americans. In summary, anthropological rese arch has a role to play across the cancer continuum, from prevention to survivorship a nd palliative care and can great contribute to our understanding of cancer (Manderso n 1999b: 317). Section 2: Theoretical framework: Critical biocultu ral anthropology Medical anthropology has sought to integrate the b iological and physiological with the cultural (Whiteford & Bennett 2005). Studi es based on a biocultural framework build on tenets of human biology, political economy and medical ecology. They include social, cultural and/or behavioral variables in the study design (Goodman & Leatherman 2001; McElroy & Townsend 1996; Singer 2007) and off er valuable models for studying the interface between physiological, psychological and cultural factors that have an effect on human well-being (Baer 1996; Singer 2007) The strength of this approach is its potential for holism and integration. It establ ishes a context for human action (agency) within the interaction of biological, physical, and social environments (Leatherman 1996). Adaptation has been a core feature of the biocultu ral framework and has also been a concept that has caused much debate in medic al anthropology (Singer 2001a; b; Wiley 1993). Medical anthropologists have extended this concept to behavioral and
26 cultural domains. McElroy and Townsend define adapt ation as changes or modifications that enable a person or group to survive in a given environment, which includes both the social and physical environment (McElroy & Townsend 1996). Furthermore, they identify four types of adaptive mechanisms: genetic change, physiological and developmental adjustments, cultural responses, and individual cop ing (McElroy 1990 p. 249). Components of this model are appropriate for organi zing data on human responses to disease (e.g., breast cancer), disability, loss, an d life transition and include a range of cultural, social, cognitive, hormonal, and immunolo gic systems (ibid) However, the medical ecology model proposed by McElroy has been criticized for overlooking the political economic aspects that influence health an d disease (Brown et al 1996). Thomas (2001) states that the expanded scope of human adap tability attempts to understand the dynamics of how people adjust to constraints ar ound them using their biology, behavior, social organization, and ideology (Thom as 2001: 70). Singer goes on to say that we need to develop a dialectical, biocultural anthropology that incorporates political economy and that adaptations might be better anal yzed as social adjustments to oppressive sociopolitical relationships (Singer 200 1a: 115) that include the analysis of how processes of inequality and social change inter act with human biology (Goodman & Leatherman 2001). According to Goodman and Leatherman, the political economic perspective brings the following contributions to biocultural a nthropology: 1) the examination of social relations, which are essential to resource producti on and distribution, and points to the need to look at social processes; 2) the importance of the links between the local and global; 3) that history is critical to understandin g the direction of social change; 4) that humans are active agents in constructing their envi ronments; and 5) ideology and
27 knowledge of researchers and study participants are key to understanding human action (Goodman & Leatherman 2001). A biocultural model is helpful for organizing fact ors related to health and disease, especially among immigrant populations (Janes & Paw son 1986). Janes, who has examined the social consequences of migration and t he mediating role of social support, posits that this model embraces both the local cult ural system of which that individual is a member and the wider social environment in which they live (Janes 1990). In addition, a critical biocultural framework allows one to addr ess the coping responses of human agents (Leatherman 1996). Further, this is a fittin g approach since the researcher is interested in: 1) immigrant womens health (specifi cally from Latin America and the Spanish-speaking Caribbean) within the context of t he US health care system, specifically oncology; 2) the impact of migration o n womens social support networks and how these changes may or may not influence their we ll-being, quality of life and adjustment to breast cancer; and 3) how the social support resources used by Latinas can serve to mediate some of the structural factors that affect access to information, access to care and ultimately survival. Contextualizing social support Researchers in anthropology, psycho-oncology, soci ology, social epidemiology, and psychology have explored how social support, so cial integration and social relationships influence health and disease. Social relationships and coping resources influence both psychological and physical health (B erkman & Glass 2000c; Berkman et al 2000; Cohen 2004b; Cohen & Syme 1985b; Wortman & Conway 1985). Several anthropologists have examined the concept of social support from an ecological, biocultural perspective (Berges et al 2006; Dressle r 1991; 1992; 1998; 2004; Dressler et
28 al 1986; Jacobson 1987; Janes 1990; Janes & Pawson 1986; Kagawa-Singer & Pourat 2000; Kagawa-Singer et al 1997). Dressler states that social support systems are hi ghly variable across cultures. In Mexico he found that for men the strongest effect o f social support on blood pressure was for the level of perceived support from compadres, and for women it was the level of perceived support from family members (Dressler 199 6). In a southern African American community in the United States, the most important forms of social support were organized within the context of intracultural diver sity. Older individuals saw extended kin as the most important source of social support, whi le younger individuals saw non-kin systems of social support as most relevant (Dressle r 1985; 1993). In St. Lucia, Dressler observed social support systems developed through t he household unit (Dressler 1984). The cultural construction of access to social suppo rt in relation to blood pressure and psychological distress was investigated by Dressler in Brazil (Dressler et al 1997; Dressler et al 1996). Janes study of Samoans who h ad migrated to California during the time period of the 1960s to the 1980s presents th e following social organization of support. He found that Samoans extended kin group i s a vital source of mutual support (Janes 1990). Kagawa-Singer observed differences in the support systems used by Asian and Euro-American women diagnosed with cancer Japanese Americans provided more tangible support than emotional support, the n etworks were significantly smaller, and the members of the networks primarily consisted of immediate, female family members (Kagawa-Singer et al 1997). Jacobson states that the study of social support o pens a window into the structures of meaning that constitute culture (Jaco bson 1987). In most studies of social support there is little consideration given to the ways in which appropriate social relationships are socially and culturally construct ed and to the ways in which
29 sociocultural systems may construct choice in socia l relationships (Dressler 1996). According to Dressler, many of the studies on socia l support and health are based on a narrowly focused model that is mainly concerned wit h the amount and quantity of social support. What is missing from current formulations regarding social support is the recognition that within specific societies the sort s of emotional and instrumental transactions that make up social support are not ap propriate for just any category of social relationship. Rather different kinds of r elationships are culturally defined as having different kinds of reciprocal rights and obligations. To seek supportive transactions outside of the relationship is to tran sgress cultural norms, which in turn may interfere with the social and psychologica l processes that are conducive to better health (Dressler et al 1997: 306). Further, Janes and Dressler discuss resistance res ources, which include social support and personal coping resources (Dressler 199 6; Dressler et al 1997; Janes 1990). Dressler has attempted to understand the cop ing styles and emotional health among African Americans in the Southern United Stat es. He posits stress is a result of an individual being faced with environmental demand s and having few resources to cope with those demands. Resistance resources include ex tended kin and friends, churches, clubs, personal self-reliance, and an active coping style rather than passive responses. People with low resistance resources are more likel y to experience health problems (Dressler & Bindon 2000). From a biocultural perspe ctive, resistance resources consist of those factors or processes that facilitate the f it of humans to their social environment or in a psychological sense assist with tension man agement (Janes 1990 p. 130). Social environment, social relationships and health Cohen differentiate studies that examine the struc tural measures of social support (i.e., describing the existence or quantity of relationships) and functional measures of social support that assess whether int erpersonal relationships serve particular functions (e.g., describing kinds of sup port provide affection, feelings of belonging or material aid) (Cohen 2004a). Social in tegration is a multidimensional
30 construct defined as participation in a broad range of social relationships that include active engagement in a variety of social activities or relationships, identification with ones social roles and a sense of communality (Bris sette et al 2002). This concept stems from Durkheims influential work on suicide and soc ial conditions. Theoretically, the sense of social solidarity, mutual support and aid within a social group, is an essential aspect of social interaction that contributes to be tter functioning and health (Dressler 1996). Cohen (2004) states that social integration influences ones sense of self and that role concepts are shared among a group of people, a nd I would argue are guided by cultural norms and values that provide a common set of expectations about how people should act in different roles. In meeting these rol e expectations, individuals develop a sense of predictability, stability, identity, purpo se, belonging, and self worth (Berkman et al 2000; Cohen 2004b; Thoits 1986). Further, Berkma n and Glass (2000) hypothesize that social integration or connectedness has been a strong predictor of mortality because these ties give meaning to an individuals life by virtue of enabling him/her to participate in it fully to be obligated and conne cted to ones community (p. 147). Figure 2.1. Conceptual Model of Social Environment and Social Support Adapted from Berkman and Glass 2000:.143
31 Berkman and Glass (2000) illustrate a conceptual mo del of how social relationships influence health. They begin with bro ader macro level conditions and end with the psychobiological processes by which social integration affects health (Figure 2.1). The model proposed by Berman and Glass embeds social networks and social support within the larger social and cultural conte xt in which macro social forces related to political economy mediate opportunities for soci al support. This framework enables researchers to examine how culture, social change, migration, and urbanizatin affect the structure of social networks and social support (Be rkman and Glass 2000 p. 144). Cohen and Syme (1985) argued for a contextual under standing of social support and suggested that the social environment in which supp ort occurs substantially influences the nature of support and its effects on health (Dr essler et al 1986). This perspective is holistic and integrative in that is focuses on the process and cultural context of health and disease, while addressing the larger social env ironment. This model fits in with the tenets of a political-economic biocultural anthropo logy. Stress and social support The influence of social and cultural stressors on h ealth is ultimately dependant on the psychological and social resources individua ls possess that enable them to cope (Janes 1990). The most widely used stress-related m odel of social support is the buffering model (Lehto-Jarnstedt et al 2004). Accor ding to the model, social support is beneficial because it decreases the negative effect s of stress on both physical and mental health (Cohen 2004a; Cohen et al 2000; Cohen & Syme 1985b) and serves as an intervening variable that modify the health outc omes of exposure to a variety of stressors. According to Uchino (2004), this model s uggests that life events (e.g., migration, cancer diagnosis) and daily challenges u ltimately have their influence on wellbeing by what is called the appraisal process (pg. 36). This is a psychological process in
32 which information from the environment is processed in reference to our perceived coping abilities (Turner-Cobb et al 2004; Uchino 20 04). The stress buffering model of social support posits that even when an individual is faced with an extremely stressful event, having individuals who can provide a person with support can help reduce the intensity of the stress response and facilitate cop ing over the long term (Cohen & Syme 1985b). Chronic stressors are challenges, problems and dif ficulties people encounter in their daily life (Israel et al 2002; Schulz et al 2 001). Chronic stress is the result of sociocultural and structural pressures or stressors that are imposed on individuals on an ongoing bases (McElroy & Townsend 1996). Janes fou nd that social inconsistency, the inability to meet behavioral or social expectations associated with status, were sociocultural stressors for Samoan migrants in Cali fornia (Janes 1990). Examples of structural stressors include poverty, lack of insur ance, employment, and finances. Stress is an individuals response to any kind of challeng e whether positive (e.g. moving to a new country) or negative (e.g., cancer diagnosis) a nd how an individual copes and adapts to the situation (Israel et al 2002). An adequate model of the relationship between stre ss, social support and wellbeing must consider individual differences in need or desire such support, as well as the social and environmental context in which support i s perceived, mobilized, given, and taken (Cohen & Syme 1985b). The emphasis is on the buffering model, in which support serves as a resource in response to stressful even ts (Berkman & Glass 2000c; Cohen 2004b; Cohen & Syme 1985b; Dressler 1996). The stre ss-buffering model asserts that social connections benefit health by providing mate rial and psychological resources necessary to cope with stress (e.g., diagnosis of c ancer is a stressful event). Additionally, this model of social support predicts that social support is beneficial for
33 those suffering adversity, but does not play as sig nificant a role for those without highly stressful demands (Cohen 2004b). Thomas (2001) sta tes special attention should be given to the efficacy of social support systems in buffering the effects of psychological stress and disease. This is especially relevant to studies of social support among the poor and underserved who may be the most vulnerable to political economic stressors. Further, by examining how social support may shift from facilitating adjustment to the system to reformation and transformation may provi de insights into health by combining ethnomedical and biomedical perspectives (Thomas 20 01: 69). Social support, health and disease The majority of the research on the topic of socia l support and cancer-related health outcomes stems from the area of psycho-oncol ogy. The concept of social support is multifaceted and relates to many aspects of canc er survivorship (e.g., adjustment, well-being and other cancer-related health outcomes ). Social support is a multidimensional construct and is transactional in nature, involving both giving and receiving guided by cultu ral norms of interdependence, solidarity and reciprocity (Berkman & Glass 2000b). It is a mediating pathway by which networks might influence health status (Berkman & G lass 2000c; Berkman et al 2000). Social support is typically divided into subtypes t hat include: 1) emotional (love, caring, sympathy, understanding), 2) instrumental (help, ai d, assistance with tangible needs), 3) appraisal (help in decision making), and 4) informa tional support (provision of information or advice) (Berkman & Glass 2000c; Bloo m et al 2001; Cohen 2004a). Definitions of emotional support are broad; the mo st frequently cited type of support is the individuals ability to confide in o ther members of their social network about health related problems (Bloom et al 2001; He lgeson 2003). Appraisal support has been defined as an agreement with ideas or feedback that leads to self validation
34 (Wellisch et al 1999). Instrumental support is gene rally defined as assistance with material or financial aid, tasks, goods and service s (Berkman & Glass 2000c; Bloom et al 2004; Bloom et al 2001), being able to call on s omeone for assistance (Koopman et al 1998) and assisting with chores and other household tasks (Gotay & Wilson 1998; Lugton 1997). Informational support is less frequen tly studied than the other types of support (Helgeson 2003). When this type of support has been studied, the researchers usually focused on information available from forma l educational programs, health professionals, and/or support groups (Cope 1995; Co reil et al 2004; Samarel et al 1998b; Samarel et al 2002). Social support is transactional in nature, involvi ng both giving and receiving guided by cultural norms of interdependence, solida rity and reciprocity (Berkman and Glass 2000 citing George 1986). According to Cohen and Syme, determinants of the availability of support include community size and resources, socioeconomic status, customs, cultural norms, values and beliefs about w hen it is appropriate to ask others for help (1985). Results from studies in the area of c ardiovascular disease, stroke and other chronic conditions suggest that social suppor t may have the greatest impact on determining the prognosis and survival of disease, not the onset (Berkman and Glass 2000). The strongest associations between social support (particularly emotional support) and a health outcome are seen in relation to psychological well-being (Cohen 2000; Uchino 2004). Many believe that the perceptio n of the availability of support is more important than its actual use (Cohen 2004a; Co hen & Syme 1985b). Perceived social support leads individuals to believe they ar e cared for and that they belong to a network of mutual obligation (Sammarco 2001a; b). T he feeling of being supported
35 comes from the sense that ones individual sufferin g and pain are important to someone whom the cancer survivor sees as central to their s upport network (Spencer et al 1999). Section 3: Social support and breast cancer: Surviv al and psychosocial adaptation In the next few paragraphs, the concept of social s upport as it relates to cancer survival and psychological adaptation is discussed. Social isolation increases mortality risk from cancer (Fawzy et al 1993; Funch & Marshal l 1983; Spiegel 1993). Several studies have illustrated the importance of social s upport in the length of survival from cancer (Ell et al 1992; Kelly 1998; Maunsell et al 1995; Spiegel 2001; 2002). Researchers have reported that a higher level of so cial support or social integration is associated with better survival outcomes among wome n diagnosed with breast cancer (Kroenke et al 2006; Maunsell et al 1995; Reynolds & Kaplan 1990). Women diagnosed with breast cancer and living beyond initial treatm ent continue to experience physical and emotional symptoms. Information and support nee ds persist well past the initial diagnosis (Cappiello et al 2007). Instrumental supp ort after a breast cancer diagnosis may assist women by taking them to doctor appointme nts, nutrition and mobility, thus protecting against disability (Kroenke et al 2006). On the other hand emotional support may reduce stress, which might improve immunosurvei llance against cancer recurrence (Turner-Cobb et al 2000). Thus, some research sugge sts that emotional support be more critical for breast cancer survival than emoti onal support. Following treatment women have reported having less social support from family, friends and providers; however, the need for resources and support through the transition to survivorship may be just as critical as during the initial diagnosis and treatment (Davis et al 2004; Ganz et al 2004; Institute of Medicine 2006; Lethborg et al 2003). The literature states that long
36 term cancer survivors continue to have physical and psychosocial support needs years after treatment (Institute of Medicine 2006). A study of stressful life events, social integrati on and survival from breast cancer found that stressful life events were associated wi th lower rates of survival and social integration was associated with higher survival rat es (Funch & Marshall 1983). One study that examined the relationship between social support and cancer incidence, mortality and prognosis during a 17 year follow-up period found that socially isolated women had a considerably elevated risk of dying fro m cancer (Reynolds & Kaplan 1990). Interestingly, a similar study (Ell et al 19 92) compared survival among women who had been diagnosed with either breast, colorect al or lung cancer. They found that marital status and perceived adequacy of emotional support approach significance (p=.08) only for those diagnosed with breast cancer and only with breast cancer was social support a protective factor predicting survi val (p.535). However, it is important to note that some studies that have explored this rela tionship have been inconclusive (Blanchard et al 1995). Cassileth, reported no rela tionship between social integration and survival, or time to recurrence of disease amon g patients with advanced-stage cancer and concluded that the inherent biology of t he disease alone determines the outcome (Cassileth et al 1985). During the last two decades, much attention has bee n paid to the psychological well-being of cancer survivors (Ashing-Giwa et al 2 004a; Ashing-Giwa et al 2004b). Numerous studies report the beneficial impact of so cial support on womens psychological well-being and coping ability through every stage of breast cancer illness from diagnosis to treatment and beyond (Hoskins et al 1996; Lugton 1997; Maunsell et al 1995).
37 Social support plays a crucial role in both the phy sical and mental adjustment to the diagnosis of breast cancer and its treatment (C assileth et al 1985; de Groot 2002; Holland & Holahan 2003; Hoskins et al 1996; Schroev ers et al 2003; Zemore & Shepel 1989). Social support is associated with positive o utcomes including coping and adaptation (Bloom 2002; Holland & Holahan 2003; Kag awa-Singer & Pourat 2000; Kagawa-Singer & Wellisch 2003; Kagawa-Singer et al 1997; Michael et al 2002; Samarel et al 1998b), stress management (Samarel et al 1998a), identity (Lugton 1997), less anxiety and depression (Bloom & Spiegel 1984; Hann et al 2002; Schroevers et al 2003), decreased symptom distress and better functi onal status (Spiegel 1993; Spiegel & Giese-Davis 2003), self esteem (Schroevers et al 2003), optimism (Trunzo & Pinto 2003) and quality of life (Ghazinour et al 2004; Mi chael et al 2002; Sammarco 2003), and overall well-being (Dirksen & Erickson 2002). C ancer diagnosis (a stressful event) and survivorship provides a useful context to exami ne social support processes (LehtoJarnstedt et al 2004). The negative aspects of social support on women di agnosed with cancer are discussed less frequently (Schroevers et al 2003). As an example, a negative impact can occur when there is a mismatch between desired support and support that is received (e.g., when friends and neighbors withdraw from contact) (Reynolds & Perrin 2004). Researchers should understand that intended support may be perceived as helpful by some and negative by others. For example in a study of breast cancer patients (Peters-Golden 1982) researchers found tha t approximately 75% of the participants agreed that people treated them differ ently after learning they had cancer, and of these 72% reported that they were misunderst ood by others and over 50% felt they were being avoided or feared. Another example of a negative impact is when there is a perceived lack of social support that is expec ted (this would only be substantively
38 different from the first case if it isnt the suppo rt itself that is lacking, but the perception thereof). This was illustrated in a study by Landma rk (2002) in which participants reported that the perceived lack of social support from the hospital where they received their cancer treatment was a huge strain and psycho logical burden to them (Landmark & Wahl 2002). Changes in social support after the diagnosis of c ancer have also been noted (Davis et al 2004). Researchers have found an incre asing need of social support over time since diagnosis among breast cancer survivors, thus implying the need for support lasts well beyond the initial acute period of diagn osis and treatment (Hoskins et al 1996). However, several studies report that the frequency of social support since time of diagnosis actually decreases over time since diagno sis creating a possible disconnect between support needed and support received (Bloom et al 2004; Courtens et al 1996; Neuling & Winefield 1988). Multicultural perceptions of social support The benefits of social support as a resource for pe ople with cancer have been investigated, as described previously; however, mos t of the studies conducted among women diagnosed with breast cancer on the topic of social support have tended to focus on Euro-American women (Ashing-Giwa et al 2004b; Ma kabe & Hull 2000). In recent years, few researchers have explored, in-depth, the concept and use of social support among diverse ethnic groups (Ashing-Giwa et al 2004 b; Hamilton & Sandelowski 2004b; Kagawa-Singer & Wellisch 2003; Makabe & Hull 2000; Moore 1999; Moore 2001; Wellisch et al 1999). Interestingly, when African A merican patients, for example, have been included in research, the discovery of lower a mounts of social support have lead investigators to conclude that African Americans ar e socially isolated and lack social support (Rodrigue 1997). Similar conclusions have b een made about social support
39 among Chinese and Hispanic cancer patients (Alferi et al 2001; Chan et al 2004; Katapodi et al 2002). Culture affects the social support experiences of patients with cancer (AshingGiwa et al 2004b; Aziz & Rowland 2002; Erwin et al 2007; Hamilton & Sandelowski 2004b; Kagawa-Singer & Wellisch 2003; Makabe & Hull 2000; Moore 1999; Moore 2001; Wellisch et al 1999). However, according to Hamilto n and Sandelowski, most studies of social support do not clearly address whether lower amounts of social support actually result from a lack of resources or if it is the fai lure of researchers to identify them due to cultural differences in social support that might n ot fit the biomedical paradigm (Hamilton & Sandelowski 2004a). Interestingly, non-verbal sup port, as described by Kagawasinger (1997; 2003) and Hamilton et al. (2004), is rarely considered and most social support questionnaires do not ask about this type o f support (Wellisch 1999). This omission may be due to the fact that in biomedical and mainstream American culture much more value is placed in verbal communication t han in non-verbal communication. Another form of support not usually addressed in t he literature is the use of distracting activities as a type of social support (Moore 1999). Hamilton et al. (2004) found that participants felt supported when their s ocial networks provided opportunities for distraction. Thoits has argued that behaviors u sed to assist individuals to change the meaning of stressful situations are forms of social support. In addition, offers of prayers and assistance to maintain valued social roles in t he family and in the church are rarely discussed. Another form of support left out of most of the literature on social support and breast cancer is the influence of the church and of fering of prayer as a form of instrumental support (Thoits 1986; 1995). Hamilton et al. (2004) found that among the African American participants in their study the mo st frequent type of emotional support
40 was the presence of others, which was described as the non-verbal expression of love and caring. We need to expand our understanding of the types o f emotional and informational support used by ethnic, minority grou ps who may have fewer opportunities to interact or access health care professionals and may rely more on informal networks (Burhansstipanov et al 1998; Guidry et al 1997a; Ha milton & Sandelowski 2004b). Learning about and understanding the informal netwo rks and types of support used by members of these groups can be an invaluable tool f or developing interventions that build on the strength and support resources of thes e communities (Gotay & Wilson 1998). Immigration, social support and health Studies on the health advantages of foreign-born Hi spanics/Latinos have suggested that one of the favorable health advantag e of the foreign-born is the cultural value that emphasize family cohesion and social sup port (Palloni & Arias 2004; Zambrana et al 1997). Suarez, suggests that family members and friends often encourage health promoting behaviors (Suarez 1994) that the social support provided by family reduces stress (Landale & Oropesa 2001; Vega & Amaro 1994). Studies have found that chronic disease mortality p atterns for immigrants and the US-born vary considerably and in many cases are mor e favorable for immigrants (Singh and Miller 2004). For example, Singh and Miller (20 04) relay that black male and female immigrants had a least a 35% lower total cancer mor tality than US Born blacks. They suggest one of the reasons for this may be that imm igrants may have a higher level of social support and social integration compared to t he US Born (p.17). Some have suggested that high levels of social support among Mexican immigrants in the United States has in part contributed to their favorable h ealth status (Finch & Vega 2003).
41 Assessing the meaning of support for those who expe rience it is also important if we want to better understand its protective function, especially for immigrants (Simich 2003). In contrast, other scholars have argued that the pr ocess of migration disrupts social ties (Portes 1998), which are rebuilt only a fter an extensive period of time of residence in the destination area (Goodwin et al 19 91). This disruption weakens social support, causing immigrants to loose a major source of social capital, the network of social relations that entail reciprocal commitment, social support, and social control (Zhou 1997). Within this rubric, migration has a ne gative impact on psychological and social functioning (deSnyder 1996) that involves ma jor changes in the physical, cultural and social context within which individuals and fam ilies have learned to function and cope with illness and disease (Ebaugh & Curry 2000; Hanline & Daley 1992; Kramer et al 1999; McNeece et al 2002). Immigration is a major life event (Alegria et al 2 004; Foroughi et al 2001; Janes 1990). It is a process that may bring particular st resses that may influence peoples social support resources and social environment (Zu niga et al 1999) and its effects can persist for years after migration (Dressler 1996; G oodwin et al 1991). Several scholars have explored the concept of social support among i mmigrant populations (Holroyd et al 2001; Katapodi et al 2002; Landale & Oropesa 2001; Markovic et al 2002; Matsudaira 2003; Meana et al 2001; Neufeld et al 2002; Simich et al 2003) and suggest that the disruption of social ties associated with immigrati on can remove culturally expected sources of assistance and diminish available social support (Neufeld et al 2002; SuarezOrozco & Paaez 2002; Triandis 1995). The immigrati on experience typically implies that some family and friends will be left behind in the country of origin (Berry 1997; Neufeld et
42 al 2002; Suarez-Orozco & Paaez 2002; Triandis 1995 ), thus the separation from family and friends ruptures the support system many immigr ants were accustomed to. Due to language, culture and economic issues, immig rants will often find themselves without the social support and networks that had enabled them to cope and function (Zuniga 2002) and isolation may become an issue, especially for those who may have already suffered familial, resource, and n etwork loss (ibid). Similarly, researchers in psycho-oncology have reported change s in the social support systems of women diagnosed with breast cancer, where changes i n appearance and decreased physical and social functioning may affect their ab ility to carry out social roles and responsibilities, which may lead to changes often r esulting in decreased social support (e.g., friends and family withdraw) and increased i solation (Landmark et al 2002; Luoma & Hakamies-Blomqvist 2004; Manne et al 2004; Michae l et al 2002). Furthermore, gender role is of special importance, because it di ctates the kinds of support deemed appropriate (Kagawa-Singer & Wellisch 2003; KagawaSinger et al 1997; Moore 2001). For example in study comparing social support among Asian and Euro-American women researchers found that cultural beliefs regarding f amily role and womens roles affected social support (Wellisch et al 1999). Although migration challenges peoples adaptive cap acity, its impact on health is a product not only of those stressors resulting fro m these experiences but also of the contingencies surrounding them (Simich et al 2003). Social support from family and like ethnic community members is one of the most powerfu l of these contingencies (ibid). Living close to others from your own country or of the same ethnicity also provides a supportive social environment (Zuniga 2002). Often members of such ethnic communities serve as cultural brokers sharing their experiences and providing information about available resources, provide link ages to social activities, religious
43 organizations, and local health care providers. Fam ily, extended family, and ethnic communities provide immigrants with significant soc ial supports, both emotionally and economically (Kramer et al 1999; Vega & Amaro 1994; Zambrana et al 1997). The use of these informal and formal networks is crucial, a nd for many immigrants they serve as a screening and referral agent for community resour ces and health care related services (Neufeld et al 2002). Reports indicate that informa l social networks offer vital assistance to Latinos who are coping with stressful situations (Guidry et al 1997a; Kramer et al 1999) and that Latino immigrants are more vulnerabl e to stress precisely because they may lack extended-family supports (Gomez et al 2004 ; Sluzki 1992; Suarez-Orozco & Paaez 2002). Social support and Latinas within the health contex t Several researchers have examined the role and use of social support and social networks among Hispanic/Latina women within the hea lth context, (AbraidoLanza et al 1996; Alferi et al 2001; Cortina 2004; Martinez-Sch allmoser et al 2003; Scarinci et al 2003; Suarez et al 2000). From this literature the following themes emerge; 1) differences in social support are related to langua ge (Spanish vs. English) (Katapodi et al 2002; Martinez-Schallmoser et al 2003), and to a cculturation/ length of time in the US (Finch et al 2003; Flaskerud & Uman 1996; Hovey et al 2000; Smart & Smart 1995), and 2) there are cultural and social norms guiding supp ort interactions that mediate the buffering effects of social support (Abraido-Lanza 2004a; Abraido-Lanza et al 2005; Abraido-Lanza et al 1996; Alferi et al 2001; Cortin a 2004; Gotay & Wilson 1998; Suarez et al 2000). Interestingly, both Alfreri et al (200 1) and Suarez (1994) found that although family has been identified as a key resource of sup port for Hispanics their study findings did not fit this picture. Katapodi et al (2002), ex amined womens reported social support and their adherence to cancer screening guidelines. Overall foreign-born Latinas
44 reported significantly lower mean social support sc ores compared with the EuroAmerican and African American women in the study. I nterestingly, the Latina women born in the United States had a significantly highe r social support score compared to those that were foreign-born. Also mean social supp ort scores differed significantly by spoken language, those who answered the survey in S panish had lower scores (Katapodi et al 2002). Latina immigrants may be mor e comfortable with accessing coping resources that are more compatible with thei r cultural belief system (Kramer et al 1999). Abriado-Lanza (1996) investigated psychosocial adj ustment to chronic disease in among Latinas with arthritis. Her findings reflect social and cultural norms related to available and appropriate types of support, where t angible support was related to less psychological distress and emotional support predic ted greater psychological well-being. Qualitative data revealed that women expressed ambi valent or negative feelings about receiving housework support, which they identified as being integral to their role as homemakers. Reports indicate that informal social n etworks offer vital assistance to Latinos who are coping with stressful situations (G uidry et al 1997b) and that Latino immigrants are more vulnerable to stress precisely because they may lack extendedfamily supports (Camino 1994). Past research suggest that support-provider charac teristics also influence social support perceptions and access (Hoskins et al 1996; Thoits 1986). Thoits states that empathetic understanding is one of the components o f social support and those individuals who share sociocultural characteristics with the person in need of social support are better able to empathize and therefore offer more effective and appropriate support (Thoits 1995). Cortina (2004) suggests that Hispanic women are most likely to
45 perceive supportive social relations from family an d close friends, who often share their background (Cortina 2004). In summary, determinants of the availability of su pport include community size and resources, socioeconomic status, customs, cultu ral norms, values and beliefs about when it is appropriate to ask others for help (Cohe n & Syme 1985a). Culture influences individual health and lifestyle behaviors, family, structure and social networks (Dressler et al 1997; Dressler & Bindon 1997; Palloni & Arias 2004). Culture also shapes the nature of the social environment and operates throu gh norms and beliefs about family relationships and obligations. Such norms and belie fs may influence the propensity to live alone of or in extended families, the density of social networks, and the amount of social support exchanged (Palloni & Arias 2004). Restating research hypothesis Thus, personal observations, participant observatio n and the literature guide the following hypotheses that are tested through the dissertation research: H1. Cultural expectations about gender roles will i nfluence social support: H1.a., Compared to women, a higher proportion of me n will likely provide instrumental/ tangible support, and a higher propor tion of women will likely provide emotional support, compared to men. H1.b., Cultural expectations that women should not burden family and friends with personal concerns/worries will negativ ely influence social support. H1.c, Cultural expectations to be strong ( aguantar /tolerant) will negatively influence social support. H2. Language (English proficiency) will be positive ly associated with social support. H2.a, Women with limited English proficiency will b e less likely to have informational support than those that who are Engli sh proficient. H3. Chronic stress (poverty, family problems, econo mic/financial problems, immigration status) will be negatively associated w ith social support.
46 H4. Length of time in the United States will influe nce social support. H4.a., Women who have been in the US a shorter peri od of time will likely rely on family and friends in their native county f or emotional support. H4.b., Women who have been in the US for a shorter period of time will likely have less informational support than those w ho have resided here longer. Figure 2.2 illustrates the conceptual model of soc ial support I propose to explore through the dissertation research. Cultural beliefs and expectations, length of time in the US, English proficiency and chronic stress are expl ored in relation to social support. The dotted lines represent expected associations. I t is also noted that the influence of these variables on social support and the individua l (micro) with breast cancer occur within a larger context that includes structural fo rces (macro) and social environment. Figure 2.2 Conceptual Model Immigration Experience and Social Support Breast cancer Individual English proficiency Cultural beliefs and expectations Chronic stress Length of time in the US Immigration Economy Politics Health care system Social Organization Gender Poverty SES Education Age Marital status Breast cancer Health History nr
47 Section 4: Breast cancer This section provides a brief review of the epidem iology of breast cancer and is used to describe the diagnosis and treatment proces s and situate the disease experience within the biomedical context. The first part of this section describes the disease of breast cancer (screening and detection; diagnosis, staging and prognosis; and treatment). Second, trends in the incidence, mo rtality and prevalence of breast cancer are discussed. Breast cancer risk factors ar e discussed in part three, and factors associated with poorer survival are delineated in p art four. Finally, a summary is provided with special attention given to the curren t gaps in the epidemiological data. Breast cancer is the most common type of cancer di agnosed in women in the United States (American Cancer Society 2003). While most breast tumors are benign, breast cancer is the uncontrolled growth of maligna nt breast tissue/cells. In situ cancer in the breast occur when the malignant cells are wi thin the milk ducts, ductal carcinoma in situ, or glands, lobular carcinoma in situ, wher e the cancer is localized it has not spread or invaded other parts of the breast. These cancers are most often detected through mammograms, since most are too small to be felt. If left untreated, ductal carcinoma in situ may grow and become an invasive c ancer with the potential to spread to other parts of the body (Berkow 1997). Lobular c arcinoma in situ usually occurs in women experiencing menopause. There is a high risk it will develop in both breasts, therefore both breasts are treated. Cancer becomes invasive when the cancer breaks thr ough the wall of the ducts or glands. Invasive cancers can be localized, i.e., confined to the breast, or metastatic, where it spreads to other parts of the body. The mo st common type is ductal carcinoma, which occurs in about 75% of the women with invasiv e cancers (Olivotto et al 2001). Lobular carcinomas, which account for 15% of invasi ve cases, are estrogen receptor
48 positive, which means they are likely to respond to hormonal treatments (Love & Lindsey 2000). Inflammatory carcinomas are much less common The breast becomes swollen and the skin turns red. It is an aggressive cancer that usually spreads to the lymph nodes. Detection, prognosis and treatment The first stage of cancer is when the tumor is sma ll and most treatable. Usually, the first sign of possible breast cancer is a lump or a change in the breast(s) (e.g., changes in shape/swelling, puckering/dimpling of th e skin that does not go away, and/or scaly skin around the nipple). In more than 80% of breast cancer cases, the woman finds the lump herself (Berkow et al 1997). The siz e of the cancer can vary. Screening is especially important because early stage breast can cer exhibits few symptoms. The earlier the cancer is detected, the less radical th e treatment and the better chances for survival (Love & Lindsey 2000). Currently, there ar e three screening techniques for detecting breast cancer: breast self exams (BSE), b reast clinical exams (BCE) and mammography. When a potentially cancerous lump is found, a biop sy is performed. Then, if cancerous cells are found, more test are performed to determine the characteristics of the cancerous tumor (e.g., size, type, grade degr ee of aggressiveness, biomarkers, growth rate, estrogen and progesterone receptors an d lymph nodes affected). The characteristics affect prognosis and determine the treatment (e.g., surgery, radiation, chemotherapy, etc.) the woman will receive. There a re three general types of breast cancer surgery: lumpectomy and quadrantectomy, whic h are breast-conserving, and mastectomy, which removes the entire breast. Breast conserving surgery attempts to leave as much of the breast as possible, only remov ing the tumor and a small amount of surrounding tissue. The major reason for having bre ast-conserving surgery is cosmetic
49 to preserve body image. However, the treated breast often shrinks and may change in contour (Love & Lindsey 2000). In a simple mastecto my, the entire breast is removed; however, the muscle beneath is left intact. The lym ph nodes may be removed to determine if the cancer has spread, this procedure is called node dissection/sentinel node biopsy. In a radical mastectomy, in addition t o the breast tissue, the underlying chest muscle, some nerves, the skin, and all of the lymph nodes in the armpit are removed (NationalCancerInstitute 2003). Survival ra tes for women who have an entire breast removed and for those who have breast conser ving therapy followed by radiation therapy appear to be similar for at least 20 years following the surgery (Berkow et al 1997). Breast reconstruction is an option for some women; this is dependant on the womens desire/ beliefs about reconstructive surger y, the type of surgery (e.g., simple vs. radical mastectomy), the extent of deformity, h er financial status, and/or insurance status/policy (Martinez 2004). There are several te chniques that can be used; for example, silicone or saline implants, tissue expand ers or tissue taken from another part of the body (Le et al 2005). If reconstructive surg ery is not a viable option, breast prostheses, which can be inserted into a special br a, are available and can be obtained through various cancer organizations. Supplemental treatments are administered as a prev entive measure after surgery. This is called adjuvant therapy, which inc ludes radiation therapy, chemotherapy, and/or hormone therapy. Depending upo n the cancer characteristics (e.g., stage, growth rate, etc.), a combination of treatments may also be administered. For advanced or high risk cancers, chemotherapy and /radiation is sometimes administered before surgery to reduce the size of t he tumor.
50 Radiation therapy uses high energy rays to kill ca ncer cells. Without radiation therapy, the likelihood of developing cancer in the same breast is as high as 40% over 10 years (Olivotto et al 2001). Radiation treatment is administered over a period of time. Treatments are usually given daily, for example, Mo nday through Friday for the duration of the treatment which can range from weeks to mont hs. Which may pose a burden to those who have difficulty with transportation (e.g. they do not drive or don not have someone to take them to/from the treatment facility ). Radiation therapy may also be used to improve the quality of life of patients who have recurrent cancer or suffer symptoms from metastasized cancer. However, there a re side effects to consider. The skin around the treated area becomes pinkish red, l ike a sun burn and sometimes peels after radiation therapy. Additional side effects in clude breast firmness, where the treated breast can become enlarged, tender and heavy with f luids. This can last 6-18 months post treatment (Love & Lindsey 2000) and/or the wom en may have feelings of sharp electric shocks and fleeting pain that result from damaged nerves. Red burst blood vessels may also appear 18-24 months after treatme nt (Olivotto & Levine 2001). Other major side effects are tiredness, fatigue during tr eatment and depression (Love & Lindsey 2000). Other organs and parts of the body a re also affected by radiation therapy, including the heart and lungs. The lungs m ay become inflamed a few weeks to several months after the treatment is complete; thi s condition is called radiation pneumonitis. Some studies have shown that women who receive radiation on the leftsided breast have an increased chance of developing heart disease (ibid). If the lymph nodes near the collar bone are treated, the throat may feel scratchy. There may also be scarring under the arm and on the chest wall. Chemotherapy and hormonal therapy are systemic tre atments that affect the whole body and travel through the blood stream (Nat ionalCancerInstitute 2003). The
51 agents used in chemotherapy target the cell divisio n/reproduction processes. Unfortunately, this treatment is not selective and attacks all cells that are rapidly dividing, including hair and bone marrow cells in addition to cancer cells. Treatment with several chemotherapy agents given together are sometimes be tter at preventing recurrences and are more effective than one agent alone (Berkow et al 1997). Chemotherapy drugs may be given intravenously or orally. The duration of the treatment regimen can last from three to six months. It may take several hours to administer the chemotherapy intravenously. During each session, the patient can spend up to 6-8 hours at the treatment facility. Each treatment is followed by a rest period, which allows the maximum cancer killing effects of the chemical agents to wo rk while permitting the bodys blood cell count to return to normal (usually a 21 day pe riod) (Olivotto & Levine 2001). Chemotherapy has severe side effects which vary ac cording to the agents used. Hair loss (over the entire body), nausea, loss of a ppetite, and vomiting are common side effects. According to (Olivotto et al 2001), hair l oss is one of the most upsetting side effects because it is a public symbol that the woma n has cancer (2001:178). Because many chemotherapy drugs reduce white blood cell cou nts, patients undergoing treatment are more susceptible to infections. Addit ional side effects include anemia, abnormal bleeding and bruising, diarrhea and consti pation, joint and muscle aches and pains, loss of muscle strength, and sore mouth (muc ositis). Chemotherapy also disrupts menstruation. It may bring early and abrupt menopau se in women due to the effects it has on the ovaries, which will impact fertility (Lo ve & Lindsey 2000). Sexual side effects include: decreased libido due to stress, hormones, self-confidence, and body image; vaginal dryness; and infections. There are also cog nitive side effects such as temporary memory loss and depression.
52 Hormone therapies are generally easier to take and have fewer side effects (Cancer. 1996). Hormone blocking drugs interfere wi th hormones that support cancer cell growth and are usually started right after sur gery and are continued for months or years. These treatments are designed to reduce the level of female hormones (e.g., estrogen and progesterone) in the body and can incl ude the use of drugs (e.g., tamoxifen) and/or removal of the ovaries (through s urgery or radiation). The side effects of hormone therapy depend on the drug, dose and tre atment duration. They may include hot flashes, vaginal discharge, weight gain, facial hair, headaches, fatigue, and hypercalcemia (increased calcium levels in the bloo d) (Love & Lindsey 2000). Complementary and alternative therapies are also u sed to complement regular treatments. These include diet, vitamins, herbs/tea s, meditation and visualization, spiritual healing, prayer, acupuncture, homeopathy, and bioelectromagnetics. There is agreement as to what constitutes optimal breast can cer treatment and follow-up care. The two areas where consensus is greatest are, 1) t he use of radiation therapy following breast conserving surgery or a total mastectomy for early stage cancer (Li et al 2002; 2003b) and 2) the use of adjuvant chemotherapy for lymph node positive breast cancer (AmericanCancerSociety 2003). Breast cancer trends: An epidemiologic overview Breast cancer incidence and mortality vary widely among women of different racial/ethnic backgrounds (Moore 1999) and are medi ated by individual experience of health and illness, gender, class, culture and soci oeconomic status. In the next few sections, Hispanic/Latina breast cancer incidence, mortality, survival rates and cancerrelated behaviors will be compared with those of no n-Hispanic Americans (Figure 2.3). Overall, Hispanics have lower cancer incidence and mortality from the four major cancers, including breast cancer; however, they hav e higher incidence and mortality
53 from cancers in which infectious agents play a sign ificant etiologic role (e.g., cervical cancer) (American Cancer Society 2007; Huerta 2003b ). Incidence and mortality rates from breast cancer a re generally lower among Hispanic women compared to white and African Americ an women (See Figure 2.3). The average annual age-adjusted incidence rates from 20 00-2004 were 132.5/100,000 among white women, 118.3/100,000 among African Amer icans, 89/100,000 among Asian/Pacific Islanders, 89.3/100,000 among Hispani cs, and 69.8/100,000 in Native American/Alaska Natives (American Cancer Society 20 07). Figure 2.3. Breast Cancer Incidence and Mortality Female Breast Cancer Incidence and Mortality Rates by Race and Ethnicity, US, 2000-2004132.5 118.3 8989.3 69.8 25 33.8 12.6 16.1 13.90 20 40 60 80 100 120 140White African American Asian American/ Pacific Islander Hispanic/Latina American Indian/ Alaska Native Rate per 100,000 Incidence Mortality Source: Adapted from American Cancer Society Breast Cancer Facts and Figures 20072008. There has been a steady increase in the incidence of breast cancer in the United States since the 1940s (Wingo et al 1998) due to c hanges in womens lifestyles (e.g., nutrition) and reproductive patterns (e.g., menstru ation at an early age, having fewer children and at a later age). The changes in reprod uctive patterns increase the exposure
54 of the breast to estrogens that are associated with cancer (American Cancer Society 2007). In addition, advances in early detection and the use of mammography have also influenced the increased number of new cases diagno sed since the 1980s. From 1975 to 2000, the greatest increase in invasive cancers was seen in women 50 years of age and older. For the same period, the incidence in du ctal carcinoma in situ breast cancers increased five times faster than the rates for inva sive cancers. This increase is a direct result of mammographys ability to detect cancer at an early stage of development (ibid). Breast cancer is the leading cause of cancer death s in Hispanic women compared to white non-Hispanic women for whom lung cancer is the most common (O'Brien et al 2003). According to the American Can cer society, breast cancer death rates have declined in recent years. The biggest de crease occurred in women below the age of 50 (3.7% per year from 1991-2000). For women 50 years of age and older, the decrease was more subtle (2.0% per year from 1991-2 000) (AmericanCancerSociety 2003). The decrease in breast cancer death rates ca n be attributed to advancements in treatment and early detection. However, African Ame rican women and women from other ethnic groups have benefited less from the de crease in breast cancer. Among Hispanic women, breast cancer mortality rates dropp ed 1.8% from 1992 to 1999, a smaller decrease than the one seen in white non-His panic women 2.6% (O'Brien et al 2003). Among African American and Asian and Pacific Islanders, death rates dropped 1.1% per year from 1992-2000 (AmericanCancerSociety 2003). Survival is the best indicator for progress in can cer treatment (Pecorelli et al 2003). Increases in breast cancer survival are the result of earlier diagnoses through increased screening, more effective treatment, prev ention of cancer recurrence and of secondary diseases, and decrease in mortality form other causes (MMWR June 25, 2004). Survival after breast cancer recurrence has also improved, suggesting that new
55 therapies are helping women with recurrent cancer l ive longer; however, rates have improved more slowly for non-white populations (Gio rdano 2003). It is important to note that higher survival rates do not necessarily resul t in lower mortality rates, living longer with cancer might reflect an earlier diagnosis rath er than an improved outcome (Li et al 2003b; MMWR June 25, 2004). The relative survival rates for women diagnosed wi th breast cancer are: 87% at five years after diagnosis, 77% after 10 years, 63% after 15 years, and 52% after 20 years (AmericanCancerSociety 2003). However, it is lower for women diagnosed at younger ages, perhaps due to having more aggressive cancers and poorer response to hormonal treatments (Boyapati et al 2004; Boyer-Cha mmard et al 1999; Love & Lindsey 2000). Differences in survival patterns exist between rac ial/ethnic groups (BoyerChammard et al 1999; Haynes 1999; Joslyn 2002). Afr ican American, Hispanic, and American Indian women are more likely to be diagnos ed with advanced-stage breast cancer and to have poorer outcomes after diagnosis compared to non-Hispanic whites (Li et al 2003b). Several studies have reported low er survival rates for Hispanics and African Americans/ Blacks compared to non-Hispanic whites (Joslyn 2002; O'Malley et al 2003a; O'Malley et al 2003b).. Breast cancer risk and factors associated with poor er survival Breast cancer is a complex, multifactorial disease where there is a strong interplay among genetic/biological, environmental a nd lifestyle factors (Gerber et al 2003; Martin & Weber 2000). In recent years, the la rgest increases in breast cancer have been seen among women with the lowest risk, wh ich has lead researchers to investigate changes in reproductive patterns, lifes tyle and nutrition (Bernstein 2002).
56 In addition to being female, age is the strongest risk factor for developing breast cancer (NationalCancerInstitute 2003). For example, women who are 50 years of age have double the risk of developing breast cancer th an women who are 40, and the risk doubles again at age 70 (Olivotto et al 2001). Gene tics and certain hormone levels (e.g., estrogens) are also strong risk factors. A previous diagnosis of breast cancer, a family history of breast cancer (a first degree relative, e.g., mother, sister and/or daughter) and being a carrier of the BRCA1 and 2 gene (American C ancer Society 2007; Love & Lindsey 2000; Martin & Weber 2000) are also strong risk factors. Moderate risk factors include later pregnancy (after age 30), previous no n-cancerous breast disease, and post-menopausal obesity. Weak risk factors include hormone replacement therapy, menstruation before 12 years of age, diet (e.g., mo re than 1 alcoholic drink a day and high fat intake), and body weight (e.g., obesity) a s well as environmental factors such as radiation exposure (Kelsey et al 1993; Olivotto & L evine 2001). Significant differences in have been reported acro ss racial/ethnic groups at diagnosis, stage at diagnosis, histology and treatm ent (Boyer-Chammard et al 1999; Hausauer et al 2007), which may contribute to the s urvival disparities that exist between whites and other ethnic groups (American Cancer Soc iety 2007; Joslyn 2002). Advanced-stage cancer diagnosis (Stage III or IV) is one of the key factors associated with lower breast cancer survival and mo rtality rates (Boyer-Chammard et al 1999; Ghafoor et al 2003; Hausauer et al 2007). Mul tiple factors, ranging from biologic (at the cellular and molecular level), sociocultura l and behavioral (beliefs, screening practices), to structural (access to care and socio economic status), are associated with later-stage diagnosis in multicultural populations (Hunter 2000). Women diagnosed with cancer from low-income backgrounds are more likely to be diagnosed at a later stage of the disease and are more likely to have lower 5-yea r survival rates than are women of
57 higher socioeconomic status (Baquet & Commiskey 200 0; Miller et al 2002; O'Malley et al 2003b). Several studies have explored factors related to l ate-stage diagnosis in multicultural populations. Lannin, Mathews, Mitchel l, Swanson, Swanson, and Edwards (1998) examined the influence of cultural factors a nd socioeconomic status in racial differences in breast cancer stage at diagnosis in a matched case control study (Lannin et al 1998). They found that lacking transportation having no private health insurance, being Black/African American, having lower income, and never having been married were 2.0-3.7 times more likely to be predictive of late-stage diagnosis. Certain cultural and psychological factors were also found to be pre dictive of late stage diagnosis; these include perceptions that the air causes cancer to s pread, the devil causes cancer, that having breast surgery makes women less attractive, and that chiropractics are an effective treatment for breast cancer. Women with t hese perceptions were 1.9-2.8 times more likely to be diagnosed with advanced cancer. C ombined socioeconomic and cultural belief factors largely accounted for the e ffects of race on late-stage diagnosis, illustrating that socioeconomic factors alone do no t account for all differences in stage at diagnosis. Access to medical care is an important factor con tributing to stage and survival differences among multicultural populations (Hunter 2000). Lack of health insurance is associated with lower survival rates and less acces s to optimal breast cancer treatment (Baquet & Commiskey 2000; Haynes 1999; Richardson 2 004a; Richardson 2004b). Women at risk for being undertreated include women from lower socioeconomic backgrounds and women without health insurance or t hose insured by Medicaid (Richardson 2004b). According to Bickell and Chassi n (2000), women with no insurance or with Medicaid insurance were at higher risk of n ot receiving radiation therapy after
58 breast conserving surgery or not receiving adjuvant chemotherapy and were less likely to receive these treatments than were women with pr ivate insurance (Bickell et al 2000). In addition to health insurance, having a usual pro vider of care increases access to cancer treatment (Breen et al 1999). Studies have shown that younger women diagnosed wi th breast cancer tend to have poorer prognosis than older women regardless o f race/ethnicity (Boyer-Chammard et al. 1999). Hispanics and African Americans appea r to be diagnosed at a younger age than white women are (Bentley et al 1998; Wojcik et al 2003; Zaloznik 1997). The presence of the cancer at an earlier age would indi cate that it is a more aggressive form of cancer (Hunter 2000). Similarly, Boyer-Chammard et al (1999) found that nonHispanic whites were diagnosed with breast cancer a t a significantly older age than were the other racial/ethnic groups in their study. The median age at diagnosis for nonHispanic white women was 64 years of age, compared to 55 years of age in Hispanic, 52 years in African American/ Black and 50 years in Asian women. In the study, more Hispanics and African American/ Blacks than non-His panic whites were diagnosed under the age of 50. The researchers state that thi s can be explained by differences in the age distribution of selected racial/ethnic popu lations. There are smaller proportions of African American and Hispanic populations older than 70 years of age and they have a younger median age. Also, older African American and Hispanic women may be less likely than younger African Americans and Hispanics who are at higher risk, to seek medical care (Boyer-Chammard et al 1999). According to Hunter 2000, a number of studies sugg est that certain tumors may have a more aggressive phenotype and show changes i n the distribution of tumor markers in some population subgroups (Hunter 2000). Differences in tumor marker expressions could explain some of the differences, as African American and Hispanic
59 women are more likely to have tumors that are hormo ne receptor negative as well as other biologic characteristics that are known to ha ve a poorer prognosis (Elledge et al 1994). Some researchers suggest that cancer tumors in African American/Black women are known to be more aggressive and have certain tu mor characteristics that have less favorable outcomes (Trock 1996). Chen, Correa, Kur man, Wu, Eley, Austin et al. (1994) conducted a hospital-based study to evaluate tumor characteristics in African American and white women diagnosed with breast cancer(Chen e t al 1994). They report that African Americans were more likely to have a poorly differentiated tumor, high grade nuclear atypia, tumors that are estrogen receptor n egative, and other biomarker characteristics associated with a poorer prognosis when adjusting for tumor stage, age, geographic location, BMI, SES, reproductive factors and health care access. There is evidence that treatment choices may vary by race and ethnicity (Li et al 2003b). A study conducted by Lazovich, Solomon et a l. (1999) found that non-white women were less likely to receive breast-conserving therapy (Lazovich et al 1999). Survival differences seen between African American and Hispanic may reflect differences in breast cancer treatment. Boyer-Chamm ard (1999) reported that African American and Hispanic women received more adjuvant chemotherapy than did whites in their study and suggest this maybe due to African A merican and Hispanics having more advanced disease and needing more aggressive treatm ent (Boyer-Chammard et al 1999). They also found that hormonal therapy was p rescribed less for African Americans and Hispanics than it was for non-Hispani c whites. This may be due to a higher percentage of African American and Hispanic women having estrogen-receptornegative (meaning they may not respond to hormonal therapy) breast cancers compared to non-Hispanic whites (Gapstur et al 1996). Anothe r population-based study, examined racial differences in the treatment of women with e arly-stage breast cancer. The results
60 indicate that African American women in the study w ho received breast-conserving therapy were significantly less likely to receive f ollow-up radiation therapy. Regardless of whether the treatment they received was optimal or sub-optimal, African American women had lower survival rates; however, when both groups received optimal treatments, differences in survival were significan tly less (Joslyn 2002). According to Li, Malone and Daling (2003), African American, America n Indian and Hispanic women were more likely to have breast cancer surgery not recommended or to refuse surgery, and were also less likely to be treated with radiat ion than whites. Among women with early-stage breast cancer, African Americans, Asian and Pacific Islanders, Mexicans, and Puerto Ricans were 20% to 50% more likely to re ceive inappropriate treatment (Li et al 2002; 2003b). Summary and gaps in the epidemiologic data Overall, Hispanic/Latina women tend to have a more favorable epidemiological outlook. They have lower breast cancer mortality an d incidence rates than do white or African American/black women. However, while mortal ity rates have decreased for EuroAmerican women, they have increased for Hispanic/La tina women. Hispanic/Latina women, life African American/black women, also tend to be diagnosed with a breast cancer at a lmore advanced stage, making it more di fficult to treat successfully. These differences often reflect socioeconomic differences between groups (Glanz et al 2003) as well as unequal access to quality care (American CancerSociety 2003), patient/physician interactions or knowledge (Li et al 2003b). According to KagawaSinger, the overwhelming importance of socioeconom ic factors in explaining racial/ethnic differences in incidence and mortalit y rates for cancer go beyond variables of personal risk factors or medical care services, and suggest the influence of a broad range of other factors associated with poverty. The se include differential exposure to
61 crowding, inadequate education, unemployment or und eremployment, substandard housing, chronic malnutrition, higher smoking rates psychosocial stress and noxious environmental agents. (Kagawa-Singer 1995a: 111) Some of the gaps and issues related to the availab le epidemiological data on breast cancer among Hispanics relate to the followi ng. First, many studies reporting incidence data rely on Surveillance Epidemiology an d End Results (SEER) data. Interestingly, SEER only collects information from 11 states and Florida, one of the states with the highest number of Hispanics/Latinos is not one of them. So, much of the incidence data reported nationally may not be gener alizable to Hispanics in Florida, which I would argue considerably vary in country of origin and other variables (historical, economic, immigration status etc) from Hispanics in California and New Mexico (two of the states included in the SEER registry). Compared to New Mexico and California, Florida has a much larger proportion of Hispanics/L atinos who are foreign born, including those born in Puerto Rico. For example, f oreign born Latinos, including persons born in Puerto Rico make up 12% of the Lati no/Hispanic population in New Mexico and 33% of the Hispanic/Latino population in California. In contrast, foreign born Latinos/Hispanics, including persons born in Puerto Rico make up 64% of the Latino/Hispanic population in Florida. In addition, New Mexico and California have a much higher proportion of Mexicans, 45% and 78% res pectively, compared to Florida where just 13% of the Latino/Hispanic population is Mexican. Puerto Ricans make up 18% of the Latino/Hispanic population in Florida co mpared to 1% of the Latino/Hispanic population both in New Mexico and California. While Cubans make up 32% of the Latino/Hispanic population in Florida and 1% of the Hispanic/Latino population in California and 0% in New Mexico. Second, there are no standard requirements for reporting race and ethnicity information in cancer registries across states. Though there
62 has been a general move towards consensus, to date, at least in the state of Florida, there are no standard data collection requirements for race and ethnicity. Each hospital reporting a cancer diagnosis to the state registry has its own race/ethnicity classification system; this could lead to an under representation of the number of cancer cases among Hispanics. Also, less than 50% of the Hispanic case s reported provide information on nationality or country of origin, making it nearly impossible to disaggregate (e.g., Cuban, Mexican, Puerto Rican etc ) cancer incidence and pr evalence/survival data from state cancer registries. The case is different for mortal ity statistics, where nationality/country of origin is recorded, for the most part, on all death certificates and this information is available from the National Center for Health Stati stics. This brings us to the third gap/issue, which is that most of the data that are available, both at the state level and nationally, report cancer statistics for all Hispan ics as an aggregate group (O'Brien et al 2003), which masks any potential differences in can cer mortality among the diverse groups that fall under the Hispanic label. For exam ple, Martinez-Tyson, et al (2008) provide a population-based overview of cancer morta lity among Hispanics in Florida that explored cancer mortality rate differentials betwee n Cubans, Mexicans, Puerto Ricans and all other Hispanics. The authors report cancer death rates of the Hispanic subgroups compared favorably with those of white no n-Hispanics and that cancer rates often presented for all Hispanics mask important di fferences between the different ethnic subgroups that fall under the Hispanic umbrella (Ma rtinez-Tyson et al 2008). In addition to an epidemiologic overview of breast cancer, this section provides information on the actual disease of breast cancer, its diagnosis and treatment, as well as factors contributing to survival. Perhaps it is more information than needed, but this information is important in order to understand the breadth and impact of what the diagnosis of breast cancer entails (emotionally, ph ysically and mentally) and the many
63 factors that may contribute to the differences seen between Hispanic women and women from other ethnic groups. In summary, this chapter provides a review of the literature related to the medical anthropology, social support and breast cancer. The guiding theoretical frameworks of critical biocultural anthropology as well as the st ress buffering model of social support were discussed. The following chapter details the r esearch methodology, which includes recruitment of study participants, the research des ign, sampling strategy, data collection and analysis.
64 Chapter 3: Methodology Introduction This chapter outlines the research methods employed in the current study, analysis and interpretation of research findings. T he chapter begins with a description of recruitment of study participants and the inclusion criteria for participation. This is followed by the research design and methodology. Th e ethnographic approaches used allowed me to assess the socio-cultural factors tha t may mediate social support among immigrant Latina breast cancer survivors in a conte xtually based manner, that provides a rich and in-depth understanding of social support. Recruitment of study participants Latinas immigrants diagnosed with breast cancer we re recruited from the community, local support groups and grass roots org anizations that serve this population. Thus, it was a community-based sample. I regularly attended and participated in local activities and got to learn a bout the women and they in turn got to learn about me. When I had the opportunity I shared my research idea with the Latina immigrant breast cancer survivors I met. The Latina immigrant breast cancer survivors recruited for this study where also asked if they k new other breast cancer survivors who might be interested in participating in this projec t. I gave everyone a little card with my cell phone number and told the women they could cal l me anytime (e.g., evening or weekend). The importance of this simple gesture was made clear to me during my first interview, in which the participant said that she f ollowed-up with me because I gave her my personal contact information not some flyer with an office phone number to call. This underscores the importance of building relationship s when doing research in the
65 community, especially when working with vulnerable populations such as possibly undocumented or non English speakers. Establishing trust and building relationship is crucial in community-based research. Key informants included support group leaders, nur ses, educators, and advocates who worked locally with Latinas who had b een diagnosed with cancer. Key informants also assisted with recruitment of study participants. Inclusion criteria The criteria for participant inclusion in the in-d epth and structured interview were that the women: a) self-identified as Hispanic/Lati na, b) had been diagnosed with breast cancer within the last five years, c) were 18 years of age and older and d) had been born outside the mainland United States (i.e., Latin Ame rican immigrant women). The reason for selecting a five year range from diagnosis is b ecause a woman is considered cancer free after five years with out a recurrence (Love & Lindsey 2000). Also, the first five years after diagnosis are some of the most psycholo gically and physically challenging because of the diagnosis it self, the treatments an d follow-up care. It has been suggested that this is a particularly stressful tim e and a crucial adaptation period (Zebrack 2000b), thus a period where social support would be needed the most. Research design An ethnographic approach that combined both qualit ative and quantitative data collection/analysis methods (Bernard 2002) was used Interviews were situated contextually into a background of several years pa rticipant observation of various aspects of the Latino community in Tampa, FL, and m ore recently participant observation of breast cancer awareness activities a nd work with LUNA, Inc. a Hispanic cancer support group. In phase I, I conducted key i nformant interviews with individuals who provided cancer care and/or supportive services to Latina cancer survivors and in-
66 depth interviews with immigrant Latina breast cance r survivors (See Figure 3.1 for an overview). The first phase laid the ground work for the secon d, so that data from the health/support providers, in-depth interviews and f ree lists informed the development of the structured questionnaire that was administered in Phase II. Within the ethnographic context of this study, combining qualitative and qu antitative methods helped address the complexity of domains such as social support in a w ay that quantitative instruments alone could not, thus integrating epidemiological a nd anthropological approaches. Figure 3.1. Overview Diagram Ethnography is a process based on direct observatio n in which data are typically gathered and interpreted qualitatively in an attemp t to construct a holistic description of a culture or socio-cultural phenomena (Janes 1984). T he methods used included participant observation, in-depth interviews and fr ee lististing, key informant interviews
67 and structured interviews. After each data collecti on phase, data was analyzed to identify patterns, themes and inconsistencies among the data, thus the analysis was iterative (Bernard 2002). Furthermore, the combinat ion of methods allows for data triangulation and provides a richer understanding o f the cultural and social context of social support further improving the internal valid ity of the findings. All participants were informed about the nature of the study that their p articipation was voluntary and that information will be kept confidential. Participant observation Participant observation is one of anthropologys mo st important research tools. It involves the presence and participation of the rese archer in the social life of the people and in the study setting (Hahn 1999). Participant o bservation enables the researcher to become immersed in the community and build rapport, and trust, enabled a deeper understanding of the breast cancer experience and w hat it meant to have breast cancer if you did not have family in Florida, did not have insurance or speak English. I attended birthday parties, celebrations, made hospital visit s, attended funerals and participated in cancer walks/races. My involvement with local cance r organizations gave me the opportunity to 1) establish rapport with leaders in Latino communities, local cancer organizations, physicians, and Latina support group s; 2) take part in community and cancer-related activities; and 3) gain entry into t his community. As a participant observer I continued to participate in such activities. I to ok field notes on interactions, observations, and informal conversations and specif ically focused on the topics/issues discussed by the women, their friends, family and other activity participants. During the interviews notes on non-verbal cues, voice tone, bo dy language and other nuances were recorded. Participant observation helped contextual ize and improved the validity of the
68 research findings and helped determine additional q uestions to ask in the open-ended and structured interviews. Key Informant interviews (N=5) Sampling techniques: Key informant interviews Nonprobability sampling techniques (Bernard 2002) such as purposive and snowball sampling were used to recruit support serv ice providers. Key informants were selected based on their: 1) experience working with Latina cancer patients, 2) knowledge of Hispanic culture, and 3) intimate know ledge of cancer patient needs. Data collection: Key informant interviews Interviews were conducted with a breast cancer sup port group leader, an oncology nurse, a community cancer survivor advocat e and two social workers from local organizations and hospitals/clinics that work with Latina cancer survivors. The initial interviews were conducted face to face April 2007 t hrough May 2007. The interviews were done at the participants office or home. Key informants were consulted over the course of the project and were contacted via phone and email as needed. Key informants served as guides and assisted with recru itment. They also provided feedback and reviewed the structured questionnaire administe red in Phase II and were consulted through out the project. The five key informants in terviewed were native Spanish speakers and fluent in both English and Spanish. An interview guide that included openended questions regarding the social support servic es available to and used by Latinas as well as community resources and/or gaps in suppo rtive services/programs and the support needs of Latinas diagnosed with breast canc er was developed. The data collected was used to complete/verify field notes a nd to inform the questions for the structured interviews and the in-depth interviews. The key informant interviews also provided another point of view that further context ualized the experience of Latina
69 immigrants diagnosed with breast cancer. See Append ix A for the key informant interview guide. Data analysis: Key informant interviews Data from the primary interview were analyzed them atically. A code book based on the interview guide and research questions was c reated. The data were sorted, organized and coded iteratively by hand and respons e frequencies were calculated. Field notes taken during conversations with key inf ormants were also reviewed and coded. In-depth interviews and free lists (N=28) Sampling techniques: In-depth interviews: Nonprobability sampling techniques (Bernard 2002) such as purposive and snowball sampling were used to recruit Latin Americ an immigrant women diagnosed with breast cancer for Phase I of this study. A sam ple size of 20-30 is usually sufficient for most domains (Guest et al 2006). The interviews were conducted with a range of informants in order to capture variation (e.g., ran ge of possible items) and improve external validity (Bernard 1996; Bernard 2002). The sampling procedures used are appropriate due to the exploratory and ethnographic nature of this study and are selected for the following reasons. First, particip ants needed to have a breast cancer diagnosis, thus I could not recruit from the genera l Latina population. Second, immigration is a sensitive topic and therefore a re ferral from a trusted source may reassure the study participant that I am trustworth y. Third, the population parameter of Latinas who have been diagnosed with breast cancer in West Central Florida is relatively small. For example, 1,409 Latina women were diagnos ed with breast cancer in West Central Florida compared to 21,403 white/Caucasian women from 2000-2005 (FCDS 2006). Fourth, the state cancer registry does not c ollect race/ethnicity data from
70 hospitals/oncologists in a standardized fashion, th us making it difficult to recruit participants from the cancer registry and the data reported for the county where the cancer was diagnosed, not guaranteeing that the ind ividual diagnosed actually lives in that county. Data collection: In-depth interviews The face-to-face in-depth interviews and freelists were conducted with 28 Latina cancer survivors. The in-depth interviews were comp leted from April 2007 through October 2007. The interviews ranged from 30 to 150 minutes, with the average interview taking 70 minutes to complete. In-depth interviews were done at the participants home or at another place (e.g., coffee shop) that was co nvenient to the participant. The interviews were digitally audio taped with the part icipants consent. Participants were also asked to complete a brief demographic form. The indepth interview guide included freelists and open-ended questions about immigratio n experience, cancer diagnosis and treatment, and social support. Free lists are often used to identify items in a c ultural domain and to calculate each items relative cultural salience (i.e., promi nence, importance, familiarity, and representativeness) (Bernard 2002; Ryan et al 2000) Free listing is an effective method for defining the contents and boundaries of a cultu ral domain using the language, concepts, and categories that are meaningful to inf ormants (Gravlee 2005; Ryan et al 2000). For coherent domains, samples of 2030 infor mants are generally adequate; additional informants add few new items (Borgatti 1 998). The freelisting exercise was conducted at the beginning of each interview. It wa s used to elicit the types of social support resources that are used and meaningful to L atinas diagnosed with cancer and examine the four types of social support. For examp le, participants were asked to list all
71 the ways a person could show someone who was sick o r recovering from illness (e.g. breast cancer) that they loved or cared about them (emotional support). Participants were also asked to list all the things a person wit h breast cancer needed assistance with (Instrumental support). Items that were listed earl ier or more frequently were assumed to be more salient in a given domain. I used nonspecif ic prompting and read back the list of free listed items to participants to elicit the ite ms as completely as possible (Brewer 2002). The data derived from the in-depth interviews was, in part, used to develop the structured questionnaire administered in Phase II. See Appendix B for the in-depth interview guide. The interview guide was written in Spanish. The open-ended questions allowed unanticipated issues and topics to emerge a nd yielded an emic perspective on the sources, types, and use of social support. Samp le questions included: Thinking back to your childhood, what were some of the things you learned about when people were sick or ill? How do you usually manage hard times or stressful events in your life? Can you tell me in your own words what support mea ns to you? What makes someone supportive? What was it like when you came to this country? Wh o came with you/ who stayed behind? What are the things that caused you the most stres s during the diagnosis and treatment for breast cancer? How did your social relationships change? Did peop le behave differently towards you?
72 Tell me about you breast cancer experience? What h as been helpful since your diagnosis and why was that important to you? W ho or what are the things that have made this process difficult? Who was/is involved with helping you to manage you r breast cancer diagnosis and treatment? Was there any one you wanted to involve but could not? Why? The information collected from the interviews provi ded a rich understanding from an individual perspective (Bernard 2002) and allowe d for greater probing of specific experiences or perspectives. Data collection stoppe d when data saturation was reached (Guest et al 2006). In total, 28 interviews were co mpleted from April 2007 through October 2007. The Interviews were done in person an d conducted in Spanish. However, some of the participants interviewed were bilingual and code switching occurred. Where the interview began in Spanish but intermittently w e would switch to English and then back to Spanish. Data analysis: In-depth interviews I created a code book based on the interview guide and research questions. Then I created a data spread sheet in excel that in cluded both the interview questions and codes. The audio taped data was transcribed in the Spanish into the excel spreadsheet. The data were sorted, organized and co ded iteratively by hand. Coding is the identification of recurrent themes and is used to identify common understandings, terminology and/or context of the topic from the in terviewees point of view (de Alba Garcia et al 2007). Drawing from content analysis t echniques the data were analyzed for: 1) frequency (how often the comment--similar c omments--was mentioned); 2) extensivity (how many participants made the comment or similar comment); and 3) specificity (how clearly focused the comment or sim ilar comments were). Additionally,
73 coding the text in this fashion allowed the qualita tive data to be analyzed statistically (Bernard 1996) such as calculating frequency scores (Jehn & Doucet 1996). Each theme was then assessed in terms of its implications for the study research questions and hypothesis as well as domains to be included in the structured interviews in Phase II. Spanish quotes from the in-depth interviews were tr anslated to English by the researcher. To discern cultural salience and categorization pat terns of domains freelist data were analyzed through univariate analysis of the it ems listed under each category/question. Each items frequency of occurre nce and the order of occurrence were calculated using Anthropac (Borgatti 1996). It ems that occur more often were assumed to be more salient (Bernard 2002; Ryan et a l 2000). Structured interviews (N=60): Sampling techniques: Structured interviews Purposive, snowball and quota sampling techniques w ere also used for the structured interviews in Phase II of this study. Ac cording to Bernard, a sample size of at least 30 is appropriate (Bernard 2002; Fink 2003) a nd is generally robust enough for statistical analysis (Madrigal 2003). Further, Ragi n et al (2003) state that intensive research typically focuses on a small to moderate n umber of cases and examines them in depth (Ragin et al 2003). For the structured int erviews a moderate sample size of 60 will accommodate univariate and bivariate statistic al analysis and still allow the researcher to establish a measure of empirical inti macy (Green 2001). Strategies suggested by Werner and Bernard (1994) were used to guide the quota sampling strategies I developed a variable matrix with the d emographic parameters and variables of interest, then l developed a contact tree/partic ipant record table that provided an overview of the population sampled.
74 Data collection: Structured interviews The questions for the structured interviews were de rived from the literature, review of existing questionnaires and Phase I findi ngs. When developing a questionnaire, it is necessary that researchers ask questions that are conceptually relevant and reflective of the issues that are impo rtant (Roche et al 1998). Bilingual/bicultural terms and phrases also need to be taken into consideration according to peoples daily lives and everyday vocabulary (We idmer et al 1999). Data derived from qualitative methods are very useful for developing questions for interviews schedules and questionnaires by identifying appropriate quest ions, proper question wording and content domains as well as to help reveal the range of variation in response alternatives (Bernard 2002). Thus, I incorporated findings from the in-depth interviews and Freelists from Phase I as items in the structured questionnai re that was administered in Phase II. The structured questionnaire included the following domains: demographics, chronic stress, immigration experience, social support, pro vider communication, and cancer experience. See Appendix C for the Structured Quest ionnaire. Because the structured questionnaire is designed to explore multiple domai ns of the participants experience testing for psychometric properties of the entire q uestionnaire would not be appropriate (Wellisch et al 1999). Demographics: These questions covered participant characteristic s such as age, education, household income, insurance status, empl oyment, English proficiency, chronic stress and marital status. An English prof iciency index that included measures of each respondents perceived ability to understan d, speak, read and write English (N=60). This index is considered to be a reliable m easure with a Cronbachs Alpha of .945.
75 Chronic stress: Chronic stress was used to assess the influence of structural factors that might influence social support (Gottli eb 1997). Chronic stressors are difficulties, problems, and challenges that people may experience in their daily life over a period of time, for instance unemployment, poverty, neighborhood, and work (Israel et al 2002; Schulz et al 2001)Data from the in-depth inte rviews were used to create twelve items to assess chronic stress.. Reliability tests showed that only seven of these items could be effectively grouped together to form a chr onic stress scale (See Appendix D for the list of items). A sample size of 23 respondents for whom all seven items were applicable were used to calculate an acceptable Cro nbachs Alpha of .748. Immigration experience: The questions on migration/immigration experience were adapted from Janes Social Support and Migrati on questionnaire (Janes 1990) and from the literature (Marikovic 2002) as well as Pha se I findings. Likewise some items such as length of time in U.S., country of origin e tc. and frequency of communication with family in native country were also included. Social support: A social support scale was created by the research er. The items included in this scale were created from free list results collected in Phase I, data from the in-depth interviews, key informant interviews a nd participant observation. I also drew from items in the social support literature (Holroy d et al 2001; Katapodi et al 2002; Landale & Oropesa 2001; Markovic et al 2002; Matsud aira 2003; Meana et al 2001; Neufeld et al 2002; Simich et al 2003). The existin g social support scales that were reviewed (e.g., MOS Social Support Survey) served a s a guide (Sherbourne & Stewart 1991). The social support scale created for this study in cluded 21 dichotomously scored (yes = 1/no = 0) items (eight assessed emotional su pport; eight assessed instrumental/tangible support; and four assessed in formational support). It is referred to
76 in the analysis as overall social support. Since th e social support scale was composed of dichotomously scored items the Kuder-Richardson for mula number 20 (KR20) was used to assess the scales reliability (Carmines & Zeller 1979). Reliability tests calculated through SPSS showed that all 21 items could be effe ctively grouped together to form a social support scale (See Appendix D for the list o f items). A sample size of 18 respondents for whom all 21 items were applicable w ere used to calculate an acceptable KR20 alpha of .854. Some participants stated that s ome of the items were not applicable to them (e.g., help with childcare if they did not have children) thus they did not answer yes or no for that given item. Their responses for the items that were not applicable were recorded as missing. The overall social suppor t score for each participant was calculated by adding up the yes responses and the n dividing that by the total number of responses. Since some of my hypotheses specificall y related to emotional support, I used the eight items used to assess emotional suppo rt to create an 8 item emotional support scale Reliability test showed that all eigh t items could be grouped together to form an emotional support scale that has a sample s ize of 58 respondents for whom all eight items were applicable were used to calculate an acceptable KR20 alpha of .796. Provider communication : A five item scale to assess patient/provider communication was created as another way of gauging informational support as the literature states that support from health professi onals (physician, surgeon, nurse, etc.) is important to individuals diagnosed with cancer ( Gray et al 2000), and that information provided by doctors is vital to understanding ones treatment and survivorship trajectory (Gray et al 2000; Neuling & Winefield 1988; Thewes et al 2004). Reliability test showed that four items could be grouped together to form a n provider communication scale that has a sample size of 60 respondents for whom the fo ur items were applicable was used
77 to calculate an acceptable Cronbachs Alpha of .880 (See Appendix D for the list of items). Cancer experience: Questions on breast cancer diagnosis, treatment, f ollow-up care, support program participation, and health car e system navigation were adapted from existing questionnaires and informed by the fi ndings from Phase I. Questions about cancers impact on their role as women and on disea se-related stress/problems were created from data derived from the in-depth intervi ews. The questionnaire was developed iteratively in both Spanish and English as the researcher is bilingual and fluent in both language s. The questions that were derived from the literature and were originally written in English were translated by the researcher into Spanish. The questions that were in formed by the Phase I findings were created in Spanish. Once a solid draft of the quest ionnaire was developed, both a copy in English and Spanish was created. Back translatio n techniques were not used. However, to make sure that the Spanish questions, c oncepts and terms used were meaningful, understandable and grammatically correc t the questionnaire was sent to the bilingual key informants for their review. They mad e a few suggestions which were incorporated into the final draft. Once a solid dra ft of the questionnaire was constructed, but before the questionnaire was administered, it w as pilot tested among five women from various nationalities for clarity, ease of und erstanding and administration, and acceptability (Vazquez-Montilla 2000). Regional dif ferences in the use of Spanish idiomatic expressions and different words were cons idered. For example, mamas, senos, pechos are all Spanish words for breast. Minor revisions and modifications were made as necessary. Thus, certain words and terms we re changed to make the questionnaire more relevant and meaningful.
78 Administering the structured questionnaire Bernard states that phone interviews are not intimi dating, like self administered surveys, but allow interviewers to probe or to answ er questions (Bernard 2002). While phone interviews have the impersonal quality of sel f administered questionnaires they were used because they also have the personal quali ty of face to face interviews. The structured questionnaire was administered over the phone March-July 2008. On average, the interviews took 45 minutes, ranging fr om 30 minutes to 90 minutes. Participants were recruited as described in the Rec ruitment of Study Participants section in Chapter 3 Setting. The majority of the interview s (N=58) were done in Spanish. The interviews were done at a time that was convenient to the participant, typically evening or weekend. Each participant was read the informed consent verbal script. If they were agreeable each question was read over the phone and their answers were manually recorded by the interviewer. Women were given an op portunity to share their thoughts and given time to elaborate. To promote efficiency and reduce error associated with data entry the structured questionnaires were created as scannable forms. The hard-copy completed questionnaires were then read by an optic al scanner using Teleform (Verity Software), a high-accuracy content capture system f or automatically processing paperbased forms. This is a more efficient way to enter data and is compatible with field research (Weller & Baer 2001). The data was compile d into one Excel database suitable for exporting into SPSS, a statistical software pac kage. Data analysis: Structured questionnaire The data from the structured interviews were coded, tabulated and input into SPSS (SPSS 1999) for analysis. Descriptive statisti cs were performed to understand the data and to determine a representation of the respo nses obtained. Nonprobability sampling techniques used in Phase II require nonpar ametric statistical tests because
79 samples are not randomly selected from the larger p opulation. Nonparametric bivariate statistical analysis explored relationships among r espondents. This sample of 60 is sufficient for this level of analysis (Bernard 2002 ; Fink 2003). These analyses were performed to examine the independent variables: cul tural beliefs, English proficiency, socioeconomic status, chronic stress and disease-re lated stressors, and length of time in the US in relation social support and to determine if a relationship exists among these variables (Bernard 2002; Kuzma 1998). The following nonparametric tests were used to ana lyze the quantitative data. The Mann Whitney Test was used to compare two indep endent samples. Spearmans rho was used to determine if there was an associati on between two variables. Chisquare was used to see if there was a significant d ifference between the effect of two categorical independent variables and an independen t categorical variable. Kruskal Wallis was used to compare three or more groups. Sp ecifically, descriptive statistics were used to compare support provided by men and wo men (H1). Mann Whitney Test was used to compare overall social support of those who agreed with the statement 1) women should not burden family and friends with per sonal concerns, and the statement 2) the needs of the family should come before your own to those who did not agree with these statements (H1a). Spearmans rho was used to see of there was an association between having to keep a strong happy face and over all social support (H1a). Mann Whitney Test was used to compare overall social sup port of those who agreed with the statement: 1) we have to accept suffering and the s tatement 2) we have to resign ourselves to what life brings to those who did not agree with these statements (H1c). Spearmans rho was used to explore the relationship between English proficiency and overall social support (H2). Spearmans rho was use d to determine if there was an association between English proficiency and provide r communication (informational
80 support) (H2a). Chi-square tests were used to see if there was a significant difference in social support among participants with low, moderat e or high English proficiency and informational support (H2a). Spearmans rho was use d to see if there was a relationship between chronic stress and overall social support ( H3). Spearmans rho was used to explore the association between length of time in t he US and overall social support (H4). Descriptive statistics were used to compare emotion al support from someone in participants native country vs. someone in the US by length of time in the US (H4a). Chi-square tests were used to see if there was a si gnificant difference in informational support among participants who had been in the US 1 0 years or less to those who had been in the US over 10 years (H4b). To conduct some of the analysis and allow for compa risons between groups, I recoded some continuous variables into categorical variables. For example, each participant received an English proficiency score r anging from 0 to 2. For some of the analysis I create a new English proficiency variabl e that included: low (0-.75), moderate (.75-1.75) and high English proficiency (2). I also created a new dichotomous variable for years in the US that included those that have been in the US 10 years or less and those that had been in the US over 10 years (Abraido-Lanz a et al 2005). For some of the analysis that explored differences by ethnicity, I only used the ethnic groups that had five or more respondents. A dichotomous variable was als o created for age that included women younger than 50 and women 50 and older. For s ome of the analysis income was converted to a dichotomous variable that included t hose that had a household income of $10,000 or less to those that had a household incom e of $10,000 or more. Similarly, I created a variable that included women who were mar ried and not married. Items that were reported as not applicable were recoded as mis sing data.
81 Informed consent and Institutional Review Board This study was approved by the USF Institutional R eview Board (IRB) (See Appendix E) and informed consent was obtained from all participants following USF IRB guidelines. The researcher explained the purpose of the study to each participant and informed consent was obtained. Participants were to ld their participation was voluntary. While there are no direct benefits to the participa nt who participated in this study, researchers have reported that survivors participat ing in qualitative research found therapeutic value and expressed appreciation as a r esult of doing so (Ferrell et al 1997; Zebrack 2000a). There were no known risks for parti cipating in this study; however, participants may have experienced discomfort with a nswering questions. In an attempt to avoid this, the researcher assured the participa nt that they could stop at any time for a break if she wished. This research was unfunded an d thus participants did not receive and incentive/honorarium for their participation. H owever, participants who participated in the face to face in-depth interviews received a thank you card and small gift (e.g., small ceramic vase or picture frame) as a token of appreciation. In summary, this chapter detailed the methodology used in this study. The previous paragraphs illustrate how qualitative and quantitative data collection techniques can be used to contextualize social support. The fo llowing chapter describes the results and begins with a description of the research setti ng and places the researcher and study within the context of doing local applied med ical anthropology in West Central Florida. The second section of this chapter present s data from the key informant and indepth interviews. The data describe the sociocultur al context of breast cancer and social support. This section is followed by the data from the structured interviews that identify the cultural and structural factors that influence social support among Latina immigrant cancer survivors.
82 Chapter 4: Results Introduction This chapter situates the researcher within the st udy context and presents the research setting and study findings. For ease of un derstanding findings have been divided into three sections. Section 1 describes t he research setting and places the researcher in context. This section also includes a discussion of the research experience and the multiple roles the researcher had to negoti ate. Section 2 illustrates results from the key informant and in-depth interviews conducted in Phase I. Cultural beliefs, values and expectations about what constitutes social supp ort are discussed. Qualitative data reveal some of the culturally mediated beliefs and expectations that influence social support. Participants lived experience as Latina i mmigrant women diagnosed with breast cancer also shape their worldview and provid e an intimate look at Latina cancer survivorship. Findings from Phase I informed the th e development of the structured questionnaire administered in Phase II. Results fro m the structured questionnaire are presented in Section 3 of this chapter. Findings fr om the structured questionnaire identify the cultural and structural factors that influence social support. Section 1: Research setting Fieldwork took place in West Central Florida (WCF), primarily in the Tampa Bay and Orlando area. For this study West Central Flori da, is defined as the following Hillsborough, Manatee, Orange, Osceola, Pasco, Pine llas, and Polk. This area of Florida is also known as the I-4 corridor, as Interstate 4 is a major thorough fare that crosses the state east to west. Hispanics/Latinos are the large st and fastest growing ethnic group in West Central Florida (Census 2008). According to 20 07 population estimates, Hispanics
83 make up 22% (n=263,156) of the population in Hillsb orough County, 13% (n=41,392) of the population in Manatee County, 24% (n=259,240) o f the population in Orange County, 41% (103,608) of the population in Osceola County, 10% (n=46,245) of the population in Pasco County, 7% (n=63,787) of the po pulation in Pinellas County and 16% (n=89,507) of the population in Polk County (Ce nsus 2008). Among Latinas in these counties the largest ethnic groups are Puerto Ricans (41%), Mexican (17%), Cuban (11%), Colombian (4%) and Dominican (3%) (Cen sus 2008). The majority of Latinos in WCF live in or near the large metropolitan/urban centers of Orlando and Tampa Bay area. WCF is also known for its agricultural crops of orange, tomato, strawberry and peppers, which are h arvested in the rural parts of the counties (e.g., southeastern Hillsborough County). Latinos in the living in rural areas of WCF are more likely to work in agriculture and be o f Mexican decent. Tourism is an important industry in the area, with the beaches on the coast and several large theme parks along the I-4 corridor, hotels and restaurant s provide service level employment opportunities. Regarding cancer services, WCF has the only compre hensive cancer center in the state. In addition to private oncologists there are several cancer institutes, and treatment centers in the area. In Florida, the prop ortion of breast cancer deaths among Cuban (18.2%), Puerto Rican (18.3%), and Mexican wo men (20.5%) and other Hispanics (17.7%) is about the same compared to 15. 1% of white non-Hispanic women (Martinez-Tyson et al 2008). From the year 2000 to 2005, 1,409 Hispanic women were diagnosed with breast cancer in WCF, compared to 21 ,403 white non-Hispanic women. The age adjusted incidence rate for this five year period was 99.95 for Hispanic women and 150.21 for white non-Hispanic women (FCDS). Latina immigrants: Description of study population
84 In WCF Latinas born outside the US (including thos e who are foreign-born and those who are born in Puerto Rico) in WCF make up f rom 53% (n=138,987) of the Hispanic female population (U.S. Census Bureau 2002 ). Osceola County has the highest percentage of Latinas born outside the main land United States of 64% (n=16,220) compared to 40% in Pasco County (n=3,823 ). Fifty-four percent (n=56,980) of Puerto Rican women in WCF were born outside the mainland United States, compared to 60% (n=17,350) of Cuban women, 45% (n=2 1,906) of Mexican women and to 54% (n=42,751) of women classified as other Hisp anic. The majority (58%) of foreign born Latinas from Latina America, Central America a nd Mexico in WCF immigrated to the US between 1990-2000 (U.S. Census Bureau 2002). In addition, according to the 2000 census, 93% (n=157,979) of Latinas born out s ide the United States that reside in WCF speak Spanish. In Florida 61% of Hispanic nati ve-born women have health insurance with a mean family income of $61,321. In comparison 39% of Hispanic foreign born women are uninsured and have a mean family inc ome of $38,476 (U.S. Census Bureau 2008). Please note these figures do not fact or in a possible undercount of Latinos, a problem experienced when enumerating imm igrant or undocumented persons (Guzmn & McConnell 2002). Latinos count for half the population growth since 2000 (Gonzales 2008). While there has been a decline in the number of undocumen ted immigrants, the number of legal immigrants has been steadily increasing (Lars en 2004). Latina immigrants may be very different from their US born counterparts. For example, Latina immigrants have had different environmental exposures, diet and lifesty le in their native country that could either serve to protect against or increase the ris k of disease. Immigrant Latinas tend to be older than US born Latinas (Gonzales 2008). Lati na immigrants may also have more difficulty accessing health care services, especial ly if they are undocumented and/or do
85 not qualify for assistance programs. They may also be less familiar with the US health care system and biomedical culture compared to US b orn Latinas who might have a better understanding of the health care system and culture of health care in the US. Not to mention US born Latinas are more likely to be En glish proficient and thus better able to communicate with their health care providers. In addition, Latina immigrants may adhere to difference cultural models of illness whe re there is less focus on prevention. According to the Pew Hispanic Center, foreign born Hispanic women are less likely to be naturalized citizens than non-Hispanic foreign born women. Where as 55% of non-Latina immigrants are naturalized citizens, onl y 31% of Latina immigrants are. Other differences between US born Latinas and Latina immi grants include marital status, education and employment. For example, foreign born Hispanic women (63%) are much more likely to be married than native-born Hispanic women (44%). Regarding education, Almost half (49%) of all Hispanic women immigrants have not completed high school, compared with only 22% of the native-born Hispanic women. Women from South America have the highest educational levels, with 5 0% having attended at least some college. A larger proportion of native-born Hispani c women (64%) participate in the Labor force compared to 54% of immigrant Hispanic w omen (Gonzales 2008). Negotiating and navigating multiple roles: Research in context Over the last ten years, I have acquired a strong education in anthropology and public health as well as real life work experience in the health and cancer care arena. I have worked at cancer center and research hospital for the last seven years. My involvement with the Latina cancer survivor communi ty began in Tampa in 2003. Since then I have worked closely with LUNA: Latinos Unido s por Un Nuevo Amanecer, Inc. (Latinos United for a New Beginning) (LUNA, Inc.,) a support group for Latinas diagnosed with cancer. LUNA Inc. is a grassroots co mmunity based organizations. This
86 work has had both personal and professional signifi cance. It has been personally significant due to the significant amount of volunt eer time that has gone into helping plan meetings, coordinate educational and survivorship a ctivities, like Camp Alegria in 2005 and 2008 (Martinez et al 2008), write grants for sp ecific projects, find resources that include cancer treatment, low cost medications, and other types of assistance. Professional significance stems from my work at a m ajor cancer center where my responsibilities include creating community partner ships, and developing cancer educational programs and materials for Latinas that are culturally and linguistically relevant. I have also participated in several Span ish educational TV and radio programs about breast cancer. As an applied anthropologist I have had to navigat e multiple roles, the researcher, the advocate, the coordinator, the soci al worker, the student and fellow Latina. I have participated and observed the comple xity of cancer care and survivorship from multiple perspectives. These roles have also c aused me some level of frustration and to some degree affected my objectivity as I hav e been personally and emotionally invested both in my job and in the lives of the wom en I have met. The emic and the etic perspectives at times became blurred as I seemed to straddle both endpoints of the continuum. Women came to see me as a resource and c alled me for assistance with obtaining low cost medications, making medical appo intments, translation, obtaining prosthesis, and finding a doctor or treatment facil ity. I have seen the difficulty women encounter when navigating the health care system, e specially if they did not speak English, lacked insurance or were undocumented. The re are two cases that I discuss in the results section that illustrate the difficult s cenarios I sometimes encountered which furthered my understanding of health disparities an d of the every day realities of Latinas diagnosed with cancer.
87 There has been some debate in recent years about the role of advocacy and the special challenges ethnographic research with v ulnerable populations can bring (Whiteford & Trotter 2008). I faced several challen ges during the course of the research. First of all I was working with a vulnerable popula tion which had both personal and professional implications. Personally, I could not just interview the women and move on. After hearing about their personal struggles, I fel t obligated to advocate for them and made an extra effort to connect them to local resou rces and find information for them. On a few occasions, women called me to serve as an interpreter. I got to know a few of the women and developed a personal relationship wit h them and their family outside of my work and research. Personally, the interviews we re emotionally draining, especially when two of the women I interviewed passed away a c ouple of months after our conversation. Not to mention the subject matter mad e me ultra sensitive to my own health. Meaning I found my self, sometimes unconsci ously, checking to make sure I did not have cancer, as I knew so many people with this disease. Professionally, I sometimes found myself between a rock and a hard place. Latina women from the community called me for assis tance, some had found a lump and needed a mammogram others had been diagnosed with b reast cancer and had no insurance and thus were looking for an oncologists, surgeon and treatment facility. Imagine the fear and desperation women must have fe lt knowing they had cancer and then having to wait weeks to find a doctor or facil ity that would treat them. I can remember nine such cases. What made this extremely frustrating for me was that I worked at a major cancer center and yet was unable to help them obtain the cancer care they needed. For what ever reason, none of these ni ne women qualified or were eligible for care at the cancer center where I worked. Here, I was working at a major cancer
88 center and found my self calling community-based cl inics, local hospitals and private oncologists I knew to get women the service and car e they so desperately needed. From an anthropological perspective, anthropologist s have an obligation to the people they study and must protect the physical, social an d psychological well being of their study participants (American Anthropological Associ ation 1986). I have learned much about the language and culture of biomedicine, specifically related to cancer care. I have worked on several pr ojects where I have been responsible for overall coordination, protocol and proposal dev elopment; literature synthesis; qualitative/ quantitative data collection; evaluati on and data analysis. Currently, I am the co-investigator on two projects that specifically a ddress the cancer communication, information and educational needs of Latinos, but n either of these projects explores the cultural and social context of social support. My position as a researcher at a cancer enter and as a LUNA, Inc., volunteer and support group facilitator has given me entry into a community of Latina cancer survivors and to the biomedical community made up of oncologi sts, nurses and social workers. I have developed trust and established relationships with several cancer organizations, health professionals and specifically with Latinas diagnosed with cancer. Through the years I have build rapport and trust in the communi ty by attending support group meetings, participating in activities, and being th ere when someone needs assistance,. People know who I am and what I do. Working with or ganizations like LUNA Inc and at a major cancer center gave me credibility. I believe my dissertation research would not have been possible with out the level of trust and rapport I have with the women. As Bernard states, rapport is what makes it possible f or anthropologists to the kinds of research they do (Bernard 2002).
89 Relevance of community-based organizations Community based organizations like LUNA Inc are vi tal to the community and fill an important information gap. Grass roots organizat ions are attuned to the needs of their respective communities and are trusted sources of i nformation and assistance. LUNAs mission is to provide support and offer culturally, linguistically relevant education to Hispanic breast cancer survivors, their families, f riends and caregivers. The group was founded in August 2002 by a Latina cancer survivor, the first Latina support group in the Tampa Bay area. The first LUNA support group start ed with five members and then grew to have a network of over seventy members. The group held monthly meetings and coordinated social and recreational activities. Cur rently, LUNA has two support groups in the Tampa Bay area: LUNA de Pinellas is which meets at a hospital in Pinellas County. LUNA de Pinellas was modeled after the first suppor t group; however, it is open to both Latino men and women diagnosed with cancer. The sec ond LUNA support group meets at a local cancer center and is open to Latina wome n diagnosed with cancer, their family and friends. LUNA, Inc. has also partnered and coll aborated with local Latina groups and grass root organizations in Orlando and Kissimmee. LUNAs signature event is Camp Alegria, activity dates May 2005 and April 2008 (Ma rtinez et al 2008). Camp Alegria is a three day retreat for Latinas diagnosed with cancer The goal of this activity is to offer Latinas diagnosed with cancer a positive and memora ble experience through a variety of culturally and linguistically relevant educational, social and recreational activities. In 2005, 56 Latina cancer survivors attended the camp and this number grew to 91 participants in 2008. The research setting provides the background for the research results that are presented in the following paragraphs. Results from key informant and in-depth
90 interviews are included in Section 2. Section 3 det ails the results from the structured questionnaire administered in Phase II. Section 2: Key informant and in-depth interview res ults Key informant interview findings Key informants (N=5) were interviewed at the begin ning of the project. They include two social workers, an oncology nurse, a br east cancer support group leader, and a Latina community advocate. All five key infor mants were bilingual (English/Spanish) and intimately work and care for Latina cancer patients. On an average, the key informants had 7.8 years (range 612 years) experience working with Latina cancer patients, (range 6-12 years). Their i nsights inform the questions asked in the in-depth and structured interview and situate t he breast cancer experience of Latina immigrants with in context. Findings are presented thematically. Political economic factors and sociocultural stress ors that negatively impact Latina immigrants According to key informants the biggest problems L atinos faced in the United States were related to 1) health care access (5/5, 100%), 2) lack of health insurance (3/5, 60%), 3) language barrier (3/5, 60%), 4) fina ncial and economic issues (3/5, 60%), 5) immigration status (3/5, 60%), 6) lack of contin uity of health care (2/5, 40%), and lack of transportation (2/5, 40%). Regarding Latino immigrants they report that the p roblems mentioned above were magnified and that in addition they also had t o contend with additional challenges of adjusting to a different system and way of doing things. Four key informants (80%) mentioned navigating the health care system (4/5, 8 0%), the cost of living (3/5, 60%) adjusting to different family roles (3/5, 60%), str esses and worries about family in their native country (3/5, 60%) and not having family and other traditional support networks
91 (2/5, 40%), adjusting to minority status (1/5, 20%) and developing trust (1/5, 20%). This comment describes the impact of not having family i n the US on Latina immigrants diagnosed with cancer and describes the added burde n that places on them. She says, Not having family here is a big impact, really aff ects Latino immigrants. The social structure of the Latino is so strong and is grounded in the family. It is very rare that we do not help each other. What happens w hen you come here and you are diagnosed with cancer and your whole family is in another country? Because what I have scene in some cases, unfortunately is t hat some women wind up alone once they discover they have this problem [ca ncer] and have no one. Community Advocate Changing family roles, the need to fulfill social r oles and not being able to, was listed by 60% of key informants (3/5) as a source of stress. hmm within their own family or married couple and children the stressors are unbelievable, a lot of the people have multiple gen erations in their home, they are still trying to keep to the tradition of a man working because they have to. There is an elderly person they [women] are taking care of or they have children they are taking care of. There is frustration from the man because he feels he can not support his family and he can't do what he needs to do, women have to go out to work which may cause stress within the fa mily... Oncology Nurse Regarding the adjustment to shifting family roles o ne of the key informants shared a story about a patient she encountered. I remember very clearly this very lovely breast ca ncer patient who had recently arrived from Cuba and she was integrated into her f amily here [her sisters home] who had been here for many years. Her sister was pa rt of the first wave of Cubans that came to this country twenty-five years ago if not more; and so this family was very traditional, Catholic, middle-class Cuban family For the sister, who is newly diagnosed and just arrived into this c ountry, the adjustment into her sisters family who were all Cuban was very stressf ul for her. Very stressful. It wasnt easy. Because things were done differently. This family that was accepting her had made adjustments, had assimilated in some ways. And so that was stressful in many ways; roles between her sister and her mother were more blurred and less defined than they were for th is sister who was coming from Cuba recently. The burden on the sister who had ta ken her in when she was ill, having to take her to everything because the langua ge was such a problem and the lack of her catching up, not even having a driv ers license; she couldnt drive. It was tremendous. There was a lot of stress and st rain and both of them were really extraordinary women and very sensitive to ea ch other, you know, very mindful of each others burdens and stresses and wh at not but it was very difficult. Social Worker #1
92 Key informants also discussed the stress and anxiet y Latina immigrants with breast cancer experienced (4/5, 80%). One of the stressors described was that many Latina immigrants could not afford not to work during canc er treatment and thus endured the side effects of chemotherapy on the job. For exampl e, one key informant observes: They try to go on with life. You know, they do no t stop working. If they do not go to work they lose their jobs. Latina immigrants go through the cancer, um, the chemotherapy, the radiation and they do not stop wo rking. They have to go to work. Many of them, most of them do not have the l uxury of taking time off because they do not have that benefit. Social Worker #2 The following quote provides a summary of the stres sors Latina immigrants confront. I have worked with women from Mexico, Cuba, all ov er Latin America; they have a lot more anxiety and stress. Cancer is not the on ly problem for Latina immigrants diagnosed with breast cancer. The majori ty of them have other problems that affect them. Family or financial prob lems, immigration all this and on top of it they have cancer that makes them e ven more stressed. They have less access to community resources or public a ssistance, social security or welfare. This causes them more worry Support Group Leader They also discussed the difference immigration stat us had on access to cancer care. For example, one key informant states I see a big difference in some of the women that come and they have no legal documentation from the women that have a visa or ha ve political asylum in this country. They get Medicaid right away therefore the y have access to much more services than a woman that comes from Mexico or El Salvador or Per that are working you know, theyre not on the books and the yre paying them two dollars an hour which is much more than what they w ould make back home but still not enough for them to survive Social Worker #2 Similarly, another informant points to the limitati ons of the Medicaid system as she describes the challenges Latina immigrants face and says, It is challenging because some segments of our Lat ina population come to us with multiple psychosocial issues. Financial issues transportation issues, childcare issues. Some of our Hispanics or Latinas come with issues of not being documented. Their legal status in this count ry is compromised and thats a whole set of problems and issues. Also patients wh o come with Medicaid insurance which we all know in some ways are very l imited in terms of what is
93 covered for them. I can almost say there is a puni tive aspect to the Medicaid system because of great limitations in services. Social Worker #2 Need for patient navigators Four key informants (80%) mentioned the need for p atient navigators that could assist patients with resources and navigate Latina immigrants through the maze of cancer care and serve as a trusted source of inform ation. For example, the support group leader relates, I think women need to have a personal contact with someone when they go for treatment, for the chemo, to have someone they feel they can trust to make sure they get the care and assistance they nee d Cross cultural similarities and difference I asked key informants to describe some of the dif ferences they observed between Latina immigrants from various countries. T wo key informants (40%) said Mexicans were more quiet and reserved compared to L atinas from other parts of Latin America and one said that Mexican women were more l ikely to consult traditional healers. Four of the key informants (80%) said dist inctions were regional such as between women from the Caribbean, Central and South America and Mexico. However, they went on to add that within the context of brea st cancer that being immigrants made more of a difference than what country they were fr om. The following quote summarizes the thoughts expressed: I can't tell you that, can't give you concrete dif ferences, they are more nuances. I can not think of any examples when we come here we are immigrants, when it comes to cancer the experiences are the same; there are more similarities than differences. There are so many issues that are goin g on that relate to everyone, worry about taking care of kids, am I going to be m utilated, the same fear, and part of it is fear of the unknown, we do not know t hat much about the disease until it affects us then we are fighting emotions a s we are trying to learn more about what happens We have the same concerns regar ding breast cancer; we all face similar challenges Community Advocate
94 English proficiency, informational support and comm unication Key informants (4/5, 80%) discussed the impact not speaking English had on provider communication, understanding and informati on access. One informant also shares the story of how some of her Latina patients who are coming in for treatment do not know they had breast cancer. They are told they have BCIS which stands for breast carcinoma in situ. And since the word cancer is n ot used they do not know it is cancer. She says: There is a type of breast cancer called BCIS and t hey [Latina patients] will talk about it like it is not really cancer and they will say BCIS (pronounces bisihayes in Spanish) and they are not saying the word cancer and it is not till I am sitting there and they tell me I had un tumorsito (a little tumor) and they took it out and it is not a big deal and I do not know why I am here. I will tell them they have breast cancer and they will go what? They will r epeat BCIS They have never been told they had cancer Oncology Nurse Three key informants (60%) specifically mentioned h ow English proficiency affects Latina breast cancer patients understanding of thei r disease and treatment. For example, a social worker observes: The ones that have some command of English have a little better understanding of what is going on, they are kind of more able to access information, or read information, more informed and on top of it. The on es that do not speak English are completely lost. They do not know what is going on. It is a very scary thing. They will tell me, they are very nice and smile a l ot but do not have a clue what is going on or what their doctor is saying . Support Group Leader Similarly, the oncology nurse explains; I have also noticed that those that speak a little English can actually get in trouble because the doctor assumes they understand everything they say I will have a couple where one speaks English and the othe r is clueless and I will ask them if they want me to be there with them when the doctor comes so that I can translate and they will tell me I want you to stay because I can understand some things, I can pick up a few words and then I am tot ally loss... that is why they are totally loss...
95 She goes on to say how some of her Latina patients do not understand why they received this treatment versus that treatment. As s he continues you can sense the frustration building in her voice. They will ask me why does she get a pill and I do not know... they will think not taking the pill is a bad thing when it is a good th ing... they also hear the word positive but positive is usually not good in canc er and it makes it hazy. It does not matter if they can speak a little English, they do not understand. The doctors want to get through and do an assessment but they a re not getting a good assessment. You take the time, get someone that can translate, get someone on the phone... the person may be in pain and the doct or just wants to get out of there to the next patient. They are not getting acr oss, so it is frustrating to me. I have explained to the doctors that they [Latina pat ients] will smile and nod and I tell them you are not getting true information from these people they will tell you 'fine, fine, fine" oh little pain" but it is not a nywhere near when I get in there and ask the same question in Spanish because they do no t want to sound stupid or say the wrong word. We need to tell the doctors tha t is going to take a little longer but you need patience, got to be able... to ask the right question... the doctors lecture and tell the patient what they need to and then at the end they ask the question "Did you understand, do you have a ny questions?" Instead of beginning the visit with a question... by then they [the patients] are lost. Oncology Nurse Another point brought up by two key informants (40% ) is that, in their opinion, Latina patients are not always given treatment options or even know there might be other options available. For example, one key informant s tates: Oftentimes women are not even aware that there are options available. I do not know how much explanation takes place, quite frankl y with Hispanic women by healthcare providers if there is an option. Maybe sometimes, I do not know. Im just talking in general. I think maybe because of t he indigence or because they are perceived to be indigent the options are not ev en discussed. Social Worker #1 Frustrations with a broken system and lack of psych osocial programs for Latinas Several key informants (3/5, 60%) also voiced thei r frustration with the health care system over how difficult it was for Latinas t o access quality care if they did not have insurance or did not have good insurance cover age. They also shared the personal struggles they encountered in trying to connect Lat ina immigrant patients with
96 assistance, follow-up and treatment. Such as the f ollowing quote from one of the key informants: I feel frustration over the system over a system that treats them [Latinas] as second class citizens. They are not getting the car e they deserve um they are not given choices. They do not fully understand, no one takes the time to understand what is really going on... they do not f ollow-up with patients that have mammogram that come back questionable. No one ever follows up with them to come back and do another one and so then a year goe s by and by then we have an issue that could have been solved and now we are looking at a metastasis issue. Just pure negligence of the system. That is the hardest thing and lack of information about where to go, where to send them. Oncology Nurse One of the social workers interviewed states that one of the greatest challenges for Latina immigrants has been to access services in their language in a culturallysensitive and relevant context.... It is an added stressor for Latinas coming into a system that is perceived by them as being very Angl o, very foreign and this is discomforting and stressful The five key informants interviewed (100%) stated that psychosocial and mental health services were not readily available to Latin a immigrants diagnosed with cancer. For example, one key informant states, These programs are generally not available for Lat inas because there are not that many providers that are prepared in the area t o provide the services. Number one because many of the Latina cancer surviv ors and cancer patients do not have insurance, therefore they have no acces s to counseling services. There is not that many counseling services that are provided, you know, free or in Spanish. She goes on to say some people fall through the cracks because there are not enough bilingual people. There are not many Latinos that are providi ng counseling Theres not that many counseling services for Hispanics that ar e available. Social Worker #2
97 Sources of Support: Family, Faith and Spirituality Three key informants (60%) talked about faith and spirituality and how spirituality and faith provided support and help Latinas cope wi th breast cancer. Family was also identified as a source of support by four key infor mants (80%). For example, I think number one is religion or faith. I think that one c oping mechanism is escaping to watching the novelas or you know, trying to focus o n what is important to your family and putting yourself last on the list of priorities. Similarly another key informant relates, I think most Hispanics have turned to their families for emotional support and for distraction. They draw on their faith position, pr aying and attending religious services, talking to their priest or reverend. Gender roles, social relationships and breast cance r Key informants (4/5, 80%) also discussed the influ ence gender roles had on support and the impact breast cancer had on social relationships. The following quote from one of the key informant summarizes some of th e sentiments expressed. I think that in many instances the Latino culture defines roles much more; not rigidly but much more definitively. Very specifical ly males do this and the females do that. Again, not as stereotypical but in very g eneral terms, it really varies according to education and background. With breast cancer, roles in some way begin to blur, not as blurred as in their American counterparts but more subtly. Oncology Nurse Key informants (3/5, 60%) also talked about cultura lly defined social roles stated that changes is social roles were also a source of stres s for Latinas with breast cancer. I think that in many instances the culture defines roles much more; not rigidly but much more definitively. Very specifically males do this and the females do that. Again, not as stereotypical but in very general ter ms, it varies according to education and background. With breast cancer, roles in some way begin to blur, not as blurred as in their American counterparts bu t more subtly. Social Worker #1 Another key informant relates, Yeah, the men, when they have cancer the women are there they want to know what they can cook for them, how they can help, wha t they can do, what are the
98 things They are very involved in making sure they [men] can get better When the women have cancer there is no one looking out for them unless they have a daughter, unless they have somebody that wil l come with them, usually they do not. They are lucky if their husband is the re but they sure as heck arent saying what can I cook for them, what can I do. She goes on to say: Women [diagnosed with cancer] want to continue to do the stuff around the house like clean and cook and they feel guilty when they can not. It is one of the things they say, I am not doing anything; I can not do the laundry; I can not cook anymore; I do not do anything They get home and ar e tired and say my husband is complaining and the kids want my attenti on. There is not that give and take and their whole thing is that he [husband] is out there he is working he is doing what he has to do I do not want him to fee l like he has to come home and take care of me... Social Worker #2 The topic of divorce was brought up by 3/5 key inf ormants (60%). Two (40%) reported they saw an increase in divorce and/or in Latino men leaving their wives during or after cancer treatment. While one (20%) reported that she had actually seen very few Latino men leave their wives and that this phenomen on happened across the board regardless of ethnicity. All three key informants s aid this happened where relationship problems existed before the diagnosis and that you did have men that were very supportive. Sixty percent of key informants (3/5) a lso mentioned they observed that Latina women tended to go to the doctor appointment s alone or with other female relatives. One key informant specifically talked ab out the differences she saw if it was a Latino man with cancer or a Latina woman with cance r. She says, A lot of Latina women go through breast cancer by themselves If it is a Latino man that has cancer a woman is by his side at every appointment at everything, if it is a woman that is going through it [cancer] either they try and hide it from the person they are with or they do it alone. I mean th ere are countless husbands and partners that I have never met. The husband may be involved but they are just not there, and I am not really sure if it is t he wife that is doing it to protect them or if they just do not want to deal with it. B ut Latinas go through it alone a lot of times. In comparison to women from other cul tures... as far as Caucasian American it is definitely different; a lot of the s pouses are with them both men and women. Oncology Nurse
99 One of the key informants went on to add that Latin o men get a bad rap, when they may be doing things that are supportive even if you do not see them at the doctor appointments with their wives. She states: But you know I want to say that Hispanic men, with the exception of those men who for whatever reasons do not have the wherewitha l or the psychological resources you know, are going to be there for thei r wives. They are going to be very concerned and very caring. You may not see the m at the meetings or doctor appointments but theyre there for their women I t hink across the board Latino men care about their wives, their women. Theyre sc ared, theyre stumbling, and they want help. They feel powerless; they may not k now what to say. Often times theyre afraid even to approach their woman intimat ely because they think they are going to hurt her; having irrational fears acro ss the board. American and Hispanic men perhaps feel they contributed to this cancer in some way, by some sexual practices and what not. Its irrational but its there. I would say that it is quite a profound experience for the men as it is fo r the women and requires quite a bit of adjustment. Its a tremendous learning op portunity for both because now they have to learn to talk to each other in a diffe rent sort of way, ask for things that theyve never had to ask before and come out o f their comfort zone. And so roles are beginning to be re-defined in ways that a re different. I do not want to be a part of people, any profession that bad-mouths Hi spanic males. Theyve been given a bad rap for so long. I have seen very good marriages and very good supportive husbands. Social Worker #1 She went on to say that perhaps a reason you see me n less is because breast cancer is a feminine disease. Particularly when you are referring to anything th at is of a feminine nature and certainly breast cancer is a very feminine thing i t involves the female gender for the most part . And the women have to support e ach other, like bond around this issue .This is a very gender-specific female d isease and that the women have certain sensitivity and understanding for the disease that is not present with their spouses or significant others. Social Worker #1 Sexuality and intimacy Three key informants (60%) mentioned the impact br east cancer has on sexuality and intimacy and stated this was an area that neede d more attention. One described the biological changes that occur after treatment and i llustrates the impact this might have on sexuality and marital relationships. She says:
100 Especially women that have been through chemo, the re are changes in vaginal secretions, changes in libido... especially younger who women are going into early menopause after treatment... they experience dryness, painful intercourse. They need to talk about it... But it is difficult b ecause there is no where to send them . There is stuff they can do. But you have to be careful because there are estrogen creams that might not be good or they can try different lubes. The dryness does not go away. Tons of Latina women do n ot know about these things. Oncology Nurse Another key informant relates how these changes aff ect the marital relationship. The men are like I have been beside you through b reast cancer and chemo and radiation and now it has been a year and a half. It is a long process and now it is time, lets get back to our usual stuff and in rea lity it is not and that is what the women are thinking. They think who am I, the men h ave put up with this and now I cant say I am not in the mood etc... Support Group Leader Disclosure and the burden of cancer Three (60%) of key informants explained Latinas fe el they must protect their family and children and thus do not communicate the ir diagnosis or how they feel emotionally and physically. They went on to say tha t women especially wanted to protect their children regardless of their age (e.g., inclu ding both adult and minors). Two out of the three key informants who brought up this issue stated that compared to women from other ethnic groups, communicating with family seem ed to be more of an issue for Latinas. The following quote illustrates this point well. And then issues around communicating to their kin about cancer... There is a very pervasive orientation among the Hispanic popul ation that women are very protective of their children and family and they fe el that they have to guard and protect their childrens innocence and they struggl e about telling parents or their children of their cancer situation. In some ways th ey do not want to puncture that innocence, to rob them of that and cause them suffe ring. So to break through that barrier sometimes can become, can be a challen ge. I do not want to say, I do not want to generalize but you see a tendency in that direction. But when you work with them as a group and you educate, and you inform as to what the benefits are in sharing they come around. When yo u give them actual tools and skills and a dialogue how to tell them, what to say to them, theyre very appreciative that youve given them, equipped them with the tools and skills which empowers them. Social Worker #1
101 Support groups: Peer support and support groups were mentioned as important sources of support for Latinas with cancer by 60 (3/5) key inf ormants. Such as the following comment illustrates: So because of the value of family and its multi-g enerational, Latinas feel comfortable as a group. So culturally relevant sel f-help groups or group discussions and support groups are very important a nd very relevant and effective means of providing Latinas the kind of so cial support thats critical for people to get through cancer experience in coping a nd adjusting They are also a very effective way of getting information and res ources to women. And I think its very empowering for women. It helps them resto re the control. Social Worker #1 In-depth interview results: Sociocultural context o f social support and breast cancer The data gathered from these interviews provides r ich information further contextualizing the experience of immigrant Latinas diagnosed with breast cancer. Participants were given pseudo names to protect the ir identity and preserve their privacy. Quotes are identified as follows: name, ag e, nationality, cancer stage at diagnosis. Each interview began by asking the women to list the most important things in their lives. The top three responses were family (7 1%), health (64%) and children (43%). Participant demographics (N=28) Participants ranged in age from 35 to 68 years, wit h 57.1% under 50 years of age. Participants represented nine different nation alities: 24% were Puerto Rican, 24% Colombian, 11% Venezuelan, 11% Ecuadorian, 14% Cuba n, 4% Argentinean, 4% Mexican, 4% Peruvian, and 4% Panamanian (See Figure 4.1.).
102 Figure 4.1. Native country of In-depth Interview Pa rticipants Ethnicity n=28Argentina 4% Colombia 24% Panama 4% Cuba 14% Ecuador 11% Peru 4% Puerto Rico 24% Mexico 4% Venezuela 11% Almost 30% of participants were monolingual Spanish speakers and 17.9% had not obtained a high school degree, 28.6% were high school graduates and 53.6% at least some college. The following table (Table 4.1) summarizes the demographic characteristics of in-depth interview participants. Table 4.1. In-depth Interview Demographics (N=28) Item Response Percent Language spoken Spanish only Spanish/non-fluent English Bilingual 28.6 32.1 39.3 Educational attainment Less than High School High School Graduate Some college or College Graduate 17.9 28.6 53.6 Current employment Home maker Half time Full time Unemployed Disability Retired 32.0 25.0 28.6 7.1 3.6 3.6 Current household income 10,000 or less 10,001-30,000 30,000-50,000 50,000 + 29.6 44.4 18.5 7.4
103 Current marital status Married/Partner Divorced Single Widowed 67.9 17.9 10.7 3.6 Duration of time in the USA 5 years of less 6-10 years 11-20 years 21-30 years 31plus years 21.5 14.3 17.9 35.7 10.8 Duration of time in city where they currently reside 5 years of less 6-10 years 11-20 years 21-30 years 39.2 32.1 17.9 10.8 Year diagnosed with breast cancer 2007 2006 2005 2004 2003 2002 7.2 32.1 21.5 17.9 14.3 7.2 Stage at diagnosis I II III IV Do not know 21.4 32.1 35.7 7.1 3.6 Type of treatment Lumpectomy Mastectomy Missing 39.3 57.1 3.6 Insurance status Currently have insurance Do not have insurance 60.7 39.3 At the time of the interview, 32% of the women were homemakers, and 28.6% were employed full time. Interestingly, prior to th eir cancer diagnosis, only 14.3% were homemakers. Overall, 39.4% reported having a negati ve change in employment status (e g. full time to part time or full time to disabled). Currently, 74% have a household income of less than $30,000, and 25.9% have an income above $30,000. Prior to their cancer diag nosis, fewer women (51.8%) reportedly had an income of less than $30,000 and m ore women (48.1%) reportedly had a household income above $30,000. Overall, 32.1% ha d a negative change in income (e.g., had a lower household income after the cance r diagnosis).
104 At the time of the interview, 67.9% of the women we re married. When asked about duration of time spent in the United States, just over 20% of the women had been in the county five years or less, 14.3% of the wome n had been in the country for 6-10 years, 17.9% of the women had been in the country f or 11-20 years, 35.7% of the women had been in the country for 21-30 years, and 10.8% had been in the country for over 30 years. All the women who participated in the in-depth inte rviews were diagnosed from 2002 to 2007, meaning they were within five years o f their diagnosis. The participants displayed varying stages of cancer at diagnosis; wi th 21.4% of the women diagnosed with stage I breast cancer, 32.1% with stage II, 35 % with stage III and 7.1% with stage IV. In order to treat the cancer, the majority of w omen had a mastectomy (57.1%), while 39.3% had a lumpectomy. A majority also received ch emotherapy (78.6%), ranging from 4-100 sessions, and radiation (75%), ranging from 1 -60 sessions to date. Currently, 60.7% of the women have some type of hea lth insurance, compared to the 53.6% who had insurance before the cancer diagn osis. 17.9% of the participants obtained insurance after being diagnosed, while 3.6 % lost their health insurance after the cancer diagnosis. Some of the women who were no t insured prior to diagnosis were treated under charity care at some of the local hos pitals or cancer centers or were enrolled into the county health care plan; if they met program qualifications (Additional demographic information is available in Appendix F) At the time of the interview, 57% of participants had attended LUNA, Inc. support group meetings. The next several pages detail the results from the free lists and the open-ended portion of the in-depth interviews. The percentage of participants who gave certain responses have been included, where applicable. The data are presented thematically.
105 The immigration experience: Coming to America In order to situate the breast cancer experience w ithin the immigration context participants were asked to describe their immigrati on experience and what it was like coming to America. Almost half the women interviewe d describe the experience of coming to the United States as positive (13/28, 46% ), and almost half described the experience as negative (13/28, 46%). A couple (2/28 7%) of the women said it was ni mala, ni buena, meaning neither good nor bad. Women who described t he experience as positive talked about coming to the US to get ma rried or be with family, children and or grandchildren (15/28, 54%), finding employment ( 30%) or finding a church that helped them get settled (6/28, 21%). Women who had an over all negative experience coming to the US talked about coming here alone (11/28, 39%) and leaving their family behind and about not being able to communicate in English (8/2 8, 29%). Some (6/28, 21%) shared they were fleeing abusive relationships or oppressi ve situations back in their native country. One participant, who had a particularly trying time acclimating herself to American culture, recalled her experience: Oh my Lord, my God, I thought I came to hell. I le ft my family, my sister, my two bothers I cried and cried. We [mom and I] did not know anyone here; we came to stay with a friend of a friend of a friend . We had $5 in our pockets. We met a couple that took us to church, and they helped us I did not know English and was very lonely. Finally, we brought my family over and they did not like it here, so they went back. My mom did not want to go back . I am grateful because I met my husband here. No one told me about the diffe rent culture. No one helped me but the church. They told me what to do, how not to honk the car, not have radio too loud, no music loud in the apartment. In our country, it is different. It was lonely. I did not know the language or the laws ; it was very hard. But now I am an American citizen. [Blanca, 46, from Ecuador, Stage II] Thirty nine percent (11/28) of the women interview ed came to the US alone, 18% came with their husbands, 32% (9/28) came with thei r children or family, and 11% (3/28) came with one of their parents. Eighty nine (25/28) percent said that most of their family
106 stayed behind in their native country when they imm igrated to the US, and 96% (27/28) said they currently had family and friends in their native country. Laila, a 63 year old Colombian, with Stage II breast cancer described he r experience leaving family and friends to come to the United States: At the beginning it was very good. I came to see m y son. I did not want to stay, but he convinced us to. Then it was very hard; we w ere here with out our family. I felt like I was missing something. I had left my da ughter. In our country, there is more community. You can take a bus or taxi easily a nd go buy what you need, and here you need to drive. Over there, we have a l ot of family and friends. Here you are alone, and here is where I got sick. The participants interviewed also shared some of t he immigration-related difficulties and stresses they encountered when the y came to the US. Some women cited the risks associated with crossing the border illegally (2/28, 7%), discrimination (3/28, 10%), and not knowing the language nor under standing the culture here (11/28, 39%). Some of the women (8/28, 28%), who were profe ssionals back in their native country, also talked about the adjustment and stres s caused by not being able to work in their fields here in the US and having to work serv ice level jobs (e.g., house cleaning) or at jobs unrelated to their profession back in their native country: It was horrible, horrible. I came here and started working. I had a social security card and an open visa; I came here to work and have had a very difficult life here. I do not know how it would have been in my co untry. I have a degree in child psychology. But here I work at an insurance c ompany. I do not do anything related to my field. Things have been horrible for me; I have had immigration problems, and I have had a lot of bad luck. [Isis, 44, Venezuelan, Stage I] When asked why they came to the US, the majority ( 24/28, 85%) said they came in search of a better life for themselves or for th eir children and family. Some (6/28, 21%) came to find work and after facing difficulty findi ng jobs in their native country. For example, Kati, a 50 year old Ecuadorian with Stage II breast cancer, cited employment opportunities and the betterment of her family as h er reasons for coming to the United
107 States: I came to this country to work and support my mother and to support my sons studies [son is studying in Ecuador]. My mom died t he same day I finished chemo. All I have left is my son. You leave everything, and I co uld not go see her When asked how often they spoke to their friends a nd family in their home country, the majority (21/28, 75%) of the women sai d they spoke with them at least 2-3 times a week. Most of the communication occurred by phone alone (17/28, 61%), although some (9/28, 32%) used both phone and the I nternet to communicate. Forty-six percent of participants stated their family in thei r native country depended on them for remittances. Half the women (14/28, 50%) stated tha t the majority of their close family and friends lived in their native country, not in t he US. Cultural expectations and gender roles: What happen s when someone is sick? Cultural norms about gender roles effect who provid es support to someone that is ill and what he/she should do to assist someone who is sick. According to participant responses, men were expected to: be responsible for the paper work, manejarlos papeles, and assist with insurance issues and other medica l related documents (14/18, 50%), drive the sick person to/from the doctor appo intments (6/28, 21%), work (10/28, 36%), and take care of the bills and help financial ly with such things as buying medications (11/28, 39%). Some women (6/28, 21%) sa id men do only what is necessary and only help if they are needed (e.g., m ight help clean or might visit). Participants related that women are expected to: nu rture and care for the sick person (13/28, 46%), assist them with their personal needs (e.g., bathing and feeding) (7/28, 25%), give love and affection (7/28, 25%), cook and /or deliver food and home remedies (such as teas) (15/28, 53%), clean and maintain the house (18%) and take care of children (5/28, 18%).
108 When asked what men typically do when someone is si ck, Maria, a 40 year old Stage III breast cancer survivor from Colombia, res ponded: More the paperwork stuff, talk to the insurance a gent, this paper, that paper. They are in charge of the bills and account s, how things are going to get paid, what documents we need, and women are more focused on taking care of the patient. That division is very marked. To further understand gender roles in relation to caretaking during illness, participants were asked to describe what happened w hen a female member of the household got sick in their native country. The res ponse most frequently given was that the family would come together and help the ill fem ale care for her household (15/28, 53%). If the patient was unable to fulfill her dail y household duties, her mother or mother in law would come and assist her in managing her il lness and her household, including assisting her in taking care of her husbands needs If the patient had a daughter, the daughter would take her mothers duties, while she was ill. If the patient did not have a daughter, but had a sister, her sister would step i n. Neighbors also played an important role and were called upon for assistance (4/28, 14% ). It was important that female relatives and/or neighbors bring food or soups (8/2 8, 29%) and remdedios caseros (home remedies), namely cosimientos (teas) that were made for the sick person (12/28, 43%). When asked what female family members and/or neigh bors might do to help a woman who had fallen ill, Raquel, a 47 year old Puerto Rican woman with Stage unknown breast cancer, answered, They would make h ome remedies, buy medicines, if they brought food, they might stay and help clean a nd do the chores, take her to the doctor, stay at the hospital, and bring chicken sou p Some of the participants (7/28, 25%) also mentione d that it is important that females offering assistance to the ill woman not te ll others or young children that she was sick. Leonor, a 39 year old, Puerto Rican, Sta ge III breast cancer patient, noted,
109 Latinos are more closed about this. Talking about being sick is a taboo you never told anyone when someone was ill. It is very private; yo u do not talk about it. And 18% (5/28) mentioned it was important the family mainta in un ambiente tranquilo (tranquil environment). Several participants (10/28, 36%) also shared that women who were sick were usually accompanied to the doctor by other women (e .g., a sister or friend). Men, on the other hand, went to the doctor accompanied by their wives and/or children. Some of the participants (3/28,11%) mentioned that middle class families sometimes had a household helper/maid to help clean and cook, which would relieve the sick woman from her household duties. Several women (10/28, 36%) discussed how different it was to be ill here, in the US, compared to being ill in their native country. For example, as immigrants, women in the States have to continue to work through their i llness and do not have the extended family support they had in their native country. So me (8/28, 29%) also mentioned how the lack of the extended family support networks in the US also effect the role of men; in the US, men had to play a more active role in carin g for their wives when they were sick and had to learn to do some of the things that were traditionally done by women (cook, clean, care for children, attend to personal needs, etc.) in their native country. Womens role Through participant observation (at support group meetings, cancer events) I noticed that women talked about how cancer had affe cted their ability to do certain things that they as women were suppose to do and be like a good mother or a good wife and how this caused them additional stress and worry as well as put a strain on personal relationships and affected the support the y received from their husband or children. For example, I remember a woman saying ho w she was expected to still have
110 dinner ready for her husband and to have the house kept even though she was in treatment. Or that it was her wifely duty to perfor m (sexually) and keep her husband satisfied. Women also expressed the importance of k eeping the peace and tranquility at home and sometimes felt they could not reveal how t hey felt as to not disrupt the lives of those around them and to keep order and harmony wit hin the household. Thus I felt it was important to include a free list question on wo mens role and then later use some of the freelist responses in the structured questionna ire. Results are listed below. The roles or things that a woman should be that were mo st frequently listed were ama de casa (homemaker), to be a wife, to care for the family, to work, and to be a mother (Table 4.2). Table 4.2: Freelist Women's role Items mentioned Frequency % To be a homemaker/ Ama de casa 16 57 To be a wife 15 54 To care for family 14 50 To work 13 46 To be a mother 13 46 To be a good daughter 8 29 To educate herself 8 29 To educate children 7 25 To Actualisarse 6 21 To have faith 5 18 To love self 5 18 To be a good friend 5 18 To respect her body 4 14 To be a good lover 3 11 To be honest 2 7 To take care of herself 2 7 To be responsible 2 7 To be courageous 2 7 To be compassionate 1 4 To be a good citizen 1 4 To love God 1 4 To give love 1 4 Participants also discussed the reaction of men and women when facing illness, Leslie, a 52 year old Argentinean suffering from State III breast cancer, stated:
111 It depends on the economic situation but women ar e stronger, a woman has to be very ill to stop working and stop her role as mother, wife, and the housework. It is expected that the woman continue. If it is a man and it is not serious, he may continue to work, but he is weaker and you need to take more care of him more than you do women. A common sentiment expressed among the participants was that women were still expected to be strong and tolerant (75%, 21/2 8), even if they were sick. This especially held true once the women were living in the United States (10/28, 36%). As a result of these expectations, 52% (11/21) of partic ipants also shared that getting sick was even more stressful because they were not able to fulfill their obligations as a mother, wife, homemaker and worker ( trabajadora) Unless she was very sick, a woman was still expected to continue these roles and to c ontinue to work. The respondents went on to add that when a woman was so sick that she wa s not able to fulfill these roles, there was havoc in the household. Since she was usu ally the one that maintained order in the house, the men were at a loss regarding what to do. The following quote summarizes the sentiments expressed by the responde nts regarding a womans role in the household and in the family: Women are more conscious and knowledgeable. We tak e better care, a woman gets more involved. Women are stronger than men. Th e woman is the one that does everything. If something happens to me everyth ing changes, everything stops, and the kitchen and cooking go haywire. When it is the woman who is sick a lot of things change. As a woman, certain things are expected from you because you are a women and this causes more stress you always think if something happens to me what is going to happen to my family, you have to be strong and tolerate men expect you to be strong. [Manila, 54, Cuba, Stage I] Delicate balance between telling and protecting: co mmunicating with family about breast cancer When asked how they had communicated their diagnos is to their families, 79% (22/28) of the respondents said they told their fam ily right away; 7% (2/28) said they had not told their family, and 14% (4/28) said they wai ted until after their surgery or after they
112 started the treatment to tell their family. Some of the women (5/28, 18%) shared that this was one of the most stressful parts of their cancer experience, especially if their parents were elderly or lived in their native country. I ob served that participants were especially protective of their elderly parents and tended not to communicate their pain, feelings of anguish or go into detail about negative aspects of their treatment with them. They feared the negative news might cause additional str ess and worry for their parents and affect their health and well being. Carmen, a 49 ye ar old Colombian with Stage III breast cancer, relayed the difficulty she faced telling he r mother about her cancer diagnosis: I waited over a month to tell her, my mom has diab etes and I did not want to scare her. We lost our house because of the cancer treatments and stayed with nothing We had to sell the house to pay for the tr eatment and medical bills even though I have insurance I did not tell her th at. I told her I lost my hair and then I went home to my country to visit her for a w eek so she saw that I was ok. I did not specifically ask participants who, specif ically, in their family they told. However, A few participants (5/28, 18%) delineated they told their siblings first and then waited to tell their parents. Some waited to tell them after the diagnosis and others waited until they were done with treatment. Sara, a 55 year old Puerto Rican told her siblings first, so they might help prepare her mother for the news. Sh e says, I told by brothers and sisters first (they live out of state and in Puerto Rico) so they would be prepared when I told mom (mom lives in Puerto Rico). I told her a w eek alter the diagnosis. A majority of the women (20/28, 71%) stated that t heir familys reaction to their diagnosis caused them additional stress. Women want ed to protect their families by not burdening them or causing them worry, so many (14/2 8, 50%) did not share all the details of their treatment or tell their families w hen they were not feeling well, were in pain, and/or were upset or distressed. Laila, a 63 year old Colombian with Stage II breast cancer, described the emotional toll of prot ecting her family from her diagnosis: I devote myself to my children, grandchildren, but no one knows the changes inside of
113 me, what I really feel, sometimes I feel like I am going to implode trying not to demonstrate to my children how I feel inside (cryin g). To further illustrate this point I will us the cas e of Maria a 58 year old Colombian woman, who I interviewed in Phase II. As background Maria was recently diagnosed with breast cancer and has just finished her radiat ion treatment. She lives with her elderly mother and has a daughter who lives out of state; she does not drive and depends on public transportation. She is frightened and frustrated. For the last few months she endured excruciating abdominal pain. Mar ia just found out the cancer had spread to her intestines. The doctor told her the s ituation did not look good and that she needed to talk to her family. Maria simply nodded y es. The doctor did not understand why she was not calling her family. When the doctor left the room she cried and shared with me how stressful it was for her to conceal the intolerable pain she felt from her family. She wanted to protect her mother and her da ughter from her agony and thus carried the weight of her pain alone. She related t hat it was her duty to maintain the peace and tranquilidad (tranquility ) Access, insurance and English proficiency: Does bei ng an immigrant affect Cancer treatment? When asked if they thought that being an immigrant affected the cancer treatment they received, several women (7/28, 25%) began by stating that the treatment that they are receiving here is better than what th ey would have received in their native country; they said it was a blessing that they were in the US when they were diagnosed with cancer. Laila, a 63 year old Colombian with Stage II breast cancer, recalled her reaction to her diagnosis: I fainted when they told me I had cancer; I though t I was going to die at that moment. That is what happens in our country. Thank God there is a lot of
114 medicine here. I am OK now; they had to remove my b reast and I have an implant now. That hospital gave me life. If I had b een in Colombia, I might not have lived; they do not have what we have here. In contrast some women (8/28, 29%) also revealed that they had debated going back to their native country for treatment, fearing they would not have the support the needed if they stayed in the US for treatment. However, no ne of them went back for treatment. Melania, from Colombia who is married to an America n man explains why she thought of going back to Colombia for treatment. I thought about going back for treatment because here in the US when you go to a hospital room you see people alone, by themsel ves. In my country the person is never by themselves I do not have family here, I am alone. I have my husband, but if this had happened in my country I w ould have been surrounded with love and someone would have always been there with me and they would be attuned to my needs [Melania, 43, Colombia, Stage I] Of the 28 women interviewed, 46% (13/28) stated tha t being an immigrant did not affect the treatment and care one received for canc er in the US, 11% stated that it did have an effect, and 43% (12/28) said it sometimes h ad an effect. Of those that reported it had an effect or sometimes had an effect, 53% (8 /15) said the sub-standard treatment was due to lack of insurance, and the other 46% (7/ 15) said sub-standard treatment was due to lack of English proficiency on the part of t he patient. The following summarizes the sentiments of most of the participants regardin g the impact that not speaking English, or not speaking English well, had on their cancer treatment: If you do not know English, then yes, it makes a l ot of difference in the treatment. You do not know how to ask questions abo ut treatment. You do not know what is going on. Even though my English is no t greatest sometimes, I did not know what they meant. Even if you know the lang uage, if you do not know medical terms, then you do not understand. Even tho ugh you are educated, you do not understand. Add to that if you did not know the language. After every treatment, they say how do you feel, and it is hard to express yourself, especially when someone is interpreting. They are not feeling the pain and cannot express it in the same way. It is hard to translate, so I c an not imagine not knowing the language. That is a big gap. [Blanca, 46, from Ecuador, Stage II]
115 Sixty-four percent (18/28) of women received the ma jority of cancer and treatment information in English. However, 82% (23/28) prefer red the information in Spanish. Women who were noninsured or underinsured (11/28, 3 9%) encountered many difficulties navigating a seemingly disjointed heal th care system and had to go from hospital to clinic and back, piecing together the t reatment services they needed. As an example of the disjointed nature of the health care system, mammograms are done in one place; diagnostic tests (sonogram or biopsy) ma y be done in another. If the results indicate that cancer is present, then the patient n eeds to find an oncologist and a surgeon who will do the mastectomy or lumpectomy, w ho is different from the oncologist, then there is the chemotherapy, which is separate f rom radiation therapy. This list of medical professionals specializing in very specific cancer-related fields does not include mental health professionals or psychosocial counsel ors. If the patient is uninsured or, for whatever reason, is not able to be seen at a compre hensive cancer center, where all the professionals can be found in one location, the n obtaining treatment becomes much more daunting and difficult to navigate. Add not sp eaking the language (not being English proficient) to this picture, and the cancer care system becomes that much more intimidating. There are two cases that stand out as examples of the disparities some Latina immigrants encounter in accessing cancer care. One of the women interviewed was in the United States legally, from Cuba, and had just moved to the area, and the other was undocumented from Colombia and had lived in the Uni ted States for years. Both lacked health insurance, and neither spoke English. One is alive today and doing well; the other passed away a few months after our interview. Dafna is a 56 year old Cuban woman, diagnosed with Stage II breast cancer, who legally immigrated to the US. She recently moved to the area. She recalls her diagnosis and t reatment in the following excerpt:
116 I had a car accident and hit my breast in the acci dent My breast looked a little funny/ugly, and I told the doctor who was seeing me for the accident. He sent me to get a mammogram. I did not have health insurance but I paid for the mammogram that was $99. When I took the results back to him, he said he saw something he did not like. I asked him if it was cancer, but he said he could no t give me a diagnosis, just that it did not look right. He said I should do another mammogram and a sonogram. Again, I had no health insurance, but since it migh t be related to the accident the auto insurance covered the exam. There they diagnos ed me with cancer. The doctor told me he could not see me anymore because he was not an oncologist, and I had to find a surgeon and a hospital. It was like the sky closed in on me. I had just mov ed to the area and did not know anyone; I had no friends here. A lady I ran into ga ve me a little paper with your [the researchers] number on it. I called and expla ined my situation and you [the researcher] helped me a lot. I was connected to St. Josephs (sobbing) I am a little depressed because this has been hard for me; I have gone through some very difficult times. The biopsy they did came back positive. And then I asked how am I going to pay for it [treatment]? How will I do this or get that? ... Then, with the help of the nurse [a nurse at the community clinic] and someone else from the hospital between everyone they were able to help me find a p lace that would give me the treatment I needed. Thank God I have had my surgery I have an oncologist and a doctor. I am grateful to the free clinic; they ap proved my care. Thank you for going with me, also because of the language. Even t hough I have been here for a few years in this country, I could not study Engl ish well, and I cant get by on the English I know I started my first chemotherapy. I applied for Medi caid, and I was denied. I applied to the county insurance program, and they f inally approved me. I have the insurance for six months. A free clinic helped me. I feel like I am still going through this entire trauma. When I go to the doctor or to the hospital, I am terrified that they are going to deny my care. I pr ay they do not reject me, you know. Dafna was able to finish her chemotherapy treatment s. While she eventually received some assistance for the cancer treatments she still does not have health or dental insurance. Every six months she has to reapp ly and hope that she does not get denied. Dafna recently shared with me that she is d esperate looking for a dentist as her teeth have gotten loose, loose to the point that th ey affect her ability to chew and her gums bleed easily. These are all side effects relat ed to the chemotherapy. She can not
117 afford the dentist and fears she is going to loose all her teeth. Oral health care is usually not covered under the cancer treatment assistance p rograms. Agustina, a 54 year old single mother from Colombia had a similar experience, though her cancer was at an advanced stage [Stage I V] by the time she got the treatment she needed. I met her at a community heal th fair. At the time, she was given six months to live. I interviewed her two years lat er. Interestingly, she lived less than a mile from a comprehensive cancer center. Agustina h ad an amazing outlook on life and positive attitude. The following illustrates strugg le she went through to find the care she needed: Well, I did my mammogram, and they found some abno rmalities, and they sent me to do a sonogram and an MRI, but they were charg ing me $2500 for those tests. I called the cancer center, but they said th ey could not see me until I had a cancer diagnosis. I tried calling all these places, but no one could help me. Then the time passed, and it was about a year later when I fell on the stairs and got a bad back pain for like three months. My cousin took me to the hospital. They gave me some pills for the pain, and they gave me s ome pills for the kidneys; they thought it was my kidneys. Then another three months went by, and I still had a lot of pain, and my cousin took me to another hospital, and they were going to give me pain pills again, but my cousin talked to the doctor, and he came back to see me and did a more thorough exam and tests, and then he told her I had cancer. It had spread to my spine, skull and And she explained to him all that I had been through because I did not have insurance. They kept me at the hospital for a few weeks and di d more tests. The cancer was everywhere they said I had six months to live. I s tayed at the hospital for another two weeks; they put me in hospice. The pain s were terrible. I could hardly tolerate the pain. I had to wear a back brac e Well, it has been two years, and I am still here. I am fighting, and one day they are going to tell me you do not have cancer. I also observed that immigration status, beyond be ing undocumented, had an impact on access to cancer care. For example, Latin a immigrants diagnosed with breast cancer who are in the US legally and are in the pro cess of applying for residency or asylum are caught in the middle as they are neither undocumented or US citizens and
118 thus may not qualify for certain assistance program s. For example, Laila a 63 year old Colombian explained the difficulties she had obtain ing follow-up care after she finished her cancer treatment. Laila was in the process of a pplying for residency when she was diagnosed with breast cancer. Initially, she qualif ied for charity care at a local cancer center however; she had to reapply for the program every six months. The last time she went in for her follow-up appointment she was denie d and no longer qualified for charity care. Laila expressed her frustration and concern. She did not know how she would be able to purchase the medications she has to take on a daily basis for five years, which cost $400 for 60 pills or how she was going to affo rd the follow-up visits with an oncologists every six months that averaged $350 jus t to see the doctor and did not include any test that might be needed. She shared w ith me she was debating returning to Colombia to continue her follow-up care there. H owever, this would negatively affect her residency process and her husband and family wh o had immigrated to the United States with her. Cruz Maria, who was diagnosed with breast cancer i n 2008, had a similar experience. One of the social workers called me sev eral months ago asking if I could help her find a treatment facility for Cruz Maria. Cruz Maria was, in a sense, caught in the middle, while she was here legally, she did not have residency yet. She arrived from Cuba in 2007 and had only been in the US a few mont hs before she was diagnosed. While she received political asylum, she had to wai t a year to have the paperwork needed to qualify for assistance. After a couple mo nths and several phone calls she qualified for charity care at a local hospital. Cru z Maria, her son and daughter-in-law did not know where to go and neither of them spoke Engl ish. That in combination with being new to the area made it even more difficult to find resources. Dafnas, Lailas and Cruz
119 Marias story illustrate some of the political econ omic immigration related challenges Latina immigrants encounter accessing cancer care i n the United States. Social support from an emic perspective Freelist were used to elicit the different domains of social support and the types of assistance or support that someone who is sick m ight need (Table 4.3). Women were asked to List all the ways you should help someone who is sick or recovering from an illness Participants responses help gauge the typ es of assistance that was most important and were used to explore the construct of support from a different perspective. Women listed a total of 24 ways you should help som eone who is sick or recovering from an illness. Results are presented in the table below. Interestingly, the term support was mentioned 11 times, even though all t he things mentioned were types of support. A majority of them address instrumental/ta ngible needs. Table 4.3 Freelist Results ways to help someone who is sick/ill Items mentioned Frequency % Visit 13 46 Help with housework 13 46 Support 11 39 Take to the doctor 9 32 Emotional Support 9 32 Help run errands 8 29 Listen to them 7 25 Cook for them 6 21 Help them find information 5 18 Physical assistance 5 18 Economical assistance 5 18 Encourage them 4 14 Call them 4 14 Bring them flowers 3 11 Talk to them 3 11 Help with childcare 3 11 Pray for them 2 7 Interpret/Translate 2 7 Ask them what they need 2 7 Understand them 2 7 Help them find resources 2 7 Confianza 1 4
120 Women were also asked to list all the things you sh ould do to show someone who is sick that they are loved and cared for (Table 4.4). A to tal of 24 items were mentioned by participants. There was some overlap in their respo nses for this question and responses for the ways to help someone who is sick. Table 4.4 Freelist results: Things you should do to show someone you care Items mentioned Frequency % Give encouragement 13 46 Give affection 10 36 Listen to them 10 36 Cook for them 8 29 Go to the doctor with them 8 29 Be there 7 25 Visit them 6 21 Give support 5 18 Clean 5 18 Consentiendolo 5 18 Be patient 4 14 Precencia (being present) 4 14 Show concern through your actions 4 14 Call them 4 14 Economic assistance 3 11 Give them information 2 7 Show tenderness 2 7 Pray for them 2 7 Not give up on them 2 7 Attend to physical needs (e.g., bathing) 2 7 Take care of children 2 7 Understand them 2 7 Give advice 1 4 Translate for them 1 4 Open-ended responses reveal a majority of the wome n interviewed (20/28, 71%) described social support primarily as emotional sup port (e.g., listening (15/20), understanding (14/20), encouragement (12/20), visit ing (12/20), and bringing soup (10/20). They also described support as help with t hings around the house, such as housework (15/28), cooking (15/28), and finances (1 5/28, 54%). Some women also mentioned assistance with finding resources and inf ormation (7/28, 25%) as a type of
121 support. Prayer and having someone pray for them o r with them were also described as support (8/28, 29%). A few women (6/28, 21%) also d escribed support as being assistance with something that they need with out h aving to ask for it: compassion, being able to put yourself in someone elses shoes. Support is not waiting until they tell you they need something. Support is showing up with a soup, or whatever they like, if youre her friend you know what she likes, to visit [Mirta, 57, from Puerto Rico, Stage III]. I did not specifically ask women how their support needs were different now from when they were first diagnosed with breast cancer. However, from personal observations and from talking with women over time I have noticed that when women first learn about their breast cancer diagnosis the re is an increased need for emotional and moral support. The need for instrumental suppor t increases during treatment (surgery, chemotherapy, radiation), when women may have limited mobility, nausea, fatigue, aches and pains and thus not be able to pe rform their daily routine, maintain the home, work, drive etc. However, treatment side effe cts can last or emerge long after the actual treatment is complete, thus some women conti nue to need instrumental support. The concept of presencia, of being present or having someone in mind was also discussed as a type of support by 36% (10/28) of the women. Some of the other ways that women characterized support pertained to feeling secure (4/28, 14%) and being able to have confianza or trust in/with someone (5/28, 18%). Some women also said that the act of seeing other women like themse lves going through a similar experience was also a support and provided comfort. Having a positive attitude around someone who was ill was also seen as support (7/28, 25%).
122 Women define support differently, based on their p ersonal preferences and needs. The following quotes illustrate how various Latina breast cancer patients have defined support: Someone to listen to you. Especially in the beginn ing, you want someone to listen to you. You want to let go everything you ar e feeling, to listen that is what they did at the clinic. Someone that listens to wha t you say and someone that is helping me psychologically. [Maria, 40, from Colombia, Stage III] I think it is feeling secure. For me, support is a lot of things, but, most importantly, it is the security you feel around som eone else [Berta, 41, Mexico, Stage II]. Information about where one needs to go, where the y can go for help, what information they need to have, moral support, and t o be there physically close to the person, gives them company; tell them not to be afraid [Kati, 50, Ecuador, Stage II]. Being present in the persons difficult times, not just in the social but the physical, financial, emotional [Anita, 47, from Panama, Stage II]. When the women were asked to share who or what had been the most helpful and supportive through their cancer experience, the majority (26/28, 93%) mentioned their family. Husbands were mentioned by 58% (14/24 ) of the women. Some women had very supportive husbands while others did not. For example, Sara, who was diagnosed in 2006 with breast cancer, has, as she describes, a very supportive husband who cooked and cleaned the house with out her having to ask. They pray together and he accompanies her to most of her doctor appointments and the cancer survivorship activities she attends. Her husband is also Puerto Rican and is retired. On the other hand, Margarita, who was diagnosed in 2003 shared w ith me that her marriage fell a part and that her husband left her after she finished th e cancer treatment. Female family members (sisters, female cousins, mothers, mothersin-law and daughters) were each mentioned by 54% (14/26) of the women. A few partic ipants (3/26, 12%) mentioned their sons and nephews; other than that, no other male re latives were mentioned. Female
123 friends were also mentioned as being important sour ces of support by 12/28, 43% of the women. A few (6/28, 21%) of the women mentioned hea lth professionals (e.g., support group facilitators, social workers, nurses and thei r doctors) who gave them information and connected them to resources in the community (e .g., financial and medical), as being most helpful. People that provided transporta tion to doctor appointments also were mentioned. Maria, a 40 year old Colombian with Stag e III breast cancer, adequately summarized many of the sentiments expressed by the women interviewed regarding the importance of family and community support: Well, my family has been everything. We were hand in hand, my husband, my mom. She came from Colombia for five months to be w ith me. Really, my whole family. I miss them a lot. My whole family is in Co lombia. Flor [a social worker] has connected me with others it is like a chain of support A majority of the women (20/28, 71%) stated that s pirituality, or the belief in God, was central to their coping process. Women talked a bout God and the importance of God in their recovery. Forty-six (13/28) percent ta lked about the peace and comfort they got reading the Bible and books of religious psalms Women also talked about the importance of prayer, though not necessarily in a c hurch setting, and about having someone to pray with them or for them. This relates back to the concept of presencia mentioned previously; the women felt supported when someone had them present/in mind in their prayers. Though not all the women att ended church, those that mentioned they did (8/28, 29%) talked about the important rol e the church had in their recovery. Yamira, a 59 year old Cuban with Stage II breast ca ncer, describes how her faith has helped her cope with her illness: I believe a lot in God and in my Virgin, and I gre w up Catholic. I believe in God, but one day at home during one of the toughest time s during treatment I saw a commercial about a church called Para de sufrir (Stop Suffering), and they were announcing a healing service for those that had can cer and other diseases to go to a healing service.
124 I remember I still had the bandages from the mastec tomy. I felt so good; the church was full of people. There were people with c rutches. The pastor talked and they put their hands on the sick people and I g ot goose bumps, and I know something happened to me that day. That is the chur ch I go to now. I was Catholic, my family was catholic. I love the Virgen de la Caridad ; she is the patron of my country but that church gave me a lot of support with my illness. However, not everyone received the support they exp ected from the church or from their church family. One participant, Sara who was diagno sed with breast cancer in 2006, specifically mentioned how she had been let down by members of her congregation, who she expected would be more supportive than they were. She describes her experience with people from her church. First they told me, how sorry they felt and to let them now what I needed, but it was all de boca (just words) I told people at church right away when I was diagnosed. Some people close up, but I opened up. I thought that by telling them right away I was going to receive a lot of support from them but that was not the case. Since I do not have family here I thought the y were going to be my family. My husband has been alone through all this, he also needs tranquility and support. He did everything. I have two daughters bu t they both work and have a family and children of their own to take care of. N o one (from church) came and offered to help clean my house or cook for me, I di d not receive that type of support from them (church family), Weeks would pass and they did not even call then at church they see you and say oh, I love you and I would leave the service right after it was over because I did not want to o ffend anyone, I did tell two or three people, if you love me so much why do not you at least call Several of the women (4/28, 14%) indicated that th ey felt closer to God after the illness and mentioned the importance of Gods uncon ditional love and support, especially when they felt alone. Anita, a 47 year o ld Panamanian with Stage II breast cancer, identified her relationship with God as a s ustaining force during her illness: Knowing that I was in Gods care, and he was in ch arge of everything gave me hope, gave me hope not to quit and not to despair. It is spiritual support; that is the most important thing for me when I am alone an d depressed and crazy thoughts come to my head, I start to pray, talk to God, read the Word. When I am done, I have more hope and a little more peace.
125 Finding the good in the bad, in the pain and in the ugly Women described their cancer experience in a myria d of ways; however, their descriptions can be divided into two general catego ries: the positive and the negative side of cancer. Interestingly, almost 40% (11/28) s aw their overall cancer experience as positive. Participants also mentioned the role canc er had in reaffirming of their beliefs and in establishing a connection with God/spiritual ity (20/28, 81%), having a new outlook on life (20/28, 71%), receiving support from family (20/28, 71%), going to support groups and meeting new people and/or other women like them selves (13/28, 46%). As one woman shared, cancer changed her outlook on her lif e and the world around her: It [cancer] changed my values and outlook. I appre ciate things much more now; it showed me the value of other people, not materia ls things but I want to help others. I talk about my illness, if it is going to help others. I got closer to my family. I value things more than before; you live d ay to day I do not remember the day I was diagnosed. I left it behind me. You g o through things for a reason. [Luli, 37, from Colombia, Stage III]. Similarly, Isis, a 44 year old Venezuelan woman wit h Stage I breast cancer, discussed meeting other women with cancer and the influence t hat had on her outlook: I met other people with cancer. I met people youn ger than me that had cancer, and I saw that life goes on. I am taking better car e of me now. I think being stressed can make your body more susceptible to dis eases like cancer. I met new people that want to help and that together we c an overcome things Raquel, a 47 year old Puerto Rican woman, identifie d her renewed interest in social interaction as a positive outcome of her can cer diagnosis: I saw how important I was to other people; people asked me how I was. I value life more. I was in touch with the world mor e. Before, it was just work, work, work; now I am more social. I talk to people now, tell them to care for themselves, to give people advice. Participants were also asked to describe the ways cancer had changed their life. The positive responses were similar to the ones rep orted above. The positive changes women most frequently mentioned were taking better care of themselves (e.g., by eating better and putting themselves first) (15/28, 54%) and spending more time with
126 their families and the family closeness that result ed (8/28, 29%). Participants (8/28, 29%) also mentioned that cancer made them revaluate their priorities and that they made a conscious effort not to allow themselves to be affected by stress: before I would worry about the things in the hou se, that it was clean, that dinner was ready, and now I worry more about me. If I cannot clean the floor today, I will clean it tomorrow. This was hard for me, because I would always do everything, but now I say that stuff is not that im portant [Luli, 37, from Colombia, Stage III] Kati, a 50 year old Ecuadorian with Stage II breast cancer, feels that cancer made her conscious of her own well-being: I try to take better care of myself now, what I e at. I keep thinking I am alone and need to take care of myself. Before, I would worry more about my family, and now I see I need to take care of me. I need to stic k it in my head that I am alone, but I am not abandoned because of my illness. My so n will get married any day [in Ecuador], and I do not want to be a burden for anyone. Stress and cancer The most common term used by the women interviewed to describe stress was estar preocupada (being worried or worrying all t he time); they also described feeling a loss of control. Stress was also described as presin (pressure) o estar presionada (being pressured). One woman described stress in th e following manner: It is anguish, desperation, anxiety. Not knowing w hich ways to go, what to do. You feel corralled. For me, it is like a person be ing corralled; they feel pressure around them, because they are like in a pressure co oker. You do not know how to get out of it; you cant find the means to do so That is what stress is to me. It is anguish, desperation. It is everything that caus es emotional unbalance. [Mariana, 48, from Puerto Rico, Stage IV] The stress, problems and duress women described th rough out the interview can be grouped into three categories: 1) social (e.g., familial), 2) structural and socioeconomic, and 3) disease related, which can be sub divided into physical (e.g., bodily) and psychosocial. Many of the sources of stress ide ntified by the women overlap and act synergistically and are not mutually exclusive (See table 4.5). When asked to list all the
127 factors that can cause cancer, the women interviewe d listed a total of 23 causal factors. Stress was second on the list. Table 4.5: Freelist result: cancer causality Items mentioned Frequency % Poor nutrition 18 67 Stress 15 56 Heredity 12 44 Smoking 8 30 Pollution 6 22 Environment where you live 6 22 Chemicals in food 5 19 No exercising 5 19 Sadness 3 11 Alcohol 3 11 Sun 3 11 Family problems 3 11 Getting hit 2 7 Disorderly lifestyle 2 7 Plastics 2 7 Toothpaste 1 4 Microwave 1 4 Being too strict with self 1 4 Punishment 1 4 Hormones 1 4 Medications 1 4 The effects of stress on family, work and their ow n health were discussed through out the interviews. One woman identified st ress as a reason she had to stop working: the stress did not let work... I worked i n a school kitchen; it is so stressful there, and I could just not be that stressed. And, you know, I think it was the stress that caused my cancer, but palante (keep moving forward). [Raquel, 47, from Puerto R ico, Stage unknown]. Social/familial stressors Even though family was seen as a source of support, it was also listed as a source of stress (15/28, 54%). Participants talked about strained relationships with their sons and/or daughters (6/28, 21%), and about not ha ving the level of support that they
128 expected from family and friends (3/28, 11%). Other family-related sources of stress and duress were also discussed, including being far awa y from their family who had remained in their native country (5/28, 18%), havin g to keep a strong/happy face to avoid burdening their family (14/28, 50%), and worr ying over what would happen to their family/children if something happened to them (15/2 8, 54%). Others (2/28, 7%) shared that, while having family come and visit them from their native country was comforting, it was also a sort of stress, because they felt as if they had to attend to their guests and be a good host, even though they were sick. Anita, a 47 year old Panamanian with Stage II breas t cancer, illustrates the frustration that some patients feel about not receiving the sup port they need: I am alone; I have fought this alone. My son does not give me support. My daughter does not give me support, because she is d isabled. I have not received any support from friends here. For me its been (s igh) I feel full of sadness. In these times of need, I have not had the physical support or emotional support from my friends From my family, but they are far a way [in Panama]. You know, sometimes you need help, and you do not have it. I am like Wow, I am learning to survive and not fall. I do not have the luxury to just lay there this has caused me a lot of stress. Blanca, a 46 year old Ecuadorian with Stage II brea st cancer, describes the difficulty of being separated from family in their native country during her illness: Family cried. The hardest part was for us not to be together. Emotion ally, by phone [family lives in Ecuador], they gave a lot of support. I talked more to my sister than my brother; it is a guy thing or they are not into the calling thing Women were also faced with dealing with their illn ess, while trying not to burden their families: I went to try and get financial assistance, and they denied me. I did not want my family [both her adult sons have young chil dren] who has children to help me. I did not want to burden them. [Yamira, 59, from Cub a, Stage II] Similarly, Reina, a 35 year old Peruvian with Stag e III breast cancer, was conscious about not burdening her family with her i llness: My family is in Peru, but I did
129 not want them to suffer. We talked everyday, and I would just tell them everything was fine. Women delineated how stressful and different it wa s to be ill in the US compared to being ill in their native country (13/28, 26%). Further, participants went on to decribe (10/13, 77%) how immigrating to the US ruptured soc ial ties and support networks that would traditionally provide support in a time of ne ed. Luli, age 37, from Colombia, observe: When you are far away from your country it is hard if you were diagnosed and were in your country you have more help, if you are far away you have that many more obligations and more stress you have obligati ons to your family there and obligations here. If I was in my country and I need ed something from the store I could call my mom, my sister, I could tell them I n eed this Here it does not matter how close I feel to someone, it is not the s ame you are not with your own. However, not all participants perceived being far a way from family in their native country as stressful for they felt they received the suppor t they needed from them regardless of the distance. Melania, who is from Colombia states: You need to look for support from other members of your family. You know, it did not cause me that much stress not having my fam ily here They called and were present through the phone and through their pr ayers. [Melania, Colombia, Stage I] The participants were asked if there was someone t hey wish they could have leaned on for support but could not, for whatever r eason. Participants specifically mentioned their mothers (9/28, 32%) or family back in their native country (10/28, 36%). Ten percent mentioned their husband or partners, wh o traveled frequently for work or did not live in Florida. When asked who she would like to be able to lean on for support, one participant said, my family and my mom who are in NJ and Puerto Rico. My friend too, if she had been here [lives in Puerto Rico]. S he would have taken me out and made me laugh. My emotional situation would have been a lot better [Sara, 55, from Puerto Rico, Stage II].
130 Structural and socioeconomic stressors The socioeconomic stressors and problems women men tioned were primarily financial (i.e., paying bills, medicine and medical bills) (15/28, 54%) and insurancerelated (6/18, 33%), as well as the increased econo mic burden on their family and household because of the financial and insurance is sues directly related to cancer care (10/28, 36%). Maria, a 40 year old Colombian with S tage III breast cancer, reflected on the economic burden of cancer: Economically, the first three chemos we had to pay out of pocket; we do not have insurance. Then we had to run and try to find assistance, someone to help us. We do not like to ask the government for help, but we had to. I got community care, but that is stressing me out a lot. I still h ave to pay for the chemo and now more and more bills have started coming in The eco nomic part is super stressful In the five years I have been here, I ha ve never worried like this about our finances. Yamira, a 59 year old Cuban with Stage II breast ca ncer, also suffered the economic toll of a cancer diagnosis: it was two years of trea tment. It affected my home; I lost my house, spent all our savings during the two years o f treatment. We filed for bankruptcy. It affected us financially; we lost the car. It was a process, but I am alive. The costs of treatment, and the effect on the family, are a prim ary concern for many women (15/28, 54%): What worries me the most is our finances. H ow am I going to provide for my family? [Mariana, 48, from Puerto Rico, Stage IV]. With regard to employment, 33% (5/15) said their s upervisor and co-workers had, for the most part, been understanding and supp ortive. However, several women (6/15, 40%), who primarily worked in service level jobs (e.g., restaurant, cleaning, factory), said working was difficult at times, and they would have preferred not to work during treatment but that they had to, to sustain t hemselves and/or family. Fifty percent (14/28) said they worked during thei r treatment, and 43% (6/14) said they had to quit their job during treatment. S uch was the case with Gloria, who was
131 diagnosed with breast cancer in 2007. She worked at a glass-making factory and lived in an unsafe area and mobile home park. Gloria spoke s ome English and had emigrated from Panama. She had a double mastectomy and was pr escribed chemotherapy; her treatment regimen would have lasted several months. Her job provided insurance, but if she did not work she would not only lose her insura nce but have no money to pay for bills and medications. She experienced severe side effects from the chemotherapy (e.g., nausea, fatigue) for days on end and still had to w ork. Her job required her to lift and break heavy sheets of glass. I remember she showed me how she would put tube socks beneath the rubber gloves she used that went up to her arm pits to protect her arms from accidental cuts. She was putting herself at ri sk for infection and lymphedema but felt she had no choice. She ended up losing her job because her productivity fell, and she had missed too many days. Gloria mentioned that she was going to stop the chemotherapy because she felt cured and she had rea d somewhere that it would do more harm than good. She later revealed to me that the truth was that the doctor told her could not treat her if she did not pay, so she stop ped the treatment. I did not get to interview her for this project, for she moved out o f state before I had the opportunity. I know her story well and it illustrates the plight o f many hard-working Latina immigrants who endure the burden of cancer under unbearable ci rcumstances. She was not noncompliant with her treatment; she simply felt she had no choice. The psychosocial impact of cancer The following disease-related stresses and concern s emerged from the interviews. They can be subdivided into two broad c ategories: physical, which includes physical changes (e.g., appearance, side-effects, p hysical limitations), and psychosocial, which include emotional changes, changes in sexuali ty/intimacy, and changes in perceived femininity. The physical and the psychoso cial are interrelated. For example,
132 changes in appearance might affect womens sexual/i ntimate relationship with their spouses. Several participants (10/28, 36%) talked about the stress and pain they endured managing the side effects of treatment. Side effect s like nausea, fatigue, hair loss and worry about what other organs the chemotherapy woul d affect were mentioned: I said whatever I have to go through, I will do wh atever I can to stay alive. We have the idea that you go to the doctor, you take a medicine and get better. With cancer, it is not like that. Sometimes, with cancer you feel great, and then you get the treatment, and the treatment makes you feel sick. It is the opposite then I was worried about how the treatment would af fect me, like the skinny people who look like walking dead people. I was afr aid of the sores in the mouth, too. [Leonor, 39, from Puerto Rico, Stage III] Participants (12/28, 43%) also discussed the physi cal limitations brought on by cancer (e.g., not being able to move or pick up hea vy things and limited mobility on the treatment side of the body, either due to scaring o r lymph node removal). Women (10/12, 83%) talked about how this affected their a bility to complete tasks around the house or at work (e.g., clean). Fourteen percent (4 /28) also mentioned being less active after their treatment and dancing less. Nena, a 42 year old Puerto Rican with Stage III breast cancer, reflected on the changes she has end ured since her treatment: Well, before I was happier, more active. Now, I get depre ssed a lot and am less active. That side of the body is not the same. I can not do the same things any more, and it is not as strong as before. The breast is a symbol of womanhood and motherhood; too many of the women (9/16, 56%), the removal of the breast was very tra umatic and deeply affected them. Only 38% (6/16) had breast reconstruction at the ti me of the interview. Isis, a 44 year old Venezuelan with Stage I breast cancer, discusse d her feelings and concerns regarding breast reconstruction:
133 I was worried about how my breast was going to loo k. They did a lumpectomy; I have scar. I need to ask the doctor if I can do rec onstruction. I have un undido (spot that is sunken in). I have not asked the doct or. I think what if because I am being vain because I am vain they do a surgery that moves stuff around and spreads the cancer, if it is there... I am unsure; I have those doubts. One woman describes why she wants to get reconstruc tion, even though she is over 50. Her response illustrates the importance of the brea st as part of a womans feminine identity: I look in the mirror, and I do not see a feminine woman. I may be over 50, but I am still a woman. They [church friends] have told m e, Why do you need those breasts anymore?, but, as a Christian, I have to s hut my mouth. I just do not feel sexy. To leave the house, I put on my wig, my prost hesis, and, when I get back home, I start removing all the stuff that is fake [ wig, prosthesis], one by one All that makes me a woman comes off, and then I feel li ke I am no longer a woman. [Sara, 55, from Puerto Rico, Stage II] Women also talked about how the scars and removal o f the breast affected how they dressed (4/28, 14%) and their overall appearance: I used to love to tan. I would be in my bikini and lay out all day, and I would walk on the beach in my bikini well I did have to chang e what I wore that changed a lot, and that has been hard. I was very coquetica (sexy) with my husband. I would wear sexy pajamas with thin should er strips and stuff, but now I feel like a little grandma with the ones I use now cover my whole body. My body has changed. [Maria, 40, from Colombia, Stage III,] Similarly, another participant relates her diminish ed sense of femeninity and sexuality, as a result of her surgery: Look, I thank God I was widowed. I do not know how I would have reacted if I had a husband. In my culture, breasts are important You dress nice to accentuate them. I am glad that I do not need to wo rry about sex. Before I had the prosthesis, people would stare at my chest. I w as embarrassed to go out. I felt like I lost something. If you can go to heaven without an eye, you can go to heaven without two breasts. [Mirta, 57, from Puerto Rico, Stage III] Participants shared how breast cancer affected thei r femininity and self esteem (15/28, 54%) and diminished their sex drive/libido (10/28, 36%). It has affected me a lot as a woman. It has dimini shed my sex drive immensely When you are in the moment, and then you look down and then
134 there is a part of your womanness missing . I have talked with other women who have gone through this. They all say the same t hing . It is not like before I did not tell this to anyone, just to other women who have gone through it like me, not even my husband. I have not told him how I feel. It has affected my relationship with him when it is time to do it, I think we, as women, can handle the situation. We know what to do to make him feel good (laughs a little) and not let them know we have no desire. This is an area th at we need a lot of information about; we need more education. This is not something that is discussed openly, for it affects all of us that hav e gone through cancer. It is a taboo, maybe, where we do not talk about it openly. [Yamira, 59, from Cuba, Stage II, 2002] Weight gain (5/28, 18%) and hair loss (6/28, 21%) w ere also mentioned as factors that negatively impacted the participants self-esteem. The women interviewed talked about feeling less sexy and less attractive after their t reatment: For example, one participant said, It has affected me so much, especially becau se I am the mom and the dad here, and I feel like I have failed my family. As a woman I do not feel feminine. I feel fat and ugly... Emotionally, it has affected me a lot, too [Anita, 47, from Panama, Stage II]. Regardless whether women had a lumpectomy or maste ctomy, the procedure still had an impact on how women saw themselves. Le onor, a 39 year old Puerto Rican with Stage III breast cancer, reflected on the impa ct that her lumpectomy had on her psyche: Even though it has been three years, I am embarras sed in front of my husband. I have scars and discoloring of the skin that is a lways on the back of your mind. He says he loves me just like that, but, as a woman, your body is everything and I only did a lumpectomy; it is a sm all scar. It is in my sub conscious Thirty-seven percent of the women interviewed repo rted negative changes in their spousal relationship (7/19). For example, som e women talked about how supportive their husbands had been during the treat ment but noted that, afterwards, their husbands expected things to go back to normal, yet the women did not feel normal, because they felt that they were not the same emoti onally and physically: It affects the spousal relationship. My husband so metimes comes to me and says Cant we do it? Cant we do it? And I tell h im I am sick, even though I am
135 not dying. Sometimes I think, Does he pity me? So metimes I tell him I can... I would feel bad when I had to get undressed in front of him. I would cover myself and hold back a little, and our intimate relationsh ip has changed; you lose all your desire. An even now, after the treatment is ov er, it continues to be this way. Sometimes men are not too patient about that kind o f thing. [Nena, 42, from Puerto Rico, Stage III] The women who had strong spousal support seemed le ss affected and did not report feeling a loss of their womanhood because of the treatment. Some participants (8/28, 29%) also discussed the hormonal changes the y experienced, including the early onset of menopause caused by some of the treatments and how this might affect their fertility and ability to have children in the futur e. Some women (15/28, 54%) also discussed the emotional changes that they experienc ed, due to cancer treatment. For example, 28% (8/28) reported being more sensitive a nd feeling depressed. Some (3/28, 11%) felt they worried more and feared having a rec urrence. Information needs and provider communication Towards the beginning of the interview, the partic ipants were asked to freelist the kinds of information that they felt were most impor tant to someone diagnosed with breast cancer. A total of 18 items were listed (See Table 4.6, next page). The two items most frequently listed were information about the diseas e (e.g., cancer type, stage) and treatment options). During the interviews, a topic that came up severa l times was the lack of information available and the difficulty Latina wom en encountered in getting information about their disease, treatment options, and availab le resources. The women also discussed the lack of information available to help them cope with the negative psychosocial aspects cancer and its treatment, such as the lack of counseling and mental services readily available.
136 Table 4.6 Freelist Result: Things someone with brea st cancer should know Items mentioned Frequency % About disease 22 81 Treatment 15 56 Side effects of treatment 8 30 How to take care of self 6 22 The assistance that is available 6 22 Their options 5 19 Survival/If there is hope 5 19 How to get family support 3 11 What to eat 2 7 When to get mammograms 2 7 What exercises to do 2 7 How to change lifestyle 2 7 Not to be afraid 1 4 That they are not alone 1 4 Know their limits 1 4 To be honest with their partner 1 4 To reduce stress 1 4 Not all women are the same 1 4 Throughout this research, it has been noted that women say that they did not ask their doctor questions because they did not wan t to question his/her authority or they did not want to bother the doctor when he/she had a lready done so much for them. Women in the study have shared that they did not ev en know what to ask. Many doctors offices do post some literature in the waiting area s, but it is not always readily available or in Spanish. Some participants (11/28, 39%) share d that some of their doctors gave them brochures and information; some even drew pict ures of what was happening to them. However, not all received the same breadth an d depth of information from their doctor. One woman discussed her lack of knowledge and info rmation about treatment options and her lack of information about the test they had done. Her frustration becomes evident throughout the excerpt: I saw someone who had chemo, who did not have a po rt scar on her chest. She said, They gave me chemo through my vein. And she said the doctor gave her
137 the option to put it through the vein or chest, but I did not know. They said go this day, and I did, and I did not know I had options. N ow I do not wear shirts that show the top of my chest, because I have a big scar They have had to open it [scar] like three times; they had to put the port i n 3 times. They did not give me the option. She goes on to say: I did not know how many nodules they had taken out or what kind of chemo I got or the name of the cancer I had or what stage. And, after meeting some ladies, I went back to the doctor. I asked him to write every thing down for me. I did not know why they did not give me the pill you take for 5 years, and later I found out it was because all my lymph nodes came back negativ e. All I knew was that I had breast cancer, which I had radiation and chemo, but that is it. I did not know anything. I think you need to inform yourself. Know what kinds of medicines are available. My health insurance is the Hillsborough County health care plan. I asked my doctor if he knew a doctor that spoke Span ish, and he said one of the nurses did but she was not always there I did not k now who to ask or who I could ask. [Nena, 42, from Puerto Rico, Stage III] Another participant also noted the lack of informat ion available to Latina women seeking cancer treatment: Ill tell you why I know this, because a lot of La tinos are not very well-educated They are not educated about chemotherapy. What are the side effects? What can I do? Why the doctor chose a certain kind of, u m, the amount of chemo, um, how a tumor works You know, educate us about it, y ou know. Educate us about the different kinds of chemo. What are their side effects? What can I do? Educate us about the different kinds of cancer, why a doctor chose this type of chemo for you, the amount of chemotherapy you shoul d go through. [Elizabeth, 67, from Puerto Rico, Stage I] When women were asked where they got the majority of their cancer information, the majority (20/28, 71%) indicated that they obtai ned information from their doctors office and/or from a social worker at the hospital: The doctor gave me a book and highlighted pages ab out my treatment. I went to library and got books about cancer. When I went to the doctor, I wrote all the questions we had. I told the doctor I wanted them t o just cut them off, but first they wanted to give me treatment, and I said, Why, if I am going to cut them both off? And she said, Because the cancer is big, and we do not want it to spread. She gave me a good reason why they did treatment, t hen surgery. [Blanca, 46, from Ecuador, Stage II]
138 Several (7/28, 25%) women said they did not know w here to go or who they could call. A few (4/28, 14%) got the most useful i nformation from other cancer survivors, who referred them to the American Cancer Society and to local support groups. A couple participants (2,28, 7%) had older daughters that looked up information for them. Some (4/28, 14%), however, reported not getting enough information from their doctors. Anita, a 47 year old Panamanian with Stage II breast cancer, recalled how she obtained information regarding her cancer treat ment: When I went to the oncology office, I met a woman who had gone through this, an d she gave me information. My doctors just skimmed over information; they did not explain things thoroughly Even though there are organizations that support c ancer patients and their friends and families and many websites about cancer (e.g., American Cancer Society, Susan G. Komen for the Cure and the National Cancer Institute), information and literature is not always easily accessible or avail able to the community: I got everything from the library. I did not know about the American Cancer Society. I learned about it at the end of my treatment [Blanca, 46, from Ecuador, Stage II, 2005]. More recently many of the organizations mentioned above have translate d their online literature to Spanish; however, Internet access is required to access the information. A few women (4/28, 14%) also mentioned said that t here should be a centralized source of information and/or a person that could he lp them navigate the maze of cancer care and explain the various treatments. For exampl e Leslie, from Argentina relates: I do not know if I am selfish or what, but I would call places, and they would refer me to more places. I ask myself, Why cant there b e a person to help me, like a nurse or something? For me, if there was are repres entative that I could call and then we can both try and get information, we ca n work together. You may get some information, and you call but then you get referred to more places, and it gets to a point that you burn out. Someone that is there to help you, then you could probably get more. [Leslie, 52, from Argentina, Stage III]
139 In addition to a lack of accessible information ab out cancer treatment, participants felt that there was also a lack of inf ormation regarding nutrition (10/28, 36%) and sexuality and intimacy (7/28, 25%). The women a lso cited a need for information and support for the families and spouses of cancer patients (7/25, 25%), in order to help them understand the changes (physically, mentally a nd emotionally) that the patients are going through: Everyone worries about the patient but no one thinks of the family member who suffers just as much. That is an area wh ere we have a need. They have to deal with the change in character. Support groups a re good for that. [Luli, 37, from Colombia, Stage III] A few participants (5/28, 18%) also discussed the lack of counseling and mental health services available to Latinas that could hel p them cope and work through some of the these issues, especially those related to sexua lity and intimacy and how to communicate with family: The relationship with my husband changed 100%, bec ause they never think about what you feel when you have that treatment, you do not feel like doing that [intercourse]. It is not because you do not lo ve them, it is because you cant; you do not have the desire. I totally lost my sexua l desire. He would come to me, and I could not. You are dry, and then they get mad and think you do not love them. There is little information about this side e ffect of cancer treatment, and it causes a lot of problems... From the day you are di agnosed, they should have something, a counselor for that they should at leas t give you a book on it. [Margarita, 54, from Colombia, Stage III] In summary, this section provides a vivid snapshot of the lived experience of Latinas diagnosed with breast cancer. Findings bri ng to light the need for information and the struggles women have endured accessing care and or at home in their personal and familial relationships. Further, information co llected through the in-depth interviews was used to inform the questions used in the struct ured questionnaire. For example, the stressors mentioned by participants informed the it ems that were included in the chronic stress scale. Data from the structured questionnair e are presented in the next section.
140 Section 3: Structured interview results: Cultural a nd structural factors that influence social support This section includes the results from the structu red questionnaire, administered in Phase II, and results focus on the cultural and structural factors associated with social support. A total of 60 Latinas participated in thes e interviews. Participant Demographics (N=60) Participants represented 10 Latin American countri es (Figure 4.2.). The largest group of participants was Puerto Rican (33.3%), fol lowed by Colombian (16.7%), Cuban (11.7%), Mexican (8.3%), Dominican (8.3%), Ecuadori an (6.7%), Peruvian (6.7%), Venezuelan (3.3%), Honduran (3.3) and Guatemalan (1 .7%). Figure 4.2. Ethnicity of Structured Interview Parti cipants N=60 Ethnicity of participants n=60Columbia 17% Guatemala 2% Cuba 12% Honduras 3% Dominican Republic 8% Ecuador 7% Mexico 8% Peru 7% Puerto Rico 33% Venezuela 3% Table 4.7 (next page) provides a brief snap shot pa rticipant demographics. A summary table of all participant demographics is included i n Appendix G.
141 Table 4.7. Structured Interview Participant Demogra phics (N=60) Age Percent Under 50 45.0 50 and older 55.0 Year Diagnosed 2003 11.7 2004 15.0 2005 6.7 2006 28.3 2007 30.0 2008 8.3 Stage at Diagnosis I 33.3 II 25.0 III 21.7 IV 1.7 Do not know 18.3 Treatment Lumpectomy 28.3 Mastectomy 70.1 Other 1.7 Received Chemotherapy 75.0 Received Radiation 61.7 Take Treatment Related Medications 55.9 Had Reconstruction 26.7 Got a Second Opinion 18.3 Had access to a therapist or mental health professi onal 53.0 Currently has Insurance 80.0 The age range of study participants was 30 to 85 y ears of age, with 45% of the women being under 50 years of age. The women interv iewed were diagnosed with breast cancer between 2003-2008, with 58.3% diagnos ed in 2006 and 2007. Stage of cancer at diagnosis varied, with 33.3% of women bei ng diagnosed with Stage I, 25% with Stage II, 21.7% at Stage III, and 1.7% at Stag e IV, while 18.3% did not know what stage they were in when diagnosed. Seventy percent of the women had a mastectomy, and 75% received chemotherapy as a treatment modali ty. Just over a quarter of the women (26.7%) had undergone breast reconstruction a t the time of the interview. Eighty percent of the women interviewed stated that they c urrently had insurance. However,
142 this includes a number of women that were under cha rity care at local hospitals and cancer centers. They considered charity care a form of insurance. Forty-seven percent stated that they did not have access to a therapist or mental health professional, if they needed it. Fifty percent of the participants report ed that they had not attended a cancer support group. The next several pages detail the findings from th e structured questionnaire. For the statistical tests, I looked for levels of assoc iation or significant differences at the .05 level. Age and ethnicity and social support Before presenting the results that address the pro posed hypothesis, I investigated the relationship between the demograph ic factors of interest: age, ethnicity, as well as marital status and overall social suppor t. A correlation analysis (Spearmans rho) between ag e and overall social support r= -.192(58), p >.05 was performed to see if there wa s a correlation between age and overall social support. The relationship was no t significant. A Mann Whitney Test was used to compare overall so cial support between women who were less than 50 years of age and women who were over 50 years of age. There was no significant difference z=-1.43 6, p >.05. A Kruskal-Wallis analysis to see if there was a di fference in overall social support among women from different ethnic groups (Colombia, Cuba, Dominican Republic, Mexico, and Puerto Rico) was performed. R esults show there was no significant difference X2=4.294 (4, N=47), p >.05. I selected the ethnic groups where I had five or more cases. Income, length of time in the US, and English profi ciency are explored in more detail in the following paragraphs, as they are directly rela ted to the proposed hypothesis.
143 Cultural Beliefs, Norms and Expectations about Gend er Roles and Social Support (Hypothesis 1) The next few paragraphs describe results related t o Hypothesis H1, H.1.a, H.1, b., H.1.c. H1. Cultural expectations about gender roles will i nfluence social support Each the participant was asked if she had that par ticular type of support. If she responded yes, that she had that type of support, she was then asked to list up to three people that could provided said support, if she nee ded it. Table 2 illustrates the proportion of men vs. women listed as sources of su pport by the participants. Figures 4.3.a, 4.3.b., and 4.3.c. illustrate the pe rcentages listed in Table 4.8, broken down by support category (e.g., emotional, t angible, etc.) It also indicates the percentage that did not have that type of support. This table and figures show that a higher proportion of emotional supports were provid ed by women compared to men. For example, 50% (n=29) of participants listed only wom en as someone who understands their problems compared to the 8.3% (n=5) who liste d only men. Similar trends can be seen for the other types of emotional support, such as someone to visit you if you were not feeling well with 55% (n=33) stating they recei ved support from only women and 8.3% (n=5) from only men. Interestingly, a slightly higher proportion of men provide support items included under tangible support compa red to the proportion of men who provide support items listed under emotional suppor t. For example, 46.7% (n=28) of participants listed only men as someone who went to the pharmacy to get prescriptions compared to the 25% (n=15) of participants who list ed only women. A similar trend is seen in support from someone to help with household bills, where again we see a higher proportion of support being provided by men. In gen eral, it was surprising to see the percentage of women who reported not having certain kings of support.
144 Table 4.8. Social Support from Men vs. Women Have support from Do you have the following kinds of support available if you need it No support % Men only % Women only % Both men/ women % Someone who listens to you when you need to talk N=60 28.3 5.0 41.7 25.0 Someone to confide in or talk to about your problems N=59 25.0 5.0 46.7 25.0 Someone who is patient with you N=59 21.7 21.7 33.3 23.3 Someone who encourages you N=60 8.3 13.3 48.3 30.0 Someone who understands your problems N=59 26.7 8.3 50.0 15.0 Someone who shows you love and affection N=60 15.0 11.7 28.3 45.0 Someone to do something enjoyable with N=59 30.0 18.3 26.7 25.0 Someone to visit you at home or in the hospital, if you were not feeling well N=60 10.0 8.3 55.0 26.7 Someone to look over your pets, if you were if you were hospitalized N=40 60.0 20.0 11.7 8.3 Someone to help you, if you were confined to bed N=60 13.3 10.0 50.0 26.7 Someone to drive you to the doctor N=59 25.0 26.7 33.3 15.0 Someone to go to the pharmacy and get your medications/prescriptions N=59 18.3 46.7 25.0 10.0 Someone to help you with your household bills N=58 30.0 51.7 13.3 5.0 Someone to help you cook, if you were unable to cook N=60 15.0 16.7 61.7 6.7 Someone to help with daily chores, if you were not feeling well N=60 18.3 16.7 53.3 11.7 Someone to help you with childcare, if you were not feeling well N=26 81.7 5.0 10.0 3.3 Someone to bring you soup/food, if you were not feeling well N=60 13.3 3.3 70.0 13.3 Someone to help you fill out medical-related paperwork N=52 50.0 10.0 35.0 5.0 Someone to help you figure out insurance issues N=50 68.3 8.3 21.7 1.7 Someone to help you find resources N=54 71.7 1.7 20.0 6.7 Someone to interpret / translate for you N=49 48.3 6.7 38.3 6.7 ..
145 For example, 28.3 (n=17) reported not having someon e who listened to them when they needed to talk. Similarly, 26.7% reported not having someone to understand their problems. Seventy-one percent (n=38) report n ot having someone to help them find resources. And 81% (n=21) of women with children re port not having someone to help with childcare. H1.a. Compared to women, a higher proportion of men will likely provide instrumental/ tangible support, and a higher proportion of women will likely provide emotional support, compared to men. The largest percentage of men were reported as off ering assistance by driving to the doctor (26.7%), going to the pharmacy to get me dications (46.7%), and paying household bills (51.7%). On the other hand, a highe r percentage of women were reported as offering assistance by cooking (61.7%), helping with household chores (53.3%), and understanding the patients problems ( 50%).
146 Emotional Support0 10 20 30 40 50 60Someone who listens to you when you need to talk Someone to confide in or talk to about your problems Someone who is patient with you Someone who encourages you Someone who understands your problems Someone who shows you love and affection Someone to do something enjoyable with Someone to visit you at home or in the hospital if you were not feeling well None Men Women Both men and women Figure 4.3.a. Emotional Support from Men vs. Women
147 Instrumental/Tangible Support0 10 20 30 40 50 60 70 80 90Someone to look over your pets if you were if you were hospitalizedSomeone to help you if you were confined to bed Someone to drive you to the doctor Someone to go to the pharmacy and get your medications/prescription s Someone to help you with your household bills Someone to help you cook if you were unable to cook Someone to help with daily chores if you were not feeling well Someone to help you with childcare if you were not feeling well Someone to bring you soup/food if you were not feeling well None Men Women Both men and women Figure 4 3 .b Instrumental /Tangible Support from Men vs. Women
148 Figure 4.4. Marital Status and Support from Men Informational Support0 10 20 30 40 50 60 70 80Someone to help you fill out medical-related paperwork Someone to help you figure out insurance issues Someone to help you find resources Someone to interpret / translate for you None Men Women Both men and women Figure 4.3.c Informational Support from Men vs. Wom en
149 Martial Status and Support from Men 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Not MarriedMarried Not Fulfilled Only Women Only Men Both Thus, findings support hypothesis H.1.a. Data from the structured questionnaires illustrate a similar trend regarding who provides s upport or assistance, if needed, by gender. The findings show that men were more likely to provide support by addressing necessities outside the home, like going to the pha rmacy, driving to the doctor, and paying bills. Women were more likely provide emotio nal support, such as listening, talking, encouraging, understanding, and visiting. However, a large percentage of the participants listed both men and women for love and affection. Regarding informational support, women seemed to encounter logistical barri ers, saying they did not have someone to help them with paperwork, insurance issu es, community resources and interpretation/translation. Among those that did ha ve someone to help with informational support, a larger percentage listed women as provid ers of support. Cooking, housework, and assisting the patient, if she was confined to a bed are categorized under instrumental/tangible support. t was hypothesized t hat these types of assistance would more likely be provided by men; however, research i ndicates that they were more likely to be provided by women.
150 H1.b., Cultural expectations that women should not burden family and friends with personal concerns/worries will negatively influence social support. Beliefs and concerns about protecting the family an d not burdening them with personal concerns were mentioned frequently by part icipants interviewed in Phase I. Participants were asked if they agreed or disagreed with the following two statements: a) It is best not to burden family and friends with p ersonal concerns/worries, and b) The needs of the family should come before your own. T able 4.9 illustrates the percentage of participants who agreed with each statement. For example, 55% agreed that it was best not to burden family and friends with personal concerns, and 41.7% agreed that the needs of the family should come before your ow n. Table 4.9 Cultural Beliefs and Expectations N=60 Percent Agree Percent Disagree p value It is best not to burden family and friends with personal concerns/worries. 55.0 45.0 .001 The needs of the family should come before your own 41.7 58.3 .014 We have to accept suffering 76.3 23.7 .134 We have to resign ourselves to what life brings, we can not change what is going to happen 75.0 25.0 .432 A Mann-Whitney Test was used to compare the overall social support score of those who agreed with the statement that It was be st not to burden family and friends with the overall social support score of those that disagreed with the statement. This test was found to be statistically significant, z = -3.236, p < .01. This indicates that women who agreed that it is best not to burden family and friends with personal concerns also report less overall social s upport. A Mann-Whitney Test was also performed to compare t he mean overall social support score of those who agreed with the statemen t that The needs of the family should come before your own with the mean overall social support score of those that disagreed with the statement. This test was found t o be statistically significant, z=
151 2.448, p < .05. This indicates that women who agreed that th e needs of the family should come first also report less overall social s upport. To assess beliefs and expectations regarding being strong/tolerant about pain and accept suffering, participants were asked if th ey agreed or disagreed with the following two statements: We have to accept suffer ing, and We have to resign ourselves to what life brings; we can not change wh at is going to happen. A MannWhitney Test was used to compare the mean overall s ocial support score of those who agreed with the statement that We have to accept s uffering with the mean overall social support score of those that disagreed with t he statement. This test was found not to be statistically significant, z= -1.49, p > .05. The same statistical test was done to compare the m ean overall social support score of those who agreed with the statement that We have to resign ourselves to what life brings, we can not change what is going to hap pen with the mean overall social support score of those that disagreed with the stat ement. This test was found not to be statistically significant, z=-.786, p > .05. Participants were also asked if they told their fam ily about their diagnosis right away, if they waited to tell them, or if they had n ot told their family (See Table 5). The majority of participants (65%) did tell their famil y right away, while 33% waited to tell their family about their diagnosis. Correlation analysis (Spearmans rho) was used to discern if there was a relationship between when the patien ts told their family about their diagnosis and the overall social support they recei ved. There was no significant correlation, r=-.191(58), p>.05. Participants were also asked if they ever felt they needed to maintain a happy/strong face during their cancer treatment (Se e Table 4.10). A large percentage of participants (48.3%) felt that they did. A correlat ion analysis (Spearmans rho) was done to see if there was a relationship between having t o keep a happy/strong face and the
152 overall social support the patient received; howeve r, there was no significant correlation, r= -.057(58), p>.05. Table 4.10. Communication with Family N=60 Percent Did you tell your family about your diagnosis? Yes, right away 65.0 Yes, but I waited to tell them 33.3 No, I have not told them about my diagnosis 1.7 Have you ever felt you needed to keep a happy/stron g face during your cancer treatment? No 28.3 Sometimes 23.3 Yes 48.3 Chi-square and Mann Whitney Test were used to furt her explore possible differences between the demographic factors of inte rest: age (under 50/over 50), ethnicity (Colombia, Cuba, Dominican Republic, Mexi co and Puerto Rico), length of time in the US (10 years or less/more than 10 years), En glish proficiency, marital status (married or not), and the selected beliefs and cult ural expectations discussed above. Table 4.11 shows there was only a significant diffe rence being between younger and older women who agreed with the statement The needs of the family should come before your own. c2 =10.823(1, N=60), p<.01. This indicates that older women were more likely to agree with the statement than younge r women. There was no significant difference between younger and older women regardin g when they told their family about their diagnosis and whether they believed the y needed to maintain a strong/happy face during treatment. There was no significant dif ference between ethnicity and the selected beliefs and cultural expectations.
153 Table 4.11. Comparing Cultural Beliefs and Expecta tions between Older and Younger Women 50 and younger (n=27) Older than 50 (n=33) p value % Agree % Agree It is best not to burden family and friends with personal concerns/worries. 52.0 58.0 .795 The needs of the family should come before your own 18.5 60.6 .001 We have to accept suffering 69.2 81.8 .358 We have to resign ourselves to what life brings; we can not change what is going to happen 63.0 84.8 .073 Table 4.12 shows that women who have been in the US more than 10 years feel that one must accept suffering, c2 =5.229(1,N=60),p<.05. There were no other significa nt effects. There was no significant difference betwee n women who have been in the US 10 years or less and women who have been in the US 10 or more years regarding when they told their family about their diagnosis and wh ether they believed they needed to maintain a strong/happy face during treatment. Table 4.12. Comparing Cultural Beliefs and Expecta tions between Women Who Have Been in the US =/< 10 Years and >10 Years =/< 10 years (n=20) > 10 years (n=40) p value % Agree % Agree It is best not to burden family and friends with personal concerns/worries. 45.0 60.0 .288 The needs of the family should come before your own 35.0 45.0 .581 We have to accept suffering 57.9 85.0 .046 We have to resign ourselves to what life brings; we can not change what is going to happen 65.0 89.0 .223 Table 4.13 shows that just over half of the women w ho have high English proficiency agree with the statement We have to ac cept suffering, as compared to 80% of women with moderate English proficiency, and 90% of women with low English
154 proficiency. The difference was significant, c2 =7.871(2, N=60),p<.05. This indicates that women with low English proficiency were more likely to agree with the statement We have to accept suffering. There was no significant difference between women who have low, moderate or high English proficiency regarding when they told their family about their diagnosis and whether they believed they need ed to maintain a strong/happy face during treatment. Table 4.13. Comparing Cultural Beliefs and Expecta tions among Women Who Have Low, Moderate and High English Proficiency Low EP (n=22) Moderate EP (n=20) High EP (n=18) p value % Agree % Agree % Agree It is best not to burden family and friends with personal concerns/worries 68.2 50.0 44.4 .278 The needs of the family should come before your own 54.5 35.0 33.3 .304 We have to accept suffering 90.9 80.0 52.9 .020 We have to resign ourselves to what life brings; we can not change what is going to happen 86.4 75.0 61.1 .186 There was no significant relationship between mari tal status and the selected cultural beliefs and expectations (Table 4.14, See next page). There was also no significant difference between women who were marri ed and those that were not in their responses to when they told their family about thei r diagnosis. There was a significant difference between women w ho were married and those that were not in their response to the question Have you ever felt you needed to keep a happy/strong face during your cancer treatment? Tw ice as many married women (20 of 31) felt they had to keep a strong face, as compare d to unmarried women (9 of 29), c2 =6.727(2, N=60), p < .05.
155 Table 4.14. Comparing Cultural Beliefs and Expecta tions between Women Who Are Married And Not Married Not Married (n=29) % Agree Married (n=31) % Agree p value It is best not to burden family and friends with personal concerns/worries. 54.5 45.5 .211 The needs of the family should come before your own 48 52 .586 We have to accept suffering 46.7 53.3 .534 We have to resign ourselves to what life brings; we can not change what is going to happen 46.7 53.3 .440 Table 4.15 illustrates the percentage of women who agree with the selected cultural beliefs and expectation statements by ethn icity. There was no significant difference. Table 4.15. Comparing Cultural Beliefs and Expecta tions among Colombian, Cuban, Dominican, Mexican and Puerto Rican Women Colombia Cuba Dominican Republic Mexico Puerto Rico p value n=10 n=7 n=5 n=5 n=20 % Agree % Agree % Agree % Agree % Agree It is best not to burden family and friends with personal concerns/worries. 29.2 8.3 16.7 8.3 37.5 .281 The needs of the family should come before your own 26.3 15.8 15.8 10.5 31.6 .718 We have to accept suffering 20.6 14.7 14.7 8.8 41.2 .668 We have to resign ourselves to what life brings; we can not change what is going to happen 19.4 19.4 8.3 11.0 41.7 .523
156 Language (English proficiency), provider communicat ion and social support (Hypothesis 2) The next few paragraphs describe results related t o Hypothesis H2 and H.2.a. H2. Language (English proficiency) will be positive ly associated with social support. Correlation analysis (Spearmans rho) was used to explore the relationship between English proficiency and overall social supp ort, r=.023(58), p >.05. The correlation analysis indicates that there was no si gnificant relationship between English proficiency and overall social support. Findings do not provide evidence for this hypothesis. H2.a Women with limited English proficiency will be less likely to have informational support than those that who are English proficient. Health providers, namely physicians, are a source of informational support, specifically information related to disease and tre atment information, which women in the in-depth interviews listed as the most important in formation that a woman with cancer needed to know. A majority of the women interviewed (58.3-63.3%) reported that, yes, they were able to communicate with their health pro vider (Table 4.16, next page). Correlation analysis (Spearmans rho) was used to d etermine if there was a relationship between English proficiency and provider communicat ion, which was assessed using a four item provider communication scale (See Chapter 4 Methodology). Results show that there is a moderate correlation between English pro ficiency and provider communication, r .366(58), p<.05. Those with higher English proficie ncy also report better provider communication.
157 Table 4.16 Provider Communication N=60 No % Sometimes % Yes % Did you understand all the explanations and instructions you received from your doctor? 6.7 33.3 60.0 Did you receive sufficient information about the treatment you received? 16.7 25.0 58.3 Where you able to communicate your worries and concerns to your doctors? 15.0 25.0 60.0 Did you feel your doctor listened to your concerns? 16.7 20.0 63.3 Results in Table 4.17 show that women with low Eng lish proficiency are more likely to have someone help them with paperwork (90 .5%) than women with high English proficiency (25%), c2 =14.836(2),N=60),p<.01. Similarly, women with low E nglish proficiency and moderate English proficiency are al so more likely to have someone to interpret/translate for them than women with high E nglish proficiency, c2 =20.913(2), N=60, p<.01. Table 4.17. English Proficiency and Informational Support Low EP (n=22) Moderate EP (n=20) High EP (n=18) p value % Yes % Yes % Yes Someone to help you fill out medical-related paperwork 90.5 52.6 25.0 .001 Someone to help you figure out insurance issues 40.0 38.9 25.0 .659 Someone to interpret / translate for you 77.3 83.3 0.0 .000 Someone to help you find resources 40.9 31.6 31.5 .297 To determine if there was a difference in the rate of English proficiency (low, moderate, high) between younger and older women, a Chi-square test was run. Results show no significant difference, c2 =5.048 (2, N=60),p >.05. A Kruskal Wallis test was used to determine if there was a difference in Engl ish proficiency (score) between women of different ethnicities (There was no signif icant difference in English proficiency among the different ethnicities, c2 =4.648 (4,N=47),p >.05. Informational support
158 measures assume that all women need help with paper work, insurance issues, translation and resources. A Mann Whitney Test was done to determine if there was a difference in English proficiency (score) between women who had been in t he US 10 years or less compared to those who had been in the US more than 10 years. Results show there was a significant difference, z=-3.036, p < .01. It indic ates that women who have been in the US a longer period of time are more English profici ent. There was no significant difference in English proficiency between women who were married and those who were unmarried, z= -.784, p >.05. Chronic stress, psychosocial distress and social su pport (Hypothesis 3) The next few paragraphs detail results related to H3 and psychosocial distress and social support. H3. Chronic stress (poverty, family problems, econo mic/financial problems, immigration status) will be negatively associated with social s upport. Findings from the in-depth interviews revealed two main categories of stressors: social/socioeconomic factors and disease-related fa ctors. The results related to chronic stress, social/socioeconomic factors and social sup port will be presented first. Then the data on disease-related stressors and their associa tion with social support will be offered. A majority of women who had children (54%) said th at the relationship with their children was not a problem and/or was not stressful for them. However, almost 38% said that providing for their family was a problem or pr oved to be stressful. Paying household bills was a problem or was stressful for 40.7% of t he participants. Immigration status was not a problem for 75% of the women (See Table 4.18, next page).
159 Table 4.18. Chronic Stress: Stressful Situations a nd Events Experienced By Participants Are any of the following a problem or stressful for you? No % Sometimes % Yes % Relationship with my children (n=48) 54.0 20.8 25.0 Providing for my family (n=48) 45.8 16.7 37.5 Not being able to pay for medications (n=58) 44.8 20.7 34.5 Paying household bills (rent, electricity, water et c) (n=59) 40.7 18.6 40.7 Immigrations status (n=52) 75.0 3.8 21.2 The type of work you do (n=34) 58.8 20.6 20.6 Work environment (n=34) 64.7 14.7 20.6 Using the seven-item chronic stress scale (See Chap ter 3 Methodology), a correlation analysis was used to determine if there was a relationship between chronic stress and overall social support. Results show tha t there was a moderate significant negative correlation, r = -.431(58), p< .01, between overall social support and chronic stress. That indicates that women who reported high er chronic stress also reported lower overall social support. Chronic stress reported by women who were less than 50 yrs of age was compared to chronic stress reported by those who we re 50 years and older. There was no significant difference, z=-.268, p >.05. A Krus kal Wallis Test was used to compare chronic stress among the different ethnic groups. R esults show that there was a significant difference between Colombian, Cuban, Do minican, Mexican and Puerto Rican, c2 =9.802 (4, N=47), p <.05. Chronic stress reported by women who had been in t he US less than 10 years was compared to chronic stress reported by women wh o had been in the US for 10 years or more. There was no significant difference, z=-.126, p >.05. There was also no significant difference in chronic stress between pa rticipants who were married and those who were unmarried, z=-1.633, p.>05. A correlation analysis was used to determine if there was a relationship between chronic stress and English proficiency. Results show
160 that there was a moderate significant correlation, r = -.358(58), p <.01, between English proficiency and chronic stress. This indicates that women with higher English proficiency also reported less chronic stress. Socioeconomic factors that influence social support Household income and employment are important socio economic factors. Thus, a Kruskal-Wallis Test was run to determine if there was a relationship between household income (See Table 4.19 for income breakdo wn) and overall social support No significant difference was found, c2 =7.019(4, N=60), p>.05. Table 4.19. Household Income N=60 Household income Percent 10,000 or less 28.3 10,001-30,000 33.3 30,001-50,000 15.0 More than 50,000 11.7 Do not know 11.7 Source of Income Own/ Spouse Salary 63.3 Social Security 28.3 Economic Assistance from Children 18.3 Economic Assistance from Family 20.0 Rent from Other Properties 3.3 Own Business 3.3 Other 20.0 Mann-Whitney test results comparing social support between those who had a household income of $10,000 or less (28.3%) to thos e with a household income of more than $10,000 proved to be statistically significant z=-2.431, p<.05. This indicates that women who have a household income of $10,000 or les s report lower overall social support. The participants responses to the statement It is best not to burden family and friends with personal concerns/worries were compar ed between those whose household income was $10,000 or less (28.3%) and th ose that had a household income greater that $10,000. Results show there was a sign ificant difference, c2 =4.418
161 (1,N=60),p <.05, with a higher percentage of partic ipants who had a household income less that $10,000 agreeing with the statement. A Kruskal-Wallis Test was run to determine if there was a relationship between current employment (See Table 4.20) and overall soc ial support. No significant relationship was found, c2 =6.566 (5,N=60), p>.05. Current employment was divi ded into two categories: those that worked (part time and fu ll time) (43.4%) and those that did not work (homemakers, retired, disabled). Mann-Whitney Test results comparing those who worked with those who did not work were found to be statistically significant, z=-2.204, p<.05 This indicates that women who did not work reported lower overall social support. Table 4.20. Employment Status N=60 Current Employment Percent Fulltime 36.7 Half time 6.7 Retired 13.3 Ama de casa (homemaker) 13.3 Unemployed looking for work 5.0 Unemployed due to disability/illness 25.0 The responses to the statement The needs of the f amily should come before your own were compared from participants who worke d and from participants who did not work. Findings show there was a significant dif ference, c2 = 13.039 (1, N=60), p <.01, with a higher percentage of those who did not work stating they agree with the statement. Disease-related distress and social support Data from the in-depth interviews also revealed imp ortant disease-related stressors, thus the relationship between these stre ssors and social support was also investigated. Table 4.21 provides a snapshot of wom ens distress associated with their illness/treatment. Fifty percent of women report th at their illness was very distressing to their family. When asked if their sexual/intimate r elationship with their spouse had been negatively impacted by their illness, 43.6% respond ed yes, a lot. A majority of the
162 women (58.7%) who worked said that their illness an d treatment had interfered with their employment. Forty-five percent said their illness h ad interfered with their activities at home. About a third of the women (33.3%) said they felt isolated because of their illness/treatment. Table 4.21. Distress Associated with Illness/Treatm ent No, not at all % A little % Yes, a lot % How distressing has your illness been for your family? (n=60) 20.0 30.0 50.0 Has your sexual/intimate relationship with your spouse/partner been negatively impacted by your illness? (n=39) 43.6 12.8 43.6 Has your illness and treatment interfered with your employment? (n=46) 37.0 4.3 58.7 Has your illness and treatment interfered with your activities at home? (n=60) 20.0 35.0 45.0 Do you ever feel isolated because of your illness or treatment? (n=60) 40.0 26.7 33.3 No Sometimes Yes Have you ever felt you had to make a choice between working to support your family and following your treatment? (n=60) 71.7 3.3 25.0 Correlation analysis was done to determine if there was a relationship between family distress and overall social support. Results found no significant relationship, r=.066, p >.05. Similarly, there was no significant association between the sexual/intimate relationship and overall social sup port, r=-.038, p>.05, nor between employment interference and overall social support, r=-.046, p>.05, nor between interference with household activities and overall social support, r=.193, p>.05. However, there was a moderate significant correlati on, of r= -.467, p<.01, between women who report feeling isolated because of their illness or treatment and overall social support. This indicates that women who repor t feeling more isolated also report less overall social support. There was no correlati on between having to choose between working and receiving treatment and overall social support, r=-.60, p>.05.
163 Immigration, Length of Time in the US and Social Su pport (Hypothesis 4) The following paragraphs details the results relate d to H4, H4.a, and H4.b. H4. Length of time in the US will influence social support. Table 4.22 details data related to length of time in the US and ties to the participants native country. Almost half of the wo men (46.7%) had been in the US for 20 years or longer. The average number of years in the US was 21.6. Almost 17% had lived in the US five years or less. Thirty-five percent c ame to the United States alone. Mean age at emigration was 30. Colombian participants ha d been in the US the shortest amount of time, and Puerto Rican participants had b een in the US for the longest amount of time. Table 4.22. Length of Time in the US and Ties to Fa mily in Native Country (N=60) Length of time in the US Percent Lived in the US 5 yrs or less 16.7 Lived in the US Between 6-10 yrs 20.0 Lived in the US Between 11-15 yrs 10.0 Lived in the US Between 16-20 yrs 6.7 Lived in the US more than 21 years 46.7 Who came with you to the USA? Alone 35.0 With husband and or family members 65.0 How Often Communicate with Family in Native Country ? Never 3.3 Every Once in a While 15.0 Once a Month 10.0 Once a Week 45.0 More than Once a Week 25.0 Not Applicable 1.7 Sent Remittances Back Home Before Diagnosis 54.2 Did Diagnosis Affect Ability to Send Remittances Ho me? Could No Longer Send Remittances 37.5 A Little, Could Not Send as Much as Before 43.8 Not at all 18.8 Over 50% sent remittances to their family before th ey were diagnosed with cancer; however, after the cancer diagnosis, 37.5% of those who sent remittances reported no longer being able to send money to their family in their native country.
164 A correlation analysis (Spearmans rho) was done t o assess if there was a relationship between the length of time the partici pant had been in the US and overall social support. Results found no significant relati onship, r=-.022(58), p >.05. Years spent in the US was collapsed into two categories and a M ann-Whitney Test was then used to determine if there was a difference in overall soci al support between women who had been in the US less than 10 years and those who had been in the US more than 10 years. There was no significant difference, z=-.840 p >.05. A Mann-Whitney Test was used to see if there was a difference in the length of time women had been in the US before they were diagnosed and overall social suppo rt. Women who had been in the US 10 years or less before they were diagnosed were co mpared to women who had been in the US more than 10 years before they were diagnose d with breast cancer. There was no significant difference between the length of tim e women had been in the US before the cancer diagnosis and overall social support, z= -.136, p>.05. Findings show that 35% of women immigrated to the US alone. A Mann-Whitney Test was performed to determine if t here was a relationship between overall social support and coming to the US alone. Results show that there is a significant difference in overall social support be tween those that came to the US alone and those that came with family, z=-3.058, p <.01. Thus, women who came to the US with family report higher overall social support th an those that came to the US alone. H4. a., Women who have been in the US a shorter per iod of time will likely rely on family and friends in their native county for emotional su pport. Each participant was asked if she had a particular type of emotional support. If she responded yes, then she was asked to list up to three people that provided that type of support. Then, she was asked to identify if they lived in the US or in their native country. Table 4.23 (next page) and Figure 5.5 illu strate the percentage of people who provided support to the participant by where they l ived (i.e., if they lived in their native
165 country or if they lived in the US) and by the leng th of time the participant had been in the US. A slightly higher percentage of participant s who lived in the US over 10 years (32.5%, n=13) reported not having someone who under stands their problems compared to participants who had been in the use 10 years or less (20%, n=4). Data also illustrate that a higher proportion of participants who had be en in the US 10 years or less report receiving emotional support from someone in their n ative country compared to participants who had been in the US more than 10 ye ars. For example, 20% (n=4) of participants who lived in the US 10 years or less r eport only having someone who understands their problems in the their native coun try compared to 0% of participants who had been in the US 10 or more years. Interestin gly though, across all the types of emotional support listed, a higher proportion of su pport was provided by someone in the United States regardless of the length of time the participant had lived in the United States. Figure 4.5 visually illustrates the percentage of women who reported having a particular type of emotional support from someone i n their native country, in the US or both in the US and their native country by length o f time the participant has spent in the US (10 years or less compared to more that 10 years ). To determine if there was a relationship between the numbers of years the parti cipant has spent in the US and emotional support (See Methods Section) from someon e in their native country, a correlation analysis was done. Results found no cor relation, r=-.216, p >.05. This indicates that there is no significant relationship between the length of time the participants have been in the US and the emotional support received from someone their native country.
166 Table 4.23. Comparing Emotional Support from Someon e in Native Country vs. Someone in US by Length of Time Participant has Spent in th e US Have support from No Support Someone in their native country Someone in the USA Both someone in native country and in USA Length of time in the US = 10 (n=20) % > 10 (n=40) % = 10 (n=20) % > 10 (n=40) % = 10 (n=20) % > 10 (n=40) % = 10 (n=20) % > 10 (n=40) % Someone who listens to you when you need to talk N=60 30.0 25.0 15.0 5.0 40.0 57.5 15.0 12.5 Someone to confide in or talk to about your problems N=59 20.0 27.5 5.0 5.0 50.0 60.0 25.0 7.5.0 Someone who is patient with you N=59 30.0 17.5 5.0 2.5.0 50.0 80.0 15.0 0.0 Someone who encourages you N=60 5.0 12.5 10.0 2.5.0 75.0 80.0 10.0 5.0 Someone who understands your problems N=59 20.0 32.5 20.0 0.0 55.0 65.0 5.0 2.5 Someone who shows you love and affection N=60 20.0 12.5 10.0 0.0 50.0 80.0 20.0 7.5 Someone to do something enjoyable with N=59 25.0 32.5 5.0 0.0 65.0 60.0 5.0 7.5 Someone to visit you at home or in the hospital, if you were not feeling well N=60 10.0 10.0 5.0 0.0 80.0 87.5 5.0 2.5
167 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% =10 yrs> 10 yrs=10 yrs> 10 yrs=10 yrs> 10 yrs =10 yrs> 10 yrs=10 yrs> 10 yrs=10 yrs> 10 yrs Someone who listens to you when you need to talk Someone to confide in or talk to about your problems Someone who is patient with you Someone who encourages you Someone who understands your problems Someone who shows you love and affection No Support Someone from native country Somone from USA Someone from both native country and USA Figure 4.5. Comparison of Emotional Support from So meone in Native Country or Someone in the USA by Length of Time the Participants have been in the US
168 Even though many of the women have been in the US f or several years, there still appear to be strong ties with family that remained in their native country. Table 4.24 and Figure 4.6 illustrate the frequency of communicatio n with friends and family in the participants native countries via phone or email. A higher percentage (85%) of women who had been in the US 10 or fewer years were in co ntact with family in their native country at least once a week, as compared to women who had been in the US over 10 years (62.5%). Table 4.24. Communication with Friends and Family i n Native Country Frequency of communication with friends and family in native country via phone or email 10 or fewer years (n=20) % Over 10 years (n=40) % Never 0.0 5.0 Every once in a while 5.0 20.0 Once a month 10.0 10.0 Once a week 55.0 40.0 More than once a week 30.0 22.5 Not applicable 0.0 2.5 Figure 4.6 Communications with Friends/ Family in N ative Country Frequency of communication with family and friends in native country by length of time in the US 0102030405060 Once a month Once a week More than once a week Every once in a while Never Not applicable Percent <= 10 yrs > 10 yrs H4.b. Women who have been in the US for a shorter p eriod of time will likely have less informational support than those who have been here a longer period of time
169 Table 4.25 compares the percentage of participants that reported yes to having the selected types of informational support by leng th of time the participants had been in the US (those who have been here 10 years or less c ompared to those who have been here more than 10 years). Table 4.25 Comparing Informational Support between Women Who Have Been in the US =/< 10 Years and >10 Years 10 or fewer years (n=20) Over 10 years (n=40) p value Yes % Yes % Someone to help you fill out medical-related paperwork 70 56 .389 Someone to help you figure out insurance issues 36.8 35.5 .923 Someone to help you find resources 36.8 28.6 .554 Someone to interpret / translate 75 58.6 .236 Results in Table 4.25 show that women who have bee n in the US for 10 years or less are not more likely to have someone help them with paperwork than those who have been in the US more than 10 years, c2 =.983(1), N=52), p>.05. Women who have been in the US for10 years or less are not more likely to have someone help them figure out insurance issues than those who have been in the US more than 10 years, c2 =.009(1), N=50), p>.05. Women who have been in the US 10 years or less are not more likely to have someone help them find resources than those who hav e been in the US more than 10 years, c2 =.391(1), N=54), p>.05. Women who have been in the US 10 years or less are not more likely to have to interpret/translate for them than those who have be en in the US more than 10 years, c2 =1.402(1), N=49), p>.05.
170 A Mann Whitney Test was performed to compare the me an provider communication score, which was assessed using a fou r item provider communication scale (See Table 9), comparing responses of partici pants that had been in the US 10 years or less to responses of participants that had been in the US for more than 10 years. Results show there was a significant relatio nship, z=-1.976, p<.05. This indicates that women who have been in the US for a longer per iod of time also report better provider communication. There was no difference between marital status and length of time in the US, c2 =.843(1), N=60), p>.05. A Kruskal Wallis test was d one to determine if there was a difference between ethnicity and length of time in the US. There was a significant difference, c2 =12.193 (4, N=47), p <.05. Colombian participants h ad been in the US the shortest amount of time, and Puerto Rican participa nts had been in the US for the longest amount of time. There was a significant dif ference in length of time participants has spent in the US (10 years or less vs. more than 10 years) and age, c2 =.4.84(1), N=60), p<.05. Seventy nine percent of women over 50 had been in the US for more than 10 years compared to 48% of younger women. In summary, findings from the in-depth interviews and structured questionnaires provide a contextual understanding of social suppor t and suggest that cultural beliefs and the social environment in which support is give n and received influences social support. Furthermore, the data presented in this ch apter call attention to the support and psychosocial needs of Latina immigrant breast cance r survivors. The next chapter includes a discussion of the research findings as t hey relate to the research objectives and hypotheses. Please note, while the data provide s an abundance of information the discussion will focus on the findings that relate b ack to the research hypothesis.
171 Chapter 5: Discussion Introduction The first part of this chapter provides a brief re view of the hypotheses as an organization technique for the ensuing discussion. Then the discussion of the findings and their relationship to the literature are presen ted. The discussion is organized thematically. This section is followed by a descrip tion of the study limitations. The combination of qualitative and quantitative methods used in this dissertation allows for data triangulation and improves the internal validi ty of the findings. Overview of study findings The qualitative findings address, in part, the fir st research question of this study. Which was how do cultural and structural factors c ombine to shape the assumptions, beliefs, and values that constitute social support among Latinas diagnosed with breast cancer? Quantitative findings address, in part, t he second research question of this study, what are the cultural and structural factor s that influence social support among Latina immigrants diagnosed with breast cancer? Fur thermore, results illustrate how cultural and social environmental factors shape the assumptions, beliefs, and values that constitute social support and help identify some of the sociocultural factors that are associated with this construct. As described in Cha pter 4 Methods, content analysis techniques were used to analyze qualitative data an d nonparametric tests (e.g. Mann Whitney Test, Chi-Square, Kruskal Wallis and Spearm ans correlation) were used to analyze the quantitative data derived from the stru ctured interviews. While the interview guide and structured questionnaire generated rich a nd abundant data, the discussion in this chapter will primarily focus on the findings t hat are directly related to the projects
172 research objectives and hypothesis. Table 5.1 provi des a brief overview of the findings as they relate to the research objectives and hypot hesis. Table 5.1. Research Objectives and Hypothesis as Su pported by Findings Research objectives Met by O1: Contextualize the cancer experience of Latina immigrants diagnosed with breast cancer. Met through qualitative data O2: Explore the sociocultural domains of social support. Met through qualitative and quantitative data O3: Identify the cultural and structural factors th at influence social support among immigrant Latinas diagnosed with breast cancer. Met through qualitative and quantitative data O4: Identify the information and support needs of Latina immigrant breast cancer survivors Met through qualitative data O5: Provide recommendations for community-based organizations, clinical practice and psycho-oncolog y Not applibacle Hypothesis Support by H1. Cultural expectations about gender roles will influence social support Supported by qualitative data H1.a. Compared to women, a higher proportion of men will likely provide instrumental/ tangible support, and a higher proportion of women will likely provide emotional/personal support, compared to men. Supported by quantitative data H1.b., Cultural expectations that women should not burden family and friends with personal concerns/worries will negatively influence social support. Supported by qualitative data and quantitative data H1. c., Cultural expectations to be strong ( aguantar /tolerant) will negatively influence social support. Supported by qualitative data Unsupported by quantitative data H2. Language (English proficiency) will be positive ly associated with social support. Unsupported by quantitative data H2.a., Women with limited English proficiency will be less likely to have informational support than those that who are English proficient. Table continued on next page Supported by qualitative data and partially supported by quantitative data
173 Table 5.1 continued from previous page H3. Chronic stress (family problems, economic/financial problems, immigration status) wi ll be negatively associated with social support. Supported by qualitative and quantitative data H4. Length of time in the US will influence social support.Either these all need periods, or none do. Unsupported by quantitative data H4. a., Women who have been in the US a shorter period of time than whom? will likely rely on family and friends in their native county for emotional support. Partially supported by qualitative and quantitative data H4.b., Women who have been in the US for a shorter period of time will likely have less informational support than those who have been here a longer period of time. Unsupported by quantitative data Gender roles and support Men may visit you but their visits are much shorte r, women will talk more, men may talk briefly about the illness but that is it, they take you to the doctor. Women always bring something, and talk more. [Leslie, Argentina, Stage III] In order to contextualize the breast cancer experi ence and understand the cultural beliefs and expectations that mediate soci al support it was important to explore the influence culturally ascribed gender roles migh t have on social support. Key informants relate that culturally defined gender ro les influenced the support Latino male and female cancer patients received and who the rec eive it from. They observe that women tend to go to doctor appointments by themselv es while their Latino male counterparts usually go to oncology appointments ac companied by their wives. Data from the in-depth interviews also show cultural nor ms about gender roles and the influence these have on the kinds of assistance pro vided by men and women when someone was sick. When asked to describe what men a nd women did when someone was sick, participants clearly articulated the thin gs that were done by men and the things that were done by women. Womens ideas about who sh ould provide different types of
174 support reflect principles of gender and were clear ly defined, as there was little overlap regarding what participants said was expected of wo men when someone was sick and what was expected of men. Men appeared to be more likely to provide tangible/instrumental assistance (e.g., manage pape r work, drive to the doctor) while women were more likely to provide emotional support nurture, and care for the patient. For example, key informants related that from their personal observations, Latina women, unlike their American counterparts, tended t o go to oncology appointments alone or with other female relatives/friends more o ften than with their husbands or other male relatives/friends. They also commented that La tina patients tended to get dropped off by their husbands, who later came to pick them up after their appointments. Building on the results from the key informant and in-depth interviews results from the structured questionnaire illustrate a simi lar pattern and for the most part verify the findings from Phase I. Men were listed more fre quently in helping with things outside the home like going to the pharmacy, driving to the doctor, and paying bills. Women were listed more frequently with providing emotiona l support such as listening, talking, encouraging, understanding, and visiting. I had hyp othesized that men would provide instrumental/tangible support, like help if confine d to a bed, cooking and housework, but that support was more frequently provided by women. Overall, it appears that a larger proportion of su pport was provided by women (e.g., mothers, daughters, and girl friends) and fe llow cancer survivors, who were identified as trusted information sources. The type s of support that are available from men are consistent with mens culturally defined ro les as described by participants in the in-depth interviews. These findings are consistent with the literature, which reports that women diagnosed with cancer need and seek support f rom other women (Campbell et al 2004; Erwin et al 2007; Ferrell et al 2003; Isaksen et al 2003; Wellisch et al 1999). Studies also report that Latinas are more likely to get support from other female relatives
175 and comadres (Jones et al 1999) than from their husbands/partne rs (MartinezSchallmoser et al 2003). However, while these findi ngs may suggest that women give more support then men, it might be worth considerin g that husbands and male relatives may be just as supportive but in modes that are cul turally prescribed, such as working to financially support the family and purchasing medic ations. According to Erwin et al, Latinos have a patriarchal system where sources of power and authority favor the man in male/female relationships and define certain rol es and relationships for women. Latino men may be more likely to drive and control access to health care due to their privileged economic status (Erwin et al 2005); women are also often financially depend upon men. Another consideration is that many Hispanic immigr ant men work in low-wage service jobs (Flores-Ortiz 2000) that usually have limited employment benefits (i.e., may or may not include vacation and/or sick days). Thus they may not be able to take time off of work to accompany their ailing wives, especi ally in the case of cancer where there are so many follow-up and treatment appointments. I n sum, the data supports the observations that gender roles mediate support sinc e they shape the kinds of support available to women and deemed appropriate for them to expect/seek (Erwin et al 2005; Kagawa-Singer & Wellisch 2003; Kagawa-Singer et al 1997). Delicate balance between telling and protecting: In ternal turmoil and external calm At first they [parents in Peru] wanted me to retur n to Peru, but I stayed. I did not want to worry them, I had to be strong. I did not t ell them when they were doing the test. I did not tell them because I did not wan t to alarm them. [Reina, Peru, Stage III] Key informant interviews revealed the culturally m ediated beliefs and practices related to protecting family and communicating with family, specifically parents and children, about the cancer diagnosis negatively aff ected Latina immigrants diagnosed with breast cancer. The discussion regarding this t opic was emerged within the context of stress, specifically in response to the question s asking key informants to describe the
176 things that stressors Latina immigrants diagnosed w ith breast cancer might encounter. This topic was further explored with in-depth inter view participants. Key informants also discussed how cancer changed social roles and affec ted womens ability to fulfill their family and household obligations. They went on to s ay that this disconnect was also an additional source of stress for Latina women diagno sed with breast cancer. Data from the in-depth interviews are consistent w ith the findings from the key informant interviews regarding womens role and the delicate balance women seemed to navigate between telling and protecting. In-depth i nterview participants discussed the stress communicating their diagnosis to their famil ies caused them and described how they waited to tell or told their family they were alright when in reality they were in physical or emotional discomfort and pain. In-depth interview findings also suggest Latina wo mens roles center around homemaking duties ama de casa (this includes cooking, cleaning), being a wife, caring for the family, working, nurturing and providing st rength. Participants discussed how cancer had affected their abilities to fulfill thes e social roles. Another related theme emerged from the in-depth interviews was that parti cipants felt women needed to aceptar to be fuerte y aguantar (to accept, be strong and tolerant) and resignarse (resign) themselves to what life brings. Participan ts also emphasized how in the U.S. Latina women had to be especially strong and contin ue to work (in and outside the home) when they were ill because they did not have the extended family support they had in their native countries. In addition, partici pants suggested that women had to be strong and mantener la tranquilidad (keep the peace/calm) for their families. Participa nts related how, in order to protect their families, th ey sometimes had to disguise and hide how they felt (emotionally and physically). Themes that emerged from the key informant and indepth interviews were further explored in Phase II. The structured questi onnaire included items to assess if
177 culturally mediated beliefs about womens role and protecting the family influenced social support. The results suggest that cultural b eliefs that It is best not to burden family and friends with personal concerns/worries and that Family needs should come before ones own appear to negatively influence so cial support. Two items We have to resign ourselves to what life brings, we can not ch ange what is going to happen and We have to accept suffering were included in the structured questionnaire to quantitatively explore how these cultural beliefs a nd expectations might influence social support. However, findings from the structured inte rviews did not reveal a relationship. There was also no significant relationship between having to keep a strong/happy facade and social support. A possible explanation i s that perhaps the items were ineffectively worded and failed to convey the quest ions precise intended meaning. Another reason may be that accepting suffering, as well as the situation, may be perceived by participants as dealing with it and as king for help. Ashing-Giwa and colleagues made a similar observation in which they relate that Hispanic participants reported distress about sharing their diagnoses and burdening their families with their disease which lead to some women to act as if they were not as ill in order to reduce their families concerns and continue caretaking an d professional activities as expected (Ashing-Giwa et al 2004c). One can see how this mig ht likely affect the social support system. If one does not want to burden others, s/he is less likely to ask for assistance with things they might need. This ties into what so me of the participants mentioned, regarding the meaning of social support; for them, social support is when those close to them know what patients need without needing to ask In contrast, a recent study among mostly European American women found that the major ity of women in their study were able to talk openly with their families about their breast cancer, and open communication was associated with better mental health outcomes ( Mallinger et al 2006).
178 Disclosure practices of not telling are culturally embedded. Gordon and Paci (1997) report similar findings among cancer patient s in Italy and note that non-disclosure is situated within the larger traditional practice of social unity and of protection from or adaptation to the inevitable necessities of life (G ordon & Paci 1997). Study results suggest that womens non-disclosure of their treatm ent, emotional and physical status to their family is culturally embedded. Not telling se rves to protect the family and maintain social order. The sociocultural stress of not wanti ng to burden their family with their personal concerns may stem from what Janes (1990) c alls social inconsistency. The social inconsistency or the inability to meet behav ioral or social expectations of nondisclosure associated with womens role of protecti ng and caring for the family and the personal need for support and assistance may elucid ate the stress described by women in the interviews. Perhaps this may also explain wh y Latinas, in comparison to European American women, have less social support as reporte d in the literature (Alferi et al 2001; Katapodi et al 2002) and point to the need to under stand the underlying cultural norms that guide communication and support interactions. Findings suggest the need to respect womens non-disclosure but at the same illu strate the need to find ways to support Latina women who might be under such duress Moral and spiritual support Being spiritual and my intimate relationship with G od has helped me because in the moments where I have felt alone I read the bibl e and the Lord talks to me [Sara, Puerto Rico, Stage II] Key informants delineated spirituality and faith in God were important sources of support and helped Latina immigrants diagnosed with breast cancer cope with the fear and uncertainty of a cancer diagnosis. Similarly, f aith and and prayer were also identified as forms of non-verbal support by participants in t he in-depth interviews. Participants also mentioned reading psalms and their faith in Go ds will, si Dios quiere , as forms of
179 moral support. This finding suggests that prayer an d individual faith as sources of power may help individuals deal and cope with consequence s that occur from the illness. Spirituality and prayer have been described as form s of non-verbal support among African American breast cancer patients (Ashing-Giw a et al 2004c; Erwin 2002; Farmer & Smith 2002; Hamilton & Sandelowski 2004a). For ex ample, Hamilton et al. found that African American women were more likely to receive support from prayers, which also allowed them to continue religious practices (Hamil ton & Sandelowski 2004a). Another study by Lopez et al. reports that the African Amer ican women sought support from sources (e.g., the church) they perceived to be sa fe because seeking support put them at risk of being stigmatized, discriminated against or rejected (Lopez et al 2005). This suggests that spirituality and prayer are important sources of support and should be considered in assessing social support (Ashing-Giwa et al 2006a; Benavente 2001; Erwin et al 2007). Te tengo presente (I am thinking of you) You visit the sick, bring gifts, food, fruits, you bring prayer too. You have to call, that is what we do, and family and friends are attuned and have you in mind. [Carmen, Colombia, Stage III] Another nuance/concept that emerged from observati ons and in-depth interview data was the salience of precencia (presence) in social support. This concept was not discussed by key informants and was not included in the structured questionnaire. This is different from the actual, physical presence of others; its what we, in American culture, may describe as being there, as in Ill be there. In this case the concept to which women are referring subtly yet distinctly dif fers from the American interpretation of the phrase. Precencia is the notion that others have you present in thei r thoughts as in I am thinking about you or I have you in my prayers . This [ precencia ] could be demonstrated nonverbally (e.g., by praying for some one) or fisicamente (physically)
180 (e.g., with a small gift, token, and/or gesture, li ke bringing soup). Hamilton et al. (2004) also identify the presence of others (e.g., being t here) as an important type of support among the African American participants. In their s tudy, it was described as a non-verbal expression of love and caring (Hamilton & Sandelows ki 2004a). When I first started attending the LUNA support group meetings in 2003 I remember the founder and facilitator would always bring little gifts for eac h of the members, especially during celebrations or holidays. It was very important to her that each person have a little token/gift. Now I understand why the little gifts ( which may seem trivial) were an important part of what made the support group cultu rally relevant. La familia: Source of support, source of stress In the beginning they [family] could not believe it [had cancer] but then they gave me a lot of encouragement. We would talk almos t everyday. Having them far away caused me a lot of stress. [Berta, Mexico, Stage II] Key informants observe the importance of the famil y as a source of social support for Latina immigrants diagnosed with breast cancer. Findings illustrate saliency of family and social cohesion in womans lives. How ever, the data also suggests that family can be a source of stress, in part, due to L atina immigrants worrying about family back in their native country and concern over not b eing able to provide for their family both stateside and abroad. Results from the in-depth interviews confirm the r elevance of family, which women felt was one of the most important sources of social support. Similar to the findings reported by key informants, women also ide ntified family as a source of stress. Family-related stressors delineated by participants include strained relationships, disappointment with low level of familial support, being far away from family, disclosing the cancer diagnosis, social role limitations, and having to keep a strong/happy face to avoid worrying or burdening family members. Finding s also relate to the negative effect
181 of social support, when it is expected and you do n ot receive it. Women were vital to the sustainability of their family in the United States and some to the livelihood of family back in their native country through remittances. Havin g breast cancer affected their ability to provide for family and this was another source of s tress for many of the women. Regarding support from family, similar findings ha ve also been reported by Ferrell, et al. (2003) and Landmark, et al (2002). They relate that support from family and close relatives as the most important source of sup port for women diagnosed with breast cancer (Ferrell et al 2003; Landmark et al 2002). A shing-Giwa and colleagues, who investigated the relationship between support and d istress among cancer survivors, made a similar observation. In their study Latina p articipants revealed that family was considered a source of both stress and support (Ash ing-Giwa et al 2004c). Similar themes emerged in another study by Ashing-Giwa and colleagues n which they state that Latinas reported higher levels of role limitat ions due to emotional and physical problems that may increase their stress regarding f amily roles and caregiver duties (Ashing-Giwa et al 2007). Provider communication and information needs: Does speaking English make a difference? You are limited because you do not know the langua ge, sometimes you want privacy with the doctor, but you have an interprete r there and he may not tell the doctor what you want. [Luli, Colombia, Stage III] Findings from the key informant interviews illustr ate the negative influence lack of English proficiency had on patient/provider communi cation and on the informational support Latina immigrants received. Latina immigran ts that do not speak English and can not clearly communicate with their doctors have a difficult time understanding their disease trajectory and treatment. Findings from the in-depth interviews also corroborate that limited English proficiency has a negative imp act on participants respective abilities
182 to obtain information about their treatment and the ir ability to effectively communicate with their providers. Latina immigrants had poor he alth literacy that includes difficulty understanding and acting upon health information, f rom insurance forms to medications. Several women related they did not know why they go t this treatment vs. that treatment or the stage of their breast cancer. From ongoing conversations with key informants and through participant observation, I came to understa nd that English proficiency can be a tricky thing. Women who knew a little bit of Englis h or enough English to get by were most at risk to misunderstand information given by their doctors. Conversely, women who were monolingual Spanish speakers and relied on a translator better understood the doctors report. Contrary to expectations, results from the structu red questionnaire show that English language proficiency was not associated wit h overall social support. It appears this finding is not consistent with the literature that found that language (e.g., speaking or answering questionnaire in Spanish) was associated with lower levels social support (Abraido-Lanza 2004a; Katapodi et al 2002). Perhaps the relationship between English proficiency and social support was not significant in this study because the entire sample was made up of immigrants who spoke Spanish and the re was no comparison group. While data from the structured questionnaire did n ot show a significant relationship between English proficiency and social support, data do suggest that English proficiency was associated with provider co mmunication and womens ability to effectively communicate with their cancer care prov iders. Similar findings have been reported in the literature which states that provid er communication is sometimes inadequate and is an issue to individuals diagnosed with cancer, especially those whose English proficiency is limited (Landmark et al 2002 ; Lopez et al 2005; Moore 1999). When Latinos, especially recent immigrants, seek m edical care, they bring expectations; have communication preferences and li mited familiarity with navigating the
183 health care system (Livingston et al 2008). Our hea lth care system is often poorly set up to address health literacy barriers, placing great language and fluency demands on patients and their families. Limited health literac y and the difficulties in understanding health information as described by key informants a nd participants is this study is not unique to Latina immigrants (Merriman et al 2002; S harp et al 2002). Health literacy, which is defined as the extent that individuals can understand, process and obtain health services and information to make appropriate health decisions (Nielsen-Bohlman. et al 2004). Recent review articles point to the high prevalenc e of limited health literacy and the need for high-level health navigation skills an d techniques for self-management of acute and chronic disease and promotion of health ( Dewalt et al 2004; Institute of Medicine 2004). Further, for a significant portion of the Hispanic population, English is not the primary language, and this language barrier exacerbates the problems associated with limited health literacy. Such facto rs can affect Latina immigrants ability to seek and gain access to cancer treatment, mental health and social services systems. Language then becomes a barrier to accessing benefi ts, services, information, or understanding and coping with medical treatments, c ontributing to health inequities. Findings from the structured questionnaire suggest that women with low English proficiency are more likely to have someone help th em with paperwork than women with high English proficiency. Similarly, women with low English and moderate English proficiency are also more likely to have someone to interpret/translate for them than women with high English proficiency. While I hypoth esized those with limited English proficiency would be less likely to have informatio nal support, results from the structured questionnaire do not support this hypothesis. The I nformational support measures assume that all the immigrant Latina women intervie wed need help with paperwork, insurance issues, translation and resources. The si gnificant negative relationship
184 between English proficiency and paperwork and trans lation support suggests that having informational support is due to need for informatio nal assistance, not the availability of informational support. In other words, women with l ower English proficiency levels have informational support because they need it, not nec essarily because they have more access to it. Information and support needs In the beginning when you do not have information it frustrates you, you are lost [Isis, Venezuelan, Stage I] Results from the key informant and in-depth interv iews indicate Latina immigrants diagnosed with breast cancer need inform ation about: 1) community resources (e.g., financial assistance, transportati on), 2) treatment (e.g., side effects, medications) and psychosocial issues related to can cer treatment (e.g., sexuality and intimacy). This appears to be consistent with find ings from a recent study that examined information and support needs of breast cancer surv ivors and found that Latina women desired more information on treatment-related and p sychosocial-related subjects and reported more difficulty understanding written mate rials compared to women from other ethnic groups (Janz et al 2008). Similarly, Tichen, et al. also report that patients with limited English proficiency are less satisfied with information received and would like more information about their disease (Tichen 2003). Further, women related the need to inform men and husbands about treatment side effects and the needs of cancer patients. Erwi n et al (2005) report similar results. They found that Latina women expressed interest in including educational information about womens health issues and treatment directed to men or inclusive of men in order to enlist mens support in acquiring resources (e.g ., transportation, bills) and increase their understanding (Erwin et al 2005; Erwin et al 2007). Stress and social support: Everyday realities and t he burden of cancer
185 I live in the house month to month. I do not know if we are going to stay or move I am always worried about money. Right now we need $2000. We can pay it little by little; these are things that caus e me a lot of stress. [Anita, Panama, Stage II] The key informants interviewed had extensive exper ience working with Latin American women who had been diagnosed with breast c ancer. They had an intimate grasp on the pulse of the Latina community and the needs of Latina cancer survivors. Key informants identified the problems and stressor s Latinas encountered in the United States of which access to health care was the most prominent. In addition, they discussed other health-related issues such as lack of continuity of care, inadequate health insurance and socioeconomic status as import ant issues which also serve as potential sources of stress. Regarding Latina immig rants, they delineated the stressors they dealt with on a daily basis are magnified, in part, due to their status as immigrants in the United States and additional challenges of a djusting to a different culture, changing social roles and family dynamics. Data from the in-depth interviews suggest the stre sses and problems participants experienced can be grouped into two broad categorie s 1) structural/ socioeconomic and 2) disease-related. Women described the multitude of stressors associated with the financial toll of cancer treatment, that not only i ncludes the cost of care but the loss of wages, and the burden it placed on the household an d the familys financial well-being. Interviews revealed the struggles immigrant women e ncountered accessing cancer care. Specifically the case examples of Gloria, Dafna and Agustina illustrate the influence of broader political economic forces on individual hea lth outcomes. Womens experiences are embedded within the larger context that include s immigration, health policy, access, and poverty. Furthermore, Latina immigrants also de lineated the stress caused, in part, by treatment side effects and the impact these had on their femininity, sexuality and intimacy.
186 The data provide a rich and vivid picture of the e veryday realities, stresses, and struggles Latina immigrants diagnosed with breast c ancer encounter accessing care, navigating the health care system, as well as carin g and providing for them selves and their family. These findings are consistent with th e literature (Ashing-Giwa et al 2006b) and have been reported, most notably in the Institu te of Medicine report on the unequal burden of cancer (Institute of Medicine 1999). Alth ough this report was written almost ten years ago, it appears little has changed. The case examples and stories shared by the women interviewed also poignantly illustrate what P aul Farmer calls structural violence, in which sickness is a result of the historical, so cial, and economic processes that constrict individual agency and affect the disease trajectory (Farmer 2003; Farmer et al 2006). As expected, findings from the structured question naire suggest that there was a moderate negative correlation between overall socia l support and stress. This indicates that participants who report having more stresses o r problems also report less overall social support. In addition, having a household inc ome of $10,000 or less and being unemployed were also associated with having less ov erall social support. Women who lived in poverty were also more likely to report be ing alone and isolated. Impoverished women, who in part, may be the ones in most need of support during a devastating illness like cancer, may feel powerless to ask for help. They may be embarrassed, do not want to burden others with their problems and/o r may not have the resources to do so. The findings also illustrate the complexity of trying to understand the relationship between two multifaceted constructs like stress and social support. Thus, research findings from Phase I and II suppor t the case made by Cohen and Syme who argued for a contextual understanding of social support that includes the social environment in which it occur (Cohen & Syme 1985b). Findings illustrate how culture and structural factors that include chronic stressors related to socioeconomic
187 status, employment, immigration status, and social relations might intersect to influence social support and ultimately health and disease as suggested by the literature (Berkman & Glass 2000a; Cohen 2004a; Dressler 1991) However, further examination that includes a much larger sample and more statist ically advanced techniques is needed to fully understand the interplay between th ese relationships. Staying connected, close ties, and length of time i n the US You need to look for support from other members of your family. You know, it did not cause me that much stress not having my fam ily here They called and were present through the phone and through their pr ayers. [Melania, Colombia, Stage I] Key informant interview participants did not discu ss length of time in the US per se. However, they discussed the close ties Latina i mmigrants had with their family, regardless of there they lived. Results from both the in-depth and structured inte rviews suggest that regardless of length of time in the US there appears to be str ong ties and communication with family in their native country. In addition, women also di scussed how their family back in the native country depended on them for support in the form of remittances. Many went on to report that the cancer diagnosis affected their ability to continue to send money home. Participants report frequently talking with family and friends, especially during treatment. This brings to mind my conversation with Leslie (St age III, diagnosed 1997, 2004, 2007). She talked to her mom and daughter who lived in Arg entina several times a week. The day I interviewed her she has just gotten her cell phone bill, it was for over $700. This also illustrates some difficulties women encountere d communicating and staying in touch with family in their native country. Results also underscore the important role communi cation with family and friends plays in the lives of Latina immigrants who have be en diagnosed with cancer, even if their family and friends are in their native countr y they are still sources of support. This
188 appears to be consistent with the immigration liter ature which states that family and extended family provide immigrants with significant emotional and economic support. (Kramer et al 1999; Vega & Amaro 1994; Zambrana et al 1997) Findings from the structured questionnaire suggest that length of time in the US was not associated with social support. One might e xpect that women who have been in the US a longer period of time might have had more time to develop social relationships and support networks that might have been loss when they immigrated to the US and thus have report more social support than those who have been in the US a shorter period of time. A possible explanation for the lack of association might be related to the close ties that participants maintained with family and friends in their native country. Or another point to consider is that a larger proporti on of study participants (65%) reported coming to the US with their spouse or family. Thus, those that came with family might not have experienced a disruption of social ties as suggested by the literature (Zuniga 2002). To explore this further I compared social su pport between women who came to the US alone and those that came with their spouse and/or family. Results show there was a significant difference in social support, wit h women who came to the US alone reporting less overall social support. It seems tha t it is the disruption of social ties that influences social support and not length of time in the US. The literature suggest that acculturation and leng th of time in US influence social support among Hispanics (Finch et al 2003; Flaskeru d & Uman 1996; Hovey et al 2000; Smart & Smart 1995). Length of time in the US has b een used as a proxy for acculturation (Ashing-Giwa et al 2006b; Ashing-Giwa et al 2007). While acculturation has widely been used in public health research on H ispanics, anthropologists argue there are misconceptions underlying the use of this construct to explain cultural differences (Hunt et al 2004) and negates the fluid ity of culture and the role of the social environment. A slightly higher proportion of partic ipants who had been in the US ten
189 years or less reported having someone for emotional support from their native country compared to participants who had been in the US mor e than ten years, who report a slightly higher proportion of emotional support fro m someone in the US. As expected, findings from the structured interview show that co mmunication with friends and family in native country declines with length of time in the US. However, it is notable that 62.5% of participants who had been in the US over ten years report communicating with family and friends in their native country at least once a week compared to 85% of those who had been in the US 10 years or less. Waldinger repo rts similar findings and notes that most Latino immigrants stay in regular contact with friends or family living in their country of origin (Waldinger 2007). He states that the bes t way to characterize the immigrants here-there connection is to describe them as in between. p.28. Regarding informational support, it appears that l ength of time in the US was not associated with informational support. Contrary to what expected there was no significant difference between women who had been i n the US more than ten years and those that had been here 10 years or less. The shared experience of cancer survivorship Findings suggest that regardless of country of or igin it is possible to collectively speak of Latina immigrants within the context of ca ncer survivorship. Regardless of nationality or immigration status the women intervi ewed faced similar challenges. As is illustrated by the case illustrations of Dafna, who was here legally form Cuba, and Agustina, who was undocumented from Colombia and th e experiences the participants shared it appears that there were more similarities than differences within this context. I acknowledge the heterogeneity of the various ethnic groups that fall under the Hispanic label and suggest that there is a need to disaggreg ate these groups when looking at disease treads (Martinez-Tyson et al 2008). However as the data suggest it is possible to talk about Hispanic/Latino culture within the co ntext of this study.
190 Mexican, Cuban, Puerto Rican and other immigrants from various countries in Latin American and Spanish-speaking Caribbean come from distinct cultures, but those cultures have a shared heritage which stems from Sp anish colonization, Spanish language (with regional variations), and religion ( e.g., Catholicism) and the experience of having lived as minorities in a very race conscious United States (Flores-Ortiz 2000; Snchez Ayndez 1998). Chavez et al reports that th e main differences between Latinas, European American and physicians his study were primarily driven by immigration (Chavez et al 1997b). Regardless of cou ntry of origin, Latina immigrants shared many more beliefs about breast cancer than t heir American-born Latina counterparts (Chavez et al 1993b; Hubbell et al 199 6a; Hubbell et al 1997). Based on seven years of experience working with Latina breas t cancer survivors, it is possible to state that even though Latina survivors may differ in nationality, they go through similar processes (immigration) and experiences (cancer dia gnosis) that make it possible to focus on their shared experience as Latina immigran t cancer survivors. Strengths and limitations The following paragraph details the limitations an d strengths of this study. Studies that use purposive and snowball sampling te chniques are considered nonprobability studies and thus have low external vali dity. In addition, participants were recruited through community networks and this may p ose possible biases, thus limiting the generalizability of the findings outside this s tudy population. The index/scale used to assess social support was developed by the researcher and thus it is not possible to compare the social s upport findings to other studies that have not used this scale. Another limitation relate d to the measurement of social support in this study was the items that were not applicabl e to some of the women and thus were coded as missing. The psychometric properties of th e social support scale could not be thoroughly evaluated (e.g., through test/retest) th us the results should be interpreted
191 with caution (See Chapter 6, Recommendations for Fu ture Research). Some of the concepts that emerged from the in-depth interviews such as the concept of resignar were difficult to translate to English. However, th is did not pose a problem in developing the Spanish structured questionnaire that was admin istered. Due to the cross-sectional design of this study I was not able to explore or to follow women prospectively. The data does not provi de information on how support needs and relationships might change throughout the disease continuum from diagnosis, to treatment, and finally through long term survivo rship. Another study limitation is the sample was chosen based on participant availability and level of access. Furthermore, by limiting the sample to immigrant women in West C entral Florida, the findings may not be generalizable to US born Latinas or to Latinas i n other parts of the country, such as California. While over 10 Latin American nationalit ies were represented in the study sample, with the exception of Puerto Ricans, the nu mber of participants from the other countries was small and thus intergroup variation c ould not be thoroughly explored. Another limitation is the sample size (n=60) used i n Phase II. Due to the small sample size I was only able to run descriptive statistics and conduct univariate and bivariate analysis to assess associations between variables. Advanced statistical techniques, such as regression, should not be used on small sam ple sizes. Time and lack of funding were also limitations for this study. While time co nsuming some of the advantages of doing face to face interviews and orally administer questionnaires is that one is able to probe more deeply and that individuals who may not read well can be included (Bernard 2002). Further the use of mixed methods allowed for data triangulation which provides high internal validity. In summary, despite the limitations described in t he paragraphs above the researcher is able to address the study research ob jectives which are to contextualize the cancer experience of Latina immigrants diagnose d with breast cancer, to explore the
192 sociocultural domains of social support and identif y the cultural and structural factors that influence this construct. Furthermore, the res earch process and lessons learned is invaluable and contributes to the doctoral training of a Latina doctoral student. Study findings provide a foundation for future research a nd a career that will be dedicated to addressing health disparities and Latino psychosoci al and healthcare needs. The next chapter delineates suggestions for future research, recommendations for communitybased organizations, clinical practice and psycho-o ncology. The application of research findings at the local level is also presented. In a ddition, the anthropological significance of this study is provided.
193 Chapter 6: Recommendations and Conclusion Introduction In this research the qualitative data derived from the key informant and in-depth interviews was used to contextualize the cancer exp erience of Latin American immigrant women diagnosed with breast cancer. Data was also u sed to develop an emic perspective of social support and to identify the r elevance of spirituality/faith, prececia and family. This chapter begins with a brief overvi ew and summary of research findings. This is followed by suggestions for future research Thereafter, recommendations for community-based organizations, clinical practice, a nd psycho-oncology are provided. Information learned from the interviews also sugges t that issues related to disclosure, communication, womens role and protecting family a lso figure prominently in womens lives and may be additional sources of stress. The quantitative data identified some of the cultural norms and structural factors that infl uence social support. Contextualizing social support, stress and non-disc losure Drawing from a number of theoretical assertions, p ersonal observations and the literature, I proposed a conceptual model to explai n how cultural and structural factors might influence social support. Specifically, the f ramework I proposed suggested that cultural norms and expectations about gender roles, language, particularly English proficiency, chronic stress and length of time in t he US would influence social support. The trends and associations that emerged from the r esearch are more complex than initially hypothesized. And while findings, in part confirm the proposed conceptual model, they also suggest it might be worth rethinki ng. For example, the stress buffering model of social support may be diffused for Latina immigrants diagnosed with cancer as
194 disease-related stressors may seem minor compared w ith the larger social problems (SES, immigrations status, poverty, distance from f amily) Latina immigrants may encounter on a daily basis. Furthermore, in the cas e of Latina immigrants, this model may not capture the complexity and intricacies of s ocial relationships and cultural norms guiding social interactions; where sources of suppo rt, such as family can also be sources of stress. Findings from this study sugges t a need to refine prevalent conceptualizations of social support to include the experience of Latin American immigrant women. The findings that relate to disclosure deserve fur ther discussion. Women delineated not sharing how they really felt physica lly/emotionally with their family during treatment and the stress telling their family about their diagnosis caused them. As previously mentioned, the topic of disclosure emerg ed, in part, from participants discussion about the things that caused them stress Based on comments women made during the interviews and on personal observations about who women did and did not disclose information to, a possible model began to emerge. Women mentioned not wanting to take their young childrens innocence aw ay, or burden their adult children who had their own lives, family and problems to dea l with. Key informants observed that not communicating cancer-related issues with their children, regardless of their childrens age, was a much bigger issue for the Lat ina cancer patients than for cancer patients from other ethnic groups. Latin American i mmigrant women also revealed not wanting to tell or burden their parents, who were o lder and or were sick themselves and participants worried that negative news would cause them additional worry, stress and/or possibly make them ill. However, one of the limitat ions of this study is that I did not ask participants specifically who they did/did not tell and why. A few participants mentioned talking with their siblings, primarily sisters, or female cousins. It is also difficult to determine who women disclosed information to becaus e I did not ask, for example, if
195 they had siblings or living parents. Had I asked th ose questions, I might have been able to more fully understand if there was a pattern in who they told and if it made a difference. Thus, if a participant did not mention a sister per se it could be because she did not have one, not because she chose not to tell her. I was not able to explore this in detail and suggest this is an area that warrants fu rther study. Beliefs and communication practices regarding nondisclosure are related to broader cultural aspects of what is expected of wom en, by men and by family members. Issues relating to nondisclosure also illustrate th e saliency of cultural norms related to womens roles, such as ama de casa ( homemaker), and Latina immigrants orientation toward the home and family (Abraido-Lanza 2004b; Sa nchez-Ayendez 1988; SanchezMoreno 2004). Within this model, non-disclosure may serve to protect the family and keep the tranquilidad (tranquility/harmony) in the household (i.e., redu ce household stress). Protecting the family from additional dise ase-related stressors takes precedence over womens personal/individual needs. Thinking ba ck, when I asked participants what caused cancer; stress was the second item on the li st, behind poor nutrition. This may be one of the reasons participants do not disclose; they may, in part, be protecting their family from stress and thus preserving their health Thus, findings suggest that we may need to reconsider the stress buffering model of so cial support as it applied to Latina immigrant women. While emotional support from famil y and assistance with instrumental/tangible needs during treatment for ca ncer were associated with the positive side of social support they are also be as sociated with the stress caused by having to burden others with your problems; instead of buffering stress, seeking support may also contribute to it. Most of the literature on non-disclosure of cancer information centers on 1) patient/ provider communication, i.e., how truthful the physician is with the patient about his/her diagnosis and prognosis (Blazekovic-Milakov ic et al 2006; Lapine et al 2001;
196 Mystakidou et al 2005) and 2) on family/ patient co mmunication, i.e., where the family does not disclose cancer information to protect the patient from knowing his/her diagnosis and prognosis (Hallenbeck & Arnold 2007; Jiang et al 2007; Surbone 2006; Tuckett 2004) and the cross-cultural implications o f these. The latter has been reported most frequently among Japanese, Chinese, Taiwanese and other Asian and non Western groups (Andresen 2001; Fielding et al 1998; Harris et al 2003a; Mobeireek et al 2008; Tang & Lee 2004; Younge et al 1997). Mitchell (1998) reports that across ethnic groups both cancer patients and physicians relate c omplete cancer disclosure from the physician to the patient is undesirable (Mitchell 1 998). Further, the diagnosis of cancer affects family structure and dynamics and families in an effort to protect patients from despair exclude the patient from the information ex change (Mystakidou et al 2004). However, I did not come across any literature that specifically discussed issues surrounding patients non-disclosure of their disea se to their family nor the implications this might have on social support. Thus there is a need to explore non-disclosure within the context of patient/family communication from th e patients perspective, who and why patients tell/do not tell and the possible effects non-disclosure might have on social support, stress, and psychosocial well-being. One aspect of the social support data from the str uctured interviews that struck me was the percentage of women who stated they did not have specific types of support. Normative role expectations about who shou ld provide support may be one of the reasons that explain the lack of support found. For example, out of the 26 women who had children, 82% stated they did not have some one to help them with childcare. Participants may have sought support from role appr opriate providers and may not have had it. Participants identified older daughters, mo thers, sisters and other female relatives as sources of support who would help care for child ren and maintain the household if the woman was ill. However, Latina immigrant women may be less inclined to ask others for
197 help if she is here in the United States and her tr aditional sources of support are back home in her native country. Results point to the un ique immigration-related circumstances surrounding the giving and receiving of support; such as the interdependence and connection between women diagno sed with breast cancer in the United States and their family and friends in their native country. Suggestions for future research We need to expand our understanding of the types o f emotional and informational support needed and used by ethnically diverse groups who may have fewer opportunities to interact with or access ment al healthcare professionals and rely more on informal support networks. Further, as find ings from this study indicate we need a more in-depth examination of social support to un derstand the cultural and social contexts, as well as the cultural assumptions and e xpectations, that define how support is given and received among different ethnic groups (e.g., Haitians, East Indians) living in the United States. Many social support studies l ook at the frequency of contact or focus on very general measures of perceived support Few have addressed the actual behaviors/actions that people engage in when giving /receiving support or the types of support that are important to individuals from dive rse backgrounds (Kagawa-Singer & Wellisch 2003; Wellisch et al 1999). Study findings lay the foundation for future rese arch. We need to examine sociocultural factors and resources that enable Lat inas diagnosed with cancer to maintain valued social roles in the family and comm unity. As study findings illustrate, we need a better understanding of the impact of cancer upon the family of Latina cancer survivors. For example, do cultural beliefs about n ot burdening the family and cultural norms about communication apply to others in the fa mily? Do the daughters, sons, mothers, husbands, and/or parents of Latinas diagno sed with cancer also keep a strong happy face and keep their worries and personal conc erns to themselves to protect the
198 cancer patient? If so, how does this affect family support needs and social relationships within the family? How are familial relationships t ransformed by the cancer experience? We also need to examine the social support needs an d cultural assumptions, beliefs, and values that constitute social support among spo uses/male partners of Latina cancer patients. How does their wives cancer diagnosis af fect their social roles and responsibilities? This information can be used to d evelop supportive services and educational interventions for spouses and caregiver s. There is a dearth of information on social support among Latino men with cancer. What a re the sociocultural factors that influence social support among Latino men diagnosed with cancer? What are their social support needs, and do they have similar beliefs reg arding gender roles? What are the cultural norms and beliefs that guide from whom Lat ino men can give and receive social support? It would be worthwhile to conduct a measurement st udy to refine and evaluate the psychometric validity and reliability of a cult urally informed social support scale for Latinas that includes support items of the nonverba l type, like spirituality, prayer, and precencia which are not normally included in standardized soc ial support scales. It might also be of interest to explore the social networks of immigrant Latina cancer survivors in relation to social support and psychosocial well-be ing. Further, a comparative study of social support between Latina cancer patients in US and their counterparts in their native countries would be beneficial. For example, compari ng social support between Puerto Ricans living in the Mainland to Puerto Ricans livi ng on the island would provide valuable and more in-depth insights on the influenc e of migration on social support and social relationships. A future study might also use pile sorts, rank order and cultural consensus analysis (Dressler 1991) to explore socia l support among a larger sample of Latino ethnic groups to explore intracultural varia tions and determine whether there is indeed a shared cultural model of social support.
199 Situating the study of breast cancer and social sup port within the anthropological context As discussed in the Chapter 2 Literature Review an thropology has made several contributions to our understanding of the cancer ex perience through the use of intrinsic anthropological insights, orientations and methodol ogy. In the following points I will discuss nine ways this research is intrinsically an thropological. First, through the use of ethnography the data pro vide a holistic view of the social support and the breast cancer experience and places this experience within the broader cultural and structural context. Second, the use of ethnographic methods also provi des an emic view of breast cancer. In contrast, most of the public health and psychosocial literature on this topic is written from an etic perspective. Adler (1 999) states that this is one of the strengths of anthropology; participants can describ e their beliefs, practices and experiences using their own words (Adler 1999). Lat ina breast cancer survivors subjective views (emic views) are valued and they a re regarded as experts on their own experiences. Third, exploring the social support within the con text of immigration allows for a better understanding of local realities and the str uggles Latinas diagnosed with beast cancer encounter through their survivorship t rajectory. Fourth, the combination of qualitative and quantit ative methods is used in a complementary fashion and serves to triangulate res earch findings. Furthermore, the data from the qualitative in-depth interviews i nform the wording, questions and items used in the structured questionnaire, add ing to the questionnaires cultural relevancy. According to Hahn and Inhorn, w hile qualitative and quantitative methods are used in other fields the c ombination of the two is
200 anthropological (Hahn & Inhorn 2008). In addition, instead of using an existing scale (e.g., social support, chronic stress) I crea ted culturally informed scales that included items in-depth interview participants identified as relevant. The way the social support scale was formatted also enabled me to probe deeper about who provided support (e.g., gender). Fifth, anthropology gives credence to the world vi ew and lived experience. The qualitative data exemplify the lived experience of breast cancer and the stressors that influence social support among Latinas who hav e been diagnosed with this disease. Sixth, over several years of local fieldwork and p articipant observation in the community provide innate understanding and nuances of the issues and social support needs and informed the questions asked. Seventh, rapport is critical part of anthropologic al research (Hahn 1999). It was crucial that I build rapport with the women intervi ewed, especially given the sensitivity of the subject matter. Eight, the theoretical orientation that guides thi s research is grounded in critical biocultural anthropology, where in relation to brea st cancer, the meaning of social support and the acts of giving and receiving assist ance are explored within the larger contexts that include the cultural beliefs, social environment and chronic stressors. Finally, applied medical anthropology is concerned with putting research into practice and works to address health problems and i mprove the life and well being of individuals and communities. Thus, include d in this chapter are recommendations for action which illustrate how fin dings from the dissertation
201 research can be used to inform community-based orga nizations, clinical practice and psycho-oncology. Recommendations for community-based organizations, clinical practice, and psycho-oncology This study has practical applications for health p rofessionals and support providers that develop programs and provide service s to Latina immigrants. The experience of migration and adjustment to the Unite d States and the U.S. healthcare system is especially relevant to researchers and pr actitioners working with immigrant populations and womens health issues. We need to c ritically consider each womans history, the influence of immigration on her family and the influence of the social environment on her psychosocial well being (FloresOrtiz 2000; Trueba 1998). An understanding of the sociocultural factors that inf luence social support and the needs and experiences of Latinas immigrant breast cancer survivors is an important part of service provision, specifically ones related to edu cation, information dissemination, and provision of culturally relevant psychosocial servi ces. The information derived from this research can provide new perspectives for social wo rkers, program leaders, mental health practitioners, and health educators concerne d with assisting Latino cancer patients in stress management, addressing psychosoc ial needs, and navigating the healthcare system. Recommendations include: 1. Consider the cultural dynamics and complexity of the Latino family, especially when tailoring or adapting cancer survivorship educ ational materials and/or psychosocial or mental health programs for Latinas. This suggests that we need to more critically look at the Latino family dynami c and the concept of familismo (Huerta & Macario 1999). We must consider the cultu ral dynamics and complexity of the Latino family, especially when ta iloring cancer-related
202 resources to improve the quality of life for Latina s. Core Latino family values and relations must be considered during the production and/or organization of cancer survivorship educational materials and psychosocial or mental health programs for Latinas. Simply translating materials and putti ng a Hispanic family on the front cover, for example, may not address the underlying and overlooked needs and issues. There is a need to have a better understand ing of how cancer affects the family unit; to must look beyond the individual tha t is affected by cancer. 2. Respect cultural norms and beliefs regarding Lat ina patients choice to disclose cancer diagnosis, personal worries, and concerns to their family but understand the added burden and stress this may cause immigran t Latina cancer patients and influence the availability of social support. 3. Develop culturally and linguistically appropriat e venues where women can express themselves. Thus, providing Latina cancer p atients with venues, like support groups, may give women the opportunity to e xpress themselves, without fear or guilt that they are burdening their family, with others who have gone through a similar experience. 4. Take into account and acknowledge the importance of spirituality and prayer. When designing psychosocial interventions, out of r espect for peoples religious beliefs, we separate personal beliefs and religion and are careful not to promote one belief system over another, but we need to ackn owledge that spirituality and prayer are part of the Latino cultural fabric and c onsider their importance in developing such programs. 5. Consider gender roles and in which ways they inf luence the kinds of support provided by men and women when developing education al programs and support services for Latina cancer patients. Consid er that Latina immigrant cancer patients consider other women (e.g., cancer survivors) to be trusted
203 sources of support and information. Thus, a peer-to -peer support program, which matches newly diagnosed Latina cancer patients with trained long-term survivors, may help Latina patients navigate the he althcare system and provide them with needed support and information. 6. Develop educational materials and programs that are inclusive of men/spouses that provide information about the physical and psy chosocial impact of cancer and of the short and long term needs of women who h ave undergone cancer treatment. 7. Educate family and caregivers of Latina immigran ts diagnosed with breast cancer about the shortand long-term physical and psychos ocial effects of cancer and its treatment. This will inform families and caregi vers, teaching them about cancer patients needs so they may better understan d what their loved ones are experiencing. Further, family members may learn wha t they can do to be supportive without patients feeling like they are b urdening their families or putting their own needs before their families. 8. Recognize that decisions about treatment and com munication can be influenced by structural limitations and should be understood within this context. 9. Outreach and give special attention to Latina ca ncer patients who have immigrated to the US alone and are perhaps the most vulnerable to stressors and have the least support. Understanding how Latin a immigrants cope with challenges and seek help has implications for enhan cing, and perhaps informing, the forms of support delivery, as well as designs o f social support programs. 10. Be aware of the importance of establishing rela tionships and building rapport when working with vulnerable or underserved populat ions. This may involve a lot of person time and outreach. When doing research or developing psychosocial
204 programs involving and concerning Latina immigrants allocate time and funds to support relationship building through phone calls t o the patient and follow-up. 11. Consider verbal and non-verbal forms of social support when developing support programs for immigrant Latinas. We ought to impleme nt simple gestures such as calling, bringing soups/food(s) and/or small gifts, which are culturally appropriate ways of showing support in Hispanic culture, in ord er to demonstrate that we are aware of Hispanic culture and Latinas social suppo rt needs. 12. Recognize that regardless of time in the U.S., Latina immigrants maintain close ties and frequently communicate with family and fri ends in their native countries. Thus, enabling Latina immigrants (e.g., providing c alling cards) to communicate with family and friends during cancer treatment(s) might be a way of providing support. 13. Provide patient education and information in th e patients own language. This may entail having translators for patients who spea k a little English, especially in an oncology setting, where medical jargon and compl ex terms are often used to explain and describe treatment plans. Spanish-speak ing patients should be offered an interpreter, even if they speak a little English and feel they can get by with their level of proficiency. Providers are one of the main sources of informational support for cancer patients; thus it is crucial that patients are able to understand and communicate effectively with their d octors. 14. Provide Latina cancer patients with information about cancer treatment, as well as the shortand long-term psychosocial issues (e. g., sexuality and intimacy) that may arise due to cancer treatment. We need to make sure these kinds of information(s) are more readily accessible. We cann ot assume that because information might be available online that it is ac cessible to immigrant Latina patients and their caregivers.
205 15. Make available information about community reso urces that may be able to provide financial assistance, low cost medications, free prosthesis, transportation, and existing support programs. We n eed to develop a Spanish language resource guide that outlines, in detail, w here patients can find these kinds of assistance and resources. 16. Develop cross-cultural training programs that p rovide knowledge and skills needed to prepare mental health workers, psychologi sts, program organizers, and counselors to work with multicultural populatio ns and address Latina patients psychosocial needs with respect, sensitiv ity, and in a culturally relevant manner. 17. Increase the pipeline of bilingual and bicultur al mental health workers, psychologists, counselors, and patient navigators. 18. Inform policy makers of the need to include men tal health and counseling services that address the psychosocial issues encou ntered by cancer patients as part of total cancer care. Application of preliminary findings at the local le vel This paragraph details how I have applied some of the knowledge and information I have learned from this study to my wo rk in the community and with LUNA, Inc. First, the dissertation research process has d efinitely shaped my understanding of what it means to be a Latina diagnosed with cancer, and what it is like to navigate the healthcare system without knowing the language and/ or with limited resources. The results of this study affirm the need for organizat ions, like LUNA Inc., that work to provide education and support to Latinas diagnosed with cancer. Grassroots and community organizations that bring women together h ave potential become especially important to Latinas and may provide a safe haven f or women to express themselves freely without the fear of burdening their families In addition, they provide information
206 about cancer and its treatment that non-English spe aking Latinas might not get from their providers. Since data collection occurred ove r a 12-month period, I had time to digest the information as well as apply the knowled ge gained to the activities I planned and coordinated for LUNA, Inc. For example, data fr om the in-depth interviews reveal the dire need for information on sexuality and inti macy during and after cancer treatment. Thus, we included a session on sexuality and intimacy at Camp Alegria, a three-day retreat in April of 2008, lead by an onco logy nurse for Latinas diagnosed with cancer. Forty-eight women attended this session. At the monthly support meeting in June, the group discussed sexuality and intimacy. T he session was geared towards couples and women were encouraged to bring their sp ouses/partners. We added a caregiver workshop the last day of Camp Alegria, wh ich was lead by a professor from the School of Social Work at University of South Fl orida. Further, as a non-profit organization LUNA, Inc. i s in its infancy; it is currently applying for 501-C3 tax-exempt status. LUNA, Inc. h as a broader vision and hopes to provide assistance, disseminate information, and de velop culturally-relevant interventions that will empower cancer survivors an d their families. It is my hope that the knowledge and information obtained from my disserta tion will be applied to further this vision and develop programs and services that will be anthropologically informed and thus better able to address the support needs of Hi spanic cancer survivors in West Central Florida and beyond. Conclusion and contributions to anthropology As stated in the literature, Cohen argues for a co ntextual understanding of social support (Cohen 2004a). Further, the work by Dressle r and Jacobsen illustrates how the social environment in which support occurs substant ially influences the nature of support and its effects on health (Dressler 1985; 1991; Dre ssler et al 1986; Jacobson 1987). Findings shed light on the cultural and structural processes that mediate social support
207 among Latin American immigrants diagnosed with brea st cancer. The mediating effects of support are embedded within the larger, structur ed social and cultural contexts; these in turn help to shape the nature and outcomes of su pport. As Pearlin states, As in virtually all instances where the well-being of peo ple is at stake, personal problems overlap with social problems and personal support s ystems are shaped by social resources (Pearlin 1985: 59). Breast cancer not only affects individuals, it imp acts their social relationships, finances, work, and social roles. Study findings pr ovide a rich and in-depth understanding of social support, contextualize the breast cancer experience, and illustrate the stresses and burdens of cancer among Latin American immigrant women diagnosed with breast cancer. This research contrib utes to two areas of inquiry: medical anthropology and cancer survivorship. Study finding s contribute to anthropology by adding to our understanding of the socio-cultural a nd structural factors that influence social support within the context of immigration an d demonstrating the relevance of using a biocultural framework to understand the com plexity of constructs such as social support which are culturally embedded and occur wit h in the larger social environment. Thus, to truly understand the factors that mediate social support one must look at both the cultural construction of stress and social supp ort as well as political economic structure in which support occurs. As Castro and Fa rmer (2007) delineate that From the onset, anthropological studies of health have been contextualizing, insisting on the embeddedness in the social world of all that may be observed or elicited (Castro & Farmer 2007: 42). Anthropological insights elucidat e the local realities and lived experience of Latin American immigrant women diagno sed with breast cancer. Anthropology has always been interested in social o rganization and human relationships, and the findings from this study add to this literature (Brettell 2000). In sum, this research enhances our understanding of ho w social support relationships may
208 be transformed through the process of migration to the United States in relation to the cancer experience of immigrant Latina breast cancer survivors. Furthermore, findings also inform us about the types of social-support re sources Latina immigrant breast cancer survivors need and use to adjust and adapt to cancer and its long-term effects. Conceptually, it contributes to our understanding o f how social environment(s) and processes of migration influence social support.
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249 Appendix A: Interview Guide for Key Informants Date: __________ Interviewed by: __________ Location: __________________ County: _____________ Describe the rational for the project and provide a brief overview of the project. The purpose of my study is to help us understand how so cial support relationships are transformed through the process of immigration and to learn about the support needs of Latinas during the diagnosis and treatment of breas t cancer. I am also interested in understanding the challenges and strength of Latina cancer survivors and how cultural beliefs and expectations contribute to Latinas perc eptions of social support. The interview will take approximately 60 minutes. W e can stop anytime. Your participation is voluntary and anything you say to me will be keep kept confidential. Because what you have to say is so important to me, I would like to tape record our interview. Is that OK with you? (If Yes: Press Record): For our records then, pleas e state if it is OK to tape record our interview? Thank you. Im going to take some notes as we tal k as well, so I dont forget anything important. Today is ________; organization ____________. (If No): OK, and thanks. I will be taking notes as we talk, because I dont want to forget anything that you tell me. Key Informant Gender: Male Female Do you consider yourself Hispanic/Latino? Yes No What languages are you fluent in writing? What languages are you fluent in speaking? What is your educational background? What do you do for a living? How long have you been doing ________? Thank you, now I will begin with questions that are a little broader and then ask questions that are a little more specific. What do you think are the biggest problems that His panics in (__________) face? County/City What are the strengths of the local Hispanic/Latino community?
250 Appendix A: (Continued) What health issues do you think are the most import ant for Hispanics/Latinos? Besides doctors or nurses, who can Hispanic people go to when they have an illness here? What are some of the changes Latinos/Hispanics expe rience when they immigrate to the US? How do these changes affect their social relations hips? The family? Resources? What are some of the beliefs in Hispanic culture ab out cancer? How do you think cancer affects Hispanic immigrants ? How do you think cancer affects the Hispanic family ? Do you work with/provide services Hispanic cancer p atients/survivors? Yes No Based on your experience, about what percent are: ____ women/ _____men that you work with directly or indirectly. Are there any differences between the Hispanic men and women you see (gender differences)? If yes, can you describe some of these differences to me? Can you give me an example? From your experience are there different cultural e xpectations for men and women diagnosed with cancer (family roles, sick rol e, and caretaker role)? What are the issues/challenges Hispanics diagnosed with cancer often face (health care, access, language)? Do Hispanic men and women diagnosed with cancer fac e similar issues/challenges (e.g., with work, family, care etc )? Please descri be and can you give me some examples? How do you think Hispanic women, in general, percei ve cancer? Breast cancer? How do these perceptions change among Hispanic women who a re diagnosed? What are some of the terms Hispanics use to talk ab out cancer? Breast cancer? Tell me about your experience working with Latina b reast cancer survivors/patients. What is most rewarding about the work you do? What is the most challenging thing about the work you do? Can you tell me about the different psychosocial an d or mental health services and or support programs available for breast cancer patien ts?
251 Appendix A: (Continued) You mentioned _______, are these programs services used by Latinas? What might be some of the reasons why Latinas might not use support programs? From your experience are their any cultural beliefs /taboos that might affect Latinas use of these psychosocial/ mental health se rvices or support programs? Are there any other barriers that might affect Lati nas use of these psychosocial/mental health services or support prog rams? What can we do to make these programs and services more available to Latinas and non-english speakers? Hispanics are from various nationalities, do you se e differences: Between the Hispanic subgroups (e.g., Cuban, Mexica n, Puerto Rican). If yes, describe? Can you give me some examples? By immigration status (e.g., those that are here le gally and those that are not). If yes, describe? Can you give me some examples? Between those that speak English and those that don t? If yes, describe? Can you give me some examples? Between Latino/a men and women? If yes, describe? Can you give me some examples? To recap, the purpose of my dissertation study is t o help us understand how social support relationships are transformed through the p rocess of immigration and to learn about the support needs of Latinas during the diagn osis and treatment of breast cancer. I am also interested in understanding the challenge s and strength of Latina cancer survivors and how cultural beliefs and expectations contribute to Latinas perceptions of social support. What else do you think I should thi nk about as this study moves forward? Is there anyone else you think it might be good for us to talk to? (Organizations, social workers, support group facilitators etc ).
252 Appendix B: English and Spanish In-depth Interview Guide Hello, my name is Dina Martinez. I am a student at the University of South Florida and Im working on a study about the needs of Latina breast cancer survivors who were born in Latin America or in the Caribbean and live here now Would you be willing to answer some questions about this topic? NO: Im sorry you wont be taking part in this stud y. Thank you for your time. YES: Thanks. Before we begin, Id like to make sure that you understand what we are going to do. Heres an information sheet with detai ls about the study [provide informed consent]. Id like to talk with you for about an ho ur about these very important womens health issues and your experience with breast cance r. Everything you say will be kept confidential and you dont need to answer any quest ions you dont want to. Because what you have to say is very important to me, I will tak e notes during our conversation. I will be tape recording the interview session because I don' t want to miss any of your comments. Please take a minute to look at the information she et and I can answer any questions you might have. Do I have your permission to tape recor d the interview? [ Pause ] Do you have any questions? [Address any questions o r concerns.] Are you still interested in taking part?__________ NO: Im sorry you wont be taking part in this stud y. Thank you for your time. YES: OK lets begin DEMOGRAPHICS: To begin, I would like to know a litt le bit about you. Date: ID number: How old are you:
253 Appendix B: (Continued) In these next few questions, Id like to learn your opinions about important health topics, including womens health issues. Your thoug hts about these issues are important to me, and there is no right or wrong ans wer (Suggested prompt to use as needed to build lists: Is there anything else you can think of?) What are the most important things in your life? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the things a woman should be: A woman shou ld be_________? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. What are the most important things a woman can do? The most important things a woman can do are:_____ 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the different roles and responsibilities a woman has? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the ways a person can show someone who is sick or recovering from illness (e.g. breast cancer) that they love, understand and/or ca re about them? 1. 6. 2 7. 3. 8. 4. 9. 5. 10.
254 Appendix B: (Continued) List all the ways a person can help/aid someone who is sick or recovering from illness. 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the people that can provide financial/mate rial assistance to someone who is sick? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the people/things that can help some one m ake a decision about their health.? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the things that make a doctor/physician a good doctor? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. The following questions are about your childhood an d about what people do when someone is sick. 1. Thinking back to your childhood, what were some of the things you learned about when people were sick or ill? a. Did men and women do different things to help ou t when someone was sick or ill?
255 Appendix B: (Continued) i. What happened when your dad or a male person was sick? 1. What was expected of them? 2. Who took cake of them? ii. What happened when your mom or a female person was sick? 1. What was expected of them? 2. Who took cake of them? 2. How did your family manage hard times or stressf ul events? Now I am going to ask about your experience when yo u came to the US? 3. What was it like when you came to this country? 4. Why did you move/come to the United States? 5. Who came with you/ who stayed behind? 6. Do you still have family and friends back home? a. How often do you communicate with you family bac k home? b. Do they depend on you (e.g., for money, gifts, m edicines)?
256 Appendix B: (Continued) c. Did you tell them about your diagnosis? i. Why or why not? ii. How did they react? iii. Did this cause you stress? 7. Where do the majority of your friends and family live now? 8. Do you think that being an immigrant/Hispanic af fects a persons access to health care or the treatment they receive? a. Why or why not? In the following questions I am going to ask you ab out your cancer experience, the support you received and about your immigration experience ? When you here the word cancer what comes to mind? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. What are the important things a woman who is diagno sed with breast cancer should know about? 1. 6. 2 7. 3. 8. 4. 9. 5. 10.
257 Appendix B: (Continued) What are some of the things you can think of that c an cause cancer? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the things that may affect the quality of treatment a person gets from the medical staff or doctor? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. List all the things a person with breast cancer nee ds assistance with. 1. 6. 2 7. 3. 8. 4. 9. 5. 10. 9. Tell me about your cancer experience? 9. What are the things that caused you the most str ess during the diagnosis and treatment for breast cancer? 10. Do you consider yourself to be a breast cancer survivor? a. If yes, when did you consider yourself to be a b reast cancer survivor? b. If no, why not? 11. As a woman how has cancer affected the was you see yourself?
258 Appendix B: (Continued) 12. In talking with women about their breast cancer experience the word support comes up a lot, can you tell me in your own words w hat support means to you? 13. Who or what has been helpful since your diagnos is? a. Why was that important to you? 14. Who or what are the things that have made this process difficult? 15. When you were first diagnosed with breast cance r, to whom or where did you turn for help, support and or information? a. How satisfied were you with the help, support or information you received? b. Was there any one you wanted to involve but coul d not? i. Why? 16. In what way is life different now then when you were first diagnosed? (Probe: Has it changed your roles within your house hold? In what way? How has your relationship with your spouse, children et c changed since being ill? 17. How would you describe the doctors/nurses who t reated you? a. Describe for me a typical day at the doctors of fice. b. Who was/is involved with helping you to make dec isions about the treatment you receive/d? 18. Who did you turn to for medical advice and/or i nformation (doctor, friends, internet, support group, counselor, healer, and/or clergy)? 19. How important is religion/spirituality to you?
259 Appendix B: (Continued) a. Did your feelings and beliefs about religion/spi rituality change after you were diagnosed with breast cancer? 20. How did your relationship with your friends and family change during your diagnosis and treatment? a. Did people behave differently towards you? b. Can you give me an example? 21. In what ways did breast cancer affect your acti vities with church, community or social groups? 22. What did you want family, friends, neighbors, and/or church members to assist you during your diagnosis and treatment? a. Was there any kind of support you wanted but did not get? 23. If you were working at the time how did your su pervisor or co-workers react to your diagnosis/treatment?
260 Appendix B: (Continued) DEMOGRAPHICS: Before we end, I would like to learn a little more about you. What language/s do you speak? ___ English Well / Not well ___ Spanish Well / Not well ___ Bilingual What language do you speak most at home? ___ Englis h ___ Spanish ___ Bilingual How old were you when you were first diagnosed? When were you diagnosed with breast cancer (Month/Year)? Where did you live when you were first diagnosed? ___ Same house/Same city ___ Different house /Same city ___ Different city ___ Different state ___ Outside the US What type of breast cancer were you diagnosed with? What kind of treatment did you receive? ___Surgery: __Lumpectomy, __Mastectomy, __Other:__________________ ___Chemotherapy How many sessions? _______ ___Radiation How many sessions? _______ ___Do/did you take any pills or medications after treatment? Yes No If Yes, what kind?______________ _____________________________ Did you have reconstructive surgery? ___ Yes ___ No
261 Appendix B: (Continued) Do you currently have health insurance, Medicare or Medicaid? ___ Yes ___ No Did you have insurance, Medicaid or Medicare when you were first diagnosed ? ___ Yes ___ No How many doctors did you see during your cancer treatment? ___ Yes ___ No In what language did you receive most of the information about your cancer care/treatment? ___ English ___ Spanish ___ Bilingual What languages to you prefer to receive your cancer care /treatment information in? ___ English ___ Spanish ___Bilingual What is the highest grade of school you completed? What is current employment status? ___ Full time ___ Part time ___ Retired ___ Homemaker ___ Unemployed looking for work ___ Unemployed through disability or illness What was your employment status when you were first diagnosed ? ___ Full time ___ Part time ___ Retired ___ Homemaker ___ Unemployed looking for work ___ Unemployed through disability or illness What kind of work do/did you do? Did you work while you were receiving your cancer treatment? What neighborhood do you live in? (name / zip code) What is your current household income? ___ 10,000 or less ___ 10,00130,000 ___ 30,001-50,000 ___ Greater than 50,000 ___ Dont know
262 Appendix B: (Continued) What was your household income when you were first diagnosed? ___ 10,000 or less ___ 10,00130,000 ___ 30,001-50,000 ___ Greater than 50,000 ___ Dont know What is your current marital status? ___ Married / Living with partner ___ Never married ___ Divorced ___ Widowed What was your marital status when you were first diagnosed? ___ Married / Living with partner ___ Never married ___ Divorced ___ Widowed How many children do you have? If you have children how old are they? Since you were diagnosed and treated for breast cancer, have you been responsible for the care of another person? ___ Yes ___ No How many people live in your household? What is your nationality/ where were you born? When did you come to the United States for the first time? How long have you lived in the U.S.? How long have you lived in Tampa? How do you like it here? How often do you travel back to your home country? Which of the following support programs have you used since you were first diagnosed with breast cancer? ___Look Good Feel Better ___ Y-Me ___ Reach to Recovery ___ Support Group: ___ Other: _____________________________ Thank you. Do you have anything else you would like to add or anything I should ask other women like your self that I may have left out.
263 Appendix B: (Continued) Hola, mi, nombre es Dina Martinez, Yo soy una estu diante en la Universidad del sur de la Florida y estoy haciendo una investigaci n sobre las necesidades de Latinas que han nacido afuera de los Estados Unidos pero viven aqu ahora y que han sido diagnosticada con cncer de seno. Usted esta interesada en participar en esta encuest a y responder algunas preguntas sobre este tema? NO: Lo siento, gracias por su tiempo. Si: Gracias, Antes de empezar yo quisiera estar seg ura que usted entiende lo que vamos hacer hoy. Esta hoja tiene informacin so bre los detalles de este estudio. [ provide information sheet]. Me gustara poder hablar con usted sobre temas importantes relacionados a la salud de la muj er y sobre su experiencia con cncer de seno. Tamara como una hora. Todo lo q ue usted me diga ser confidencia y no tiene que contestar una pregunta s i no quiera. Por lo que usted tiene que decir es muy importante para mi yo voy a tomar algunas notas durante nuestra conversacin. Tambin voy a grabar la encue sta por que no quiero perder u omitir algo que me diga. Por favor tome un minuto para leer la hoja de informacin. Djeme saber si tiene algunas pregunta s. Tengo su permiso para grabar la encuesta? [ Pause ] Tiene alguna pregunta? [Address any questions or co ncerns.] Todava le interesa participar? __________ NO: Lo siento, gracias por su tiempo. SI: Vamos a empezar Fecha: ID number: Que edad tiene usted?: Me gustara aprender su opinin sobre varios temas relacionado con la salud. Sus ideas y pensamientos sobre estos temas son importa ntes para m. No hay respuestas incorrecta, solamente quiero saber su ho nesta opinin.
264 Appendix B: (Continued) (Suggested prompt to use as needed to build lists: Hay algo ms?) Cuales son las cosas ms importantes en su vida? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Probe: If family is listed ask who constitutes fami ly? Dgame todas las cosas que una mujer debe de ser? / Una mujer debe de ser______: 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame las cosas ms importantes que una mujer pued e hacer? Las cosas ms importantes que una mujer puede hacer es:______? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame todas las responsabilidades y roles que tien e una mujer? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame todas las formas que una persona puede ense arle a alguien que esta enfermo o recuperndose de una enfermedad que son amados y queridos? 1. 6. 2 7. 3. 8. 4. 9. 5. 10.
265 Appendix B: (Continued) Dgame todas las formas que alguien puede ayudar/as istir a una persona que esta enferma o recuperndose de una enfermedad? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame todas las personas que deben proveer ayuda f inanciera/material a una persona que esta enferma. 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame todas las personas/cosas que pueden ayudar a alguien tomar una decisin sobre su salud. 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame todas las cosas que hacen a un medico bueno? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Las siguientes preguntas son sobre su niez y sobre lo que se debe hacer cuando alguien esta enfermo. 24. Pensando a su niez, que son algunas cosa que u sted aprendi sobre lo que hacer cuando una persona cuando estaba enferme or n o se senta bien?
266 Appendix B: (Continued) a. Los hombres y mujeres hacan diferentes cosas pa ra ayudar a la persona que estaba enferma? i. Que pasaba cuando su papa o un hombre en su fami lia estaba enfermo? ii. Que se esperaba de ellos? Su posicin cambiaba? 1. Quien los cuidaba? iii. Que pasaba cuando su mama o una mujer en su fa milia estaba enferma? iv. Que se esperaba de ellas? Su posicin cambiaba? 1. Quien los cuidaba? 25. Como su familia manejaba los momentos difcil o r estresante? Ahora le voy a preguntar sobre su experiencia cuand o vino a los EEUU? 26. Como fue su experiencia cuando llego a los EEUU ? 27. Por que usted se mudo para los EEUU? 28. Quien vino con usted? Quien se quedo atrs?
267 Appendix B: (Continued) 29. Todava tiene familia y amistades in su pas? a. Que tan a menudo usted se comunica con ellos? b. Ellos depende de usted (por ejemplo, para dinero medicinas, regalos)? c. Usted le hablo sobre su diagnosis? i. Por que? 1. Si le hablo sobre su diagnosis, como reaccionaro n? 2. Si no le hablo, por que? ii. Esto le causo estrs a usted? 30. Adonde es que la mayora de sus amigos y amista des viven ahora? 31. Usted cree que el ser inmigrante/nacido afuera de los EEUU afecta el la calidad y el tipo de tratamiento que una persona diagnostic ada con cncer recibe? a. Por que? Las prximas preguntas sern sobre su experiencia c on cncer. Cuando usted oye la palabra cncer que es lo que le viene a la mente? 1. 6. 2 7. 3. 8. 4. 9. 5. 10.
268 Appendix B: (Continued) Cuales son las cosas que una mujer diagnosticada co n cncer de seno debe de saber? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Cuales son algunas de las cosas que pueden causar c ncer? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Que cosas pueden afectar la cualidad de tratamiento para el cncer que una persona recibe de su medico/clnica? 1. 6. 2 7. 3. 8. 4. 9. 5. 10. Dgame todas las cosas con que una persona con cn cer del seno necesita ayuda. 1. 6. 2 7. 3. 8. 4. 9. 5. 10. 32. Cunteme sobre su experiencia con el cncer. 33. Cuales fueron las cosas que le causaron ms est rs durante su diagnosis y tratamiento de cncer? 34. Usted se considera como una sobreviviente de c ncer?
269 Appendix B: (Continued) a. Si si, cuando fue que usted se vio como sobreviv iente? b. Si no, por que? 35. Como mujer, como le afectado el cncer/ la form a que usted se ve? 36. Hablando con otras mujeres sobre su experiencia con cncer del seno la palabra apoyo es usada frecuentemente, en sus propias pal abras que significa apoyo para usted? 37. Que o quien asido til desde su diagnosis con c ncer? a. por que son importante para usted? 38. Que or quien han echo este proceso difcil? 39. Cuando primero le diagnosticaron con cncer, a quien o a donde usted fue para ayuda, apoyo y/o informacin? a. Que satisfecha estuvo con la ayuda, apoyo y/o in formacin que recibi? b. Haba alguna persona a quien usted quera involu crar en ese momento pero no pudo? i. Por que? 40. En que forma su vida es diferente ahora, en com paracin a cuando le diagnosticaron cncer? (Probe: Como ha afectado su hogar, su forma de ser, lo que usted hace, como su familia la trata? Como a cambiado su relacin con s us esposo y hijos?)
270 Appendix B: (Continued) 41. Como usted describira a los mdicos y enfermer as que le atendieron? a. Me puede describir un da tpico cuando tenia si ta con su medico. b. Quien le ayudo a tomar las dediciones sobre su t ratamiento? 42. Con quien hable o a quin fue usted para consej os o informacin medica? (doctor, friends, internet, support group, counselo r, healer, and/or clergy)? 43. Que tan importante es religin/espiritualidad p ara usted? a. Sus sentimientos y creencia cambiaron despus de la diagnosis? Como? 44. Como cambiaron las relaciones con su amistades y familia durante su tratamiento? a. Algunas personas se comportaron diferente con us ted? b. Me puede dar un ejemplo? 45. Como le afecto el cncer de seno en sus activid ades sociales? (church, community or social groups)? 46. En que le ayudo su familia, amistades, vecinos y compaeros de la iglesia? a. Usted quiso algn tipo de apoyo pero que no reci bi? 47. Si usted estaba trabajando durante su tratamien to como se comportaron su compaeros de trabajo/supervisor?
271 Appendix B: (Continued) DEMOGRAPHICS: Para cerrar quiero aprender un poquit o mas acerca de usted. Que idioma usted habla? ___ ingles bien / no muy bien ___ espaol bien / no muy bien ___ bilinge Que idioma habla usted en la casa? ___ ingles ___ espaol ___ bilinge Que edad tenia usted cuando la diagnosticaron con cncer? En que ao la diagnosticaron con cncer? (mes/ ao)? Donde viva usted cuando primero la diagnosticaron con cncer? ___ En la misma casa/misma cuidad ___ Diferente casa/ diferente ciudad ___ cuidad diferente : ___ estado diferente : ___ afuera de los EEUU : Que tipo de cncer del seno le diagnosticaron?
272 Appendix B: (Continued) Que tipo de tratamiento recibi usted? ___Ciruga: __Lompectoma, __Masectomia, __otra:__________________ ___quemoterapia Cuantas sesiones? _______ ___Radiacin Cuantas sesiones? _______ ___Tomo/toma algunas pastillas/medicamentos despus de su tratamiento? Yes No Si, Si, cuales?______________ _____________________________ Usted tuvo una ciruga de reconstruccin? ___ Si ___ No Usted tiene seguro medico, Medicare or Medicaid actualmente? ___ Si ___ No Usted tuvo seguro medico, Medicare or Medicaid cuando le diagnosticaron cncer? ___ Si ___ No Cuantos mdicos/doctores vio/tuvo usted durante su tratamiento? En que idioma recibi usted la mayora de informacin sobre su tratamiento para el cncer? ___ ingles ___ espaol ___ bilinge En que idioma preferira usted recibir informacin sobre su tratamiento para el cncer? ___ ingles ___ espaol ___ bilinge Cual es el ltimo grado escolar que usted completo?
273 Appendix B: (Continued) Que tipo de trabajo tiene usted actualmente? ___ Tiempo completo ___ Medio tiempo ___ Retirada ___ Ama de casa ___ Desempleada buscando trabajo ___ Desempleada por discapacidad o enfermedad Que tipo de trabajo tenia usted antes de ser diagnosticada con cncer? ___ Tiempo completo ___ Medio tiempo ___ Retirada ___ Ama de casa ___ Desempleada buscando trabajo ___ Desempleada por discapacidad o enfermedad Que tipo de trabajo tiene usted? Usted trabajo durante su tratamiento? En que barrio/rea de _____ vive usted? (name / zip code) Cuanto es el ingreso de su hogar en estos momentos? ___ 10,000 o menos ___ 10,00130,000 ___ 30,001-50,000 ___ Mas de 50,000 ___ No se Cuanto era el ingreso de su hogar antes de ser diagnosticada? ___ 10,000 o menos ___ 10,00130,000 ___ 30,001-50,000 ___ Mas de 50,000 ___ No se Cual es su estado civil, actual? ___ Casada / Con pareja ___ Soltera / nunca casada ___ Divorciada ___ Viuda Cual era su estado civil antes de ser diagnosticada cncer? ___ Casada / Con pareja ___ Soltera / nunca casada ___ Divorciada ___ Viuda Cuantos hijos tiene?
274 Appendix B: (Continued) Que edad tienen su hijos? Desde su diagnosis y tratamiento para el cncer, ha tenido usted la responsable para el cuidado de otra persona? ___ Si ___ No Cuantas personas viven en su hogar/casa? Cual es su nacionalidad? Donde usted naci? Cuando vino usted a los EEUU por primera ve? Que tanto tiempo (aos/meses) usted ha vivido en los EEUU? Que tanto tiempo usted a vivido en (ciudad) ________? Como le ha gustado vivir aqu? Que tan a menudo visita/ regresa a su pas? Usted a usado algunos de los siguientes programas despus de su diagnostico con cncer? ___Look Good Feel Better ___ Y-Me ___ Reach to Recovery ___ Grupo de apoyo: ___ Otro: _____________________________ Gracias, Tiene algo mas que quiera compartir con mi go or otras preguntas que puedo preguntarle a otras mujeres como usted?
275 Appendix C: English and Spanish Structured Question naire Hello, my name is ____________. This study is about the support needs of Latina breast cancer survivors who were born in Latin America or in the Caribbean and live in the United States now. Before we begin, Id like to make sure that you und erstand what we are going to do. Id like to ask you to answer questions about womens h ealth issues and your experience with breast cancer. What you have to say is very im portant to me. The first set of questions is about your breast cancer experience an d social support. This will be followed by questions about your background, educat ion, work, and your experience moving to the United States. The survey will take a bout 30-45 minutes to complete. If you need to stop and take a break please let me kno w. Your participation in this survey is voluntary. The re are no wrong or right answers to these questions. Everything you say will be kept co nfidential and you dont need to answer any questions you dont want to. Your respon ses and the responses of the other women being interviewed will be reported in a group format, as a whole and your responses will not be linked to your name. You shou ld not feel that there is any pressure to take part in the study. We dont know if you will get any benefits by takin g part in this study. But, by taking part in this study you may help us learn about the suppo rt needs of Latinas diagnosed with cancer and with information that we can use to deve lop a support programs in Spanish. We will not pay you for the time you volunteer whil e being in this study. If you have any questions, concerns or complaints a bout this study, call Dina Martinez at 813728-5895 or at 813-979-4291 or Dr. Linda Whiteford (dissertation advisor) at 813-9740801 Would you like to take part in this study? __ Yes __ No If no, thank you for your time. If yes, continue with the questionnaire and ask: Is this is a good time for you to talk uninterrupted? If no, please let me know when is a good time for m e to call you back. Date and time: __________________________ Before we begin can you please tell me: What is your age? ________ In what country were you born? ___________________________________ CANCER AND TREATMENT EXPEREINCE
276 Appendix C: (Continued) The following questions are about breast cancer and your treatment experience. Answer the following questions as best you can. In what year were you diagnosed with breast cancer? ______________ [If participant has been diagnosed with cancer prev iously, please list the year of the most recent diagnosis] At what stage was your breast cancer were you diagn osed? _____________ What kind of surgery did you receive? ___ Lumpectomy ___ Mastectomy ___ Other:__________________ ___ None/ Not applicable Yes No Comment Did you receive chemotherapy? Did you receive radiation therapy? Are you currently taking medications related to you breast cancer treatment (for example, such as arimidex or tamoxifen)? Did you have reconstruction surgery? Did you seek a second opinion when you were diagnosed? Did you have health insurance when you were diagnosed? Do you currently have any kind of health/medical insurance? At what clinics or hospitals did you get the majori ty of your cancer care? ___________________________________________________ ___________________ ______ [Interviewer: Probe: Community clinic (for example, Judeo Christian, Clinica Guadalupana), Moffitt Cancer Center, St. Josephs C ancer Institute, Morton Plant Mease, Lakeland Regional, MD Anderson in Orlando, U CH, Tampa General, Private oncologists, Other] When you received the cancer diagnosis did you live : ___ In the same house I live in now (Skip to questi on number #) ___ In a different house in the same city ___ In a different city ___ In a different state ___ Outside of the United States
277 Appendix C: (Continued) If you moved after you were diagnosed with cancer, why did you move? Have you participated in any of the following progr ams since you were diagnosed with cancer (Please check all that apply)? ___ Received counseling or talked to social worker ___ Reach to Recovery from the American Cancer Soci ety ___ Look Good Feel Better/ Luzca Bien Sientase Mejo r ___ Campamento Alegria ___ Grupo de apoyo: if yes, which one _____________ ___________ ___ Participated in a cancer walk or race ___ Otro: _____________________________ How long did you have to wait to see a surgeon or a medical specialist for care after you were diagnosed? ___ Less than a week ___ Two to three weeks ___ One to two months ___ More than two months Did you work during your cancer treatment? ___ Yes ___ No Now I would like to learn about your experience wit h your doctors. Please remember this information is not going to be shared with your doc tors. I will read a statement to you. Please respond, no, sometimes and yes. No Sometimes Yes Did you understand all the explanations and instructions you received from your doctor? Did you receive sufficient information about the treatment you received? Where you able to communicate your worries and concerns to your doctors? Did you feel your doctor listened to your concerns? Did your doctors give you information about where you could go for support? I am also interested in knowing how your experience of having cancer affects your life. Please answer the following questions based on your life at this time. Appendix C: (Continued)
278 Appendix C: (Continued) How would you rate your overall health? ___ Poor ___ Fair ___ Good ___ Excellent Cancer affects women in many ways, in order to bett er understand how cancer has affected your life I am going to ask about how dist ressing were the following aspects of your illness and treatment? Please answer no, not a t all, a little, or yes, a lot. No, not at all A little Yes, a lot Not applicable How distressing has your illness been for your family? Why? Has your sexual/intimate relationship with your spouse/partner been negatively impacted by your illness? Has your illness and treatment interfered with your employment? Has your illness and treatment interfered with your activities at home? Do you ever feel isolated because of your illness or treatment? Has the amount of support you received from others been sufficient to meet your needs during your illness and treatment? __ No __Sometimes __ Yes I want you to think about all the different things us, as women, are to others, the responsibilities and obligations we have and the ro les we play in peoples lives. I am going to ask you questions about these responsibili ties and obligations. If the item is not applicable, please say it does not apply.
279 Appendix C: (Continued) Women have shared that cancer sometimes affects the ir ability to do some of the things that women typically do. Please tell me if c ancer has affected your ability to do any of the following: Not at all A little Very much Not applicabl e Take care of children Educate your children Be sincere and honest Provide for your family Be caring and affectionate Take care of your husband/partner Take care of your parents Work (out side the home) Actualisarse / Profesionalisarse Maintain your home Now I would like to learn about how and when you co mmunicated with your family and friends about the cancer diagnosis. Did you tell your family about your diagnosis? ___ Yes, right away ___ Yes, but I waited to tell them ___ No, I have not told them about my diagnosis If you waited to tell them about your diagnosis, wh y did you wait? ___________________ ___________________________________________________ _____________ ____________ During your cancer treatment, how often did you kee p in touch with your friends/relatives in your native country via phone or email? ___ Never ___ More than once a week ___ At least once a week ___ At least once a month ___ Once every few months ___ Not applicable Were you able to communicate with your friends/rela tives in your native country as much as you needed to during your illness and tr eatment? ___ No ___ Yes
280 Appendix C: (Continued) If no, did this cause you additional stress or worr y? ___ No ___ Yes Have you ever felt you needed to keep a happy/stron g face during your cancer treatment? ___ No ___ Sometimes ___ Yes Have you ever felt you had to make a choice between working to support your family and following your treatment? ___ No ___ Sometimes ___ Yes In the following section, I will read you a few sen tences. Please remember there are no wrong or right answers. I just want your opinion, p lease tell me if you agree or disagree with the following statements. It is best not to burden family and friends with pe rsonal concerns/worries. __ Agree __ Disagree We have to accept suffering. __ Agree __ Disagree We have to resign ourselves to what life brings, yo u can not change what is going to happen. (Resignar) __ Agree __ Disagree Family needs should come before your own. __ Agree __ Disagree Everything is going to be as God wants/as God wills __ Agree __ Disagree
281 Appendix C: (Continued) Now, I would like to learn about your experience wi th your health care. Have you experienced any problems or difficulty with the following things? Please tell me yes or no. Yes No Comment Getting a mammogram (screening or diagnostic) appointments Finding a doctor or hospital that would provide cancer care to you Getting or maintaining your health insurance Making appointments for follow-up care Paying medical bills Paying for medications/ prescriptions Finding cancer information in Spanish SOCIAL SUPPORT People sometimes look to others for companionship, assistance, or other types of support. Please remember there are no wrong or righ t answers I just want to learn about your experience and the kinds of support you have a vailable. It is OK to answer that you do not have someone available. First, I am going to ask you, if you have the following kinds of support available to you if you need it? T hen, if you do, I would like to learn who gives you this type of assistance and support. For example, is it your husband, mother, father, female friend, etc ). After you list each p erson, I will ask you a few brief questions about them. For example, how old are they what language they speak etc. [interviewer: if they only list one person ask, is there anyone else, If the list more than 3 people ask them to select the top three. Do you have the following kinds of support available if you need it No Yes If yes, who? You do not need to tell me their name just their relationship to you, for example, daughter, son, friend, neighbor, etc ) [if participant list more than 3 people, ask them to select the top 3] What language do they speak? E: english S: spanish B: bilingual Where do they live? M: my country U: USA O: Other country What is their ethnicity? M: my country H: Hispanic O: other ethnicity not Hispanic How old are they?
282 Appendix C: (Continued) 1. 2. Someone who listens to you when you need to talk 3. 1. 2. Someone to confide in or talk to about your problems 3. 1. 2. Someone who is patient with you 3. 1. 2. Someone who encourages you 3. 1. 2. Someone to look over your pets if you were if you were hospitalized 3. 1. 2. Someone who understands your problems 3. 1. 2. Someone to help you if you were confined to bed 3. 1. 2. Someone to drive you to the doctor 3. 1. 2. Someone to help you fill out medical-related paperwork 3.
283 Appendix C: (Continued) 1. 2. Someone to go to the pharmacy and get your medications/prescriptions 3. 1. 2. Someone to help you figure out insurance issues 3. 1. 2. Someone to help you with your household bills 3. 1. 2. Someone to help you cook if you were unable to cook 3. 1. 2. Someone to help with daily chores (washing dishes, clean, laundry) if you were not feeling well 3. 1. 2. Someone to help you with childcare if you were not feeling well 3. 1. 2. Someone to help you find resources 3. 1. 2. Someone to interpret / translate for you 3.
284 Appendix C: (Continued) 1. 2. Someone who shows you love and affection 3. 1. 2. Someone to do something enjoyable with 3. 1. 2. Someone to visit you at home or in the hospital if you were not feeling well 3. 1. 2. Someone to bring you soup/food if you were not feeling well 3.
285 Appendix C: (Continued) Who helped you make decisions about your cancer car e and treatment? __________________________________________________ If you are upset or depressed do you have access to a therapist or mental health professional? __ Si __ No Has your family accepted your illness? __ Si __ No Thank you for answering the questions about the sup port you have available. I know that took a lot of time, courage and thoughtfulness. Do you need to take a break? [If yes, stop and take a break. If no, continue to the next set of questions.] We are almost done. The following questions will be about your backgrou nd, education, and work experience. These will help me learn a little bit more about yo u.
286 Appendix C: (Continued) DEMOGRAPHICS Please tell me how well you speak and write in Span ish and English. With regard to ENGLISH how well do you: Very well A little Not at all Understand it when it is spoken to you Speak it Read it Write it With regard to SPANISH how well do you: Very well A little Not at all Understand it when it is spoken to you Speak it Read it Write it The following questions are going to be about you a nd your household. How many children do you have? ______ If you have children, how many children do you have under the age of 18? ________ How many people live in your home, besides you ? _______ What kind of work do you currently have? ___ Full time ___ Half time ___ Retired ___ Homemaker ___ Unemployed ___ Unemployed due to disability or illness What is your current employment/occupation? _______________________________________
287 Appendix C: (Continued) What is you current annual household income? ___ 10,000 or less ___ 10,00130,000 ___ 30,001-50,000 ___ More than 50,000 ___ Dont know Where does your household income come from (Check a ll that apply)? ___ Your own salary or your partners salary ___ Social security ___ Pension or retirement fund ___ Economic assistance from son(s) or/and daughter (s) ___ Economic assistance from other relatives ___ Own business ___ Other sources_________________________ What is the highest grade of school you completed? ___________________ What is your current marital status? ___ Married/ with partner ___ Single ___ Divorced/separated ___ Widowed Do you drive? ___ Yes ___ No What is your zip code? __________________ Do you belong to a church or other religious organi zation? ___ No ___ Yes Please answer to what extent the following things a re a problem or stressful for you. You can answer that they are not a problem at all, some times a problem or Yes, very much a problem for you.
288 Appendix C: (Continued) We are almost done, now the following questions are going to be about when you came to this county. IMMIGRATION EXPERIENCE What year did you move to the USA? _________ Who came with you to the United States (check all t hat apply? _____________________________ ___ I came alone ___ My husband ___ Children ___ Whole family (e.g, parents or other relatives) How long have you lived in this city (where you liv e now)? ___ Less than a year ___ One to five years ___ More than five years Are any of the following a problem or stressful for you? No Sometimes Yes Not applicable Being far away from family/friends in your native country Relationship with my children Childcare Providing for my family Not being able to pay for medications Paying household bills (rent, electricity, water etc) Living in an unsafe area Immigrations status Relationship with my spouse/partner The type of work you do Work environment Peoples negativity/ la negatividad de otras personas
289 Appendix C: (Continued) How often do you keep in touch with your friends/re latives in your native country via phone or email? ___ Never ___ Once every few months ___ At least once a month ___ At least once a week ___ More than once a week ___ Not applicable Did you send money back home before the cancer diagnosis? __ Yes __ No If yes, did the cancer diagnosis affect your abilit y to send money to your family back in your native country? __ Yes, very much. I was no longer able to send mon ey __ Yes, a little. I was not able to send as much mo ney as I used to __ No, it did not affect my ability to send money b ack home to my family Do you belong to a ethnic/civic/social organization or club from your native county, like circulo cubano or el club ecuatoriano etc )? ___ Yes ___ No Thank you for the time you have taken to complete t his questionnaire. The information you provided is very helpful and will help me under stand the experience of Latina women with breast cancer. Please dont hesitate to call Dina at ___________ if you have any questions.
290 Appendix C: (Continued) Hola, mi nombre es _________________. Este estudio es sobre el apoyo y las necesidades de mujeres Latinas que han sido diagnos ticada con cncer y que han nacido en otro pas y ahora viven en los EEUU. Antes que empecemos, quiero estar segura que usted entiende lo que vamos hacer. Le quisiera hacer varias preguntas sobre la salud y su experiencia con cncer. Lo que usted va a compartir conmigo es muy importante para m. La primera serie de preguntas sern sobre su experiencia con el cncer de seno y apoyo. Despus seguiremos con preguntas demogrficas sobre su trabajo, educacin etc. Y su experiencia cuando se mudo a los EEUU. Esta encuesta tomara unos 30-45 mi nutos. Si usted necesita parar or descansar por favor djeme saber. Su participacin es voluntaria. Las preguntas no ti enen respuestas ni buenas ni malas. Todo lo que usted comparte conmigo ser confidencia l y no tiene que responder a las preguntas que no quieras. Su respuestas igual que l as respuestas de las otras seoras que estn participando sern reportadas en forma de grupo, en fin sus respuestas no van a estar conectada a su nombre. No se sienta con presin de participar en este estudio. No sabemos si se beneficiar de algn modo por part icipar en este estudio. Pero al participar en l, es posible que me ayude aprender sobre sus necesidades y el apoyo que necesitan mujeres diagnosticada con cncer del seno. Podremos usar la informacin para desarrollar mejores programa de ap oyo en espaol. Si tiene alguna pregunta or preocupaciones sobre es te estudio, puede llamar a Dina Martinez al 813728-5895 o al 813-979-4291 o a la Dr. Linda Whitefo rd (profesora principal del la disertacin) al 813-974-0801 Quiere participar en este proyecto? __ Si __ No Si, no, gracias por su tiempo. Si si, sigamos al la encuesta. Es este un buen tiem po para hablar con usted, sin interrupcin? Si, no, por favor djeme saber cuando ser un buen tiempo para llamarla de nuevo. Fecha y hora: __________________________ Antes que empecemos, me puede decir: Que edad usted tiene? ________ Dnde naci usted? ___________________________________
291 Appendix C: (Continued) CANCER AND TREATMENT EXPEREINCE Las siguientes preguntas sern sobre su experiencia con el cncer de seno y el tratamiento que recibi. En que ao le diagnosticaron con cncer? ______________ [Si el participante ha sido diagnosticada con cnce r anteriormente por favor escriba el ao que fue diagnosticada recientemente] En que etapa estaba su cncer de seno cuando fue d iagnosticada? _____________ Que tipo de ciruga recibi usted? ___ Lumpectomia ___ Mastectomia ___ Otra:__________________ ___ Ninguna Si No Comentario Usted recibi quimoterapia? Usted recibi radioterapia? Actualmente usted esta tomando medicinas relacionas con su tratamiento de cncer (por ejemplo como arimidex o tamoxifen)? Usted tuvo ciruga de reconstruccin? Usted busco una segunda opinin cuando le diagnosticaron con cncer? Usted tenia seguro medico cuando la diagnosticaron con cncer? Actualmente, usted tiene algn tipo de seguro medico? En cual clnica o hospital usted recibi la mayor a del tratamiento de cncer? ___________________________________________________ ___________________ ______ [Interviewer: Probe: Community clinic (for example, Judeo Christian, Clinica Guadalupana), Moffitt cncer Center, St. Josephs c ncer Institute, Morton Plant Mease, Lakeland Regional, MD Anderson in Orlando, UCH, Tam pa General, Private oncologists, Other] Cuando usted recibi el diagnostico de cncer uste d viva: ___ En la misma casa en la cual vivo ahora (Skip to question number #) ___ En una casa diferente en la misma ciudad ___ En una ciudad diferente ___ En un estado diferente ___ afuera de los EEUU
292 Appendix C: (Continued) Si se mudo despus de ser diagnosticada con cncer por que se mudo? ___________________________________________________ _____________ Usted ha participado en algunos de estos programas despus de ser diagnosticada con cncer (Please check all that app ly)? ___ Hablo con un trabajador social or terapista ___ Reach to Recovery de la asociacin Americana de cncer ___ Luzca Bien Sintase Mejor ___ Campamento Alegria ___ Grupo de apoyo: si, si cual ___________________ _____ ___ Participado en una caminata o carrera para el c ncer? ___ Otro: _____________________________ Que tanto tiempo usted tuvo que esperar par ver un cirujano or especialista de cncer despus de su diagnostico de cncer de seno? ___ Menos de una semana ___ Dos a tres semanas ___ De uno a dos meses ___ Ms de dos meses Usted trabajo durante su tratamiento para el cnce r? ___ Si ___ No Ahora, quiero aprender sobre su experiencia con sus mdicos. Recurdese que no voy a compartir esta informacin con sus mdicos. Le vo y a leer una oracin. Por favor responda no, a veces or si. No A veces Si Usted entendi todas las explicaciones y instrucciones que le dio su medico? Usted recibi suficiente informacin sobre el tratamiento que recibi? Usted pudo comunicar sus preocupaciones y preguntas a sus mdicos? Usted sinti que sus mdicos oyeron sus preocupaciones y preguntas? Sus mdicos le dieron informacin sobre donde puede ir para apoyo? Tambin estoy interesada en aprender como el cncer ha afectado su vida. Por favor base sus respuestas a las siguientes preguntas en s u vida en este momento.
293 Appendix C: (Continued) Como describe su salud en general? ___ Mal ___ Regular ___ Bien ___ Excellente El cncer afecta la vida de la mujer en varias form as, para entender mejor como el cncer ha afectado su vida le voy a preguntar cuan estresante fueron los siguientes aspectos de su enfermedad y tratamiento. Favor de c ontestar no, un poco, si o no aplica. No Un poco Si No aplica Que tan angustiante ha sido su enfermedad para su familia? Porque? Su enfermedad ha afectado negativamente a su relacin intima/sexual con su esposo/pareja? Su enfermedad ha interfiriendo con su empleo? Su enfermedad y el tratamiento que ha recibido han interfiriendo con su actividades del hogar? Usted se ha sentido sola o aislada por su tratamiento o enfermedad? El apoyo que usted ha recibido de otros ha sido su ficiente para satisfacer sus necesidades durante su enfermedad y tratamiento? __ No __ A veces __ Si Yo le voy a pedir que piense en todas las cosas que nosotros como mujeres somos para otras personas, sobre las responsabilidades y obligaciones que tenemos y el papel que tomamos en la vida de los dems. Le voy a ser p reguntas sobre estas responsabilidades y obligaciones. Si no aplican a u sted por favor dgame que no aplican para usted.
294 Appendix C: (Continued) Algunas mujeres han compartido que el cncer afecta su habilidad de hacer algunas cosas que, nosotras como mujeres, hacemos. Por favor dgame si el cncer ha afectado su habilidad de hacer algunas de las siguientes cosas: No Un poco Si No aplica Criar a sus hijos Educar a sus hijos Ser sincera y honesta Proveer para su familia Ser cariosa y amorosa Cuidar a su esposo Cuidar a sus padres Trabajar (fuera de su casa) Actualizarse / Profesionalizarse Mantener su casa Ahora quisiera aprender sobre como usted se comunic o con su familia sobre el diagnostico de cncer. Usted le hablo a su familia sobre su diagnostico? ___ Si inmediatamente ___ Si, pero espere un tiempo para decirle ___ No, no le he hablado de mi diagnostico Si usted espero para decirle sobre su diagnosis, p or que usted espero? ______________ ___________________________________________________ _____________ ____________ Durante su tratamiento para el cncer, que tan a m enudo usted se comunicaba con su familia por telfono o correo electrnico? ___ Nunca ___ Ms de una vez a la semana ___ Por lo menos una vez a la semana ___ Por lo meno una vez a mes ___ Una vez cada dos meses o menos ___ No aplica Usted se pudo comunicar con su familia y amistades en su pas cuantas veces usted necesitaba durante su enfermedad y tratamient o? ___ No ___ Si
295 Appendix C: (Continued) Si no, esto le causo estrs o angustia? ___ No ___ Si Sinti alguna vez que necesitaba mantener una apar iencia fuerte y feliz durante su tratamiento de cancer? ___ No ___ A veces ___ Si Algunas ves usted ha sentido que tiene que escoger entre trabajar para proveer para su familia y seguir su tratamiento. ___ No ___ A veces ___ Si En la siguiente seccin, le voy a leer algunas orac iones. Por favor recuerde que no hay respuestas correctas o malas. Solamente quiero sabe r su opinin. Por favor dgame si esta de acuerdo con las siguientes oraciones. Es mejor no cargar a su familia y amistades con pre ocupaciones personales. __ De acuerdo __ No de acuerdo Hay que aceptar el sufrimiento. __ De acuerdo __ No de acuerdo Hay que resignarse a lo que le trae la vida, uno no puede cambiar lo que va a pasar. (Resignar) __ De acuerdo __ No de acuerdo Las necesidades de la familia deben de venir primer o que las de uno __ De acuerdo __ No de acuerdo Todo va a ser como Dios quiera (si Dios quiere) __ De acuerdo __ No de acuerdo
296 Appendix C: (Continued) Ahora quisiera aprender sobre su experiencia con su cuidado medico. Usted ha tenido algn problema o dificultad con las siguientes cosas? Dgame si o no? Si No Comentario Obtener citas para un mamograma (citas para un diagnostico) Encontrar un doctor u hospital que le proveer tratamiento para el cncer Obtener o mantener un seguro medico Hacer citas para seguimiento de cuidado medico Pagando lo biles mdicos Pagando los medicamentos y medicinas Encontrar informacin en espaol. Usted tiene el siguiente tipo de apoyo si lo necesita? No Si Si si, quien? No me tiene que dar el nombre, solamente la relacin de esa persona a usted. Por ejemplo si es su hermana, amiga, esposo, to, madre etc... [si el participante dice mas de 3 personas, pdale que seleccione las tres mas importante] Que idioma hablan? IN: ingles ES: espaol B: bilinge Adonde viven? M: mi pais U: USA O: otro pais *** etnicidad? M: misma nacionalidad H: hispano O: otra etnicidad no hispana Que edad tiene ? 99: no se
297 Appendix C: (Continued) 1. 2. Alguien que le escuche cuando usted necesita hablar 3. 1. 2. Alguien con quien usted pueda hablar con confianza y hablarle sobre sus problemas 3. 1. 2. Alguien que sea paciente con usted 3. 1. 2. Alguien que le de animo 3. 1. 2. Alguien quien le ayude con los animales/mascotas si usted estuviera en el hospital 3. 1. 2. Alguien quien entienda sus problemas 3. 1. 2. Alguien quien le ayude si estuviera confinado a una cama o postrado en cama 3. 1. 2. Alguien quien le lleve/maneje al medico 3. 1. 2. Alguien quien le ayude a llenar los papeles/formularios mdicos 3.
298 Appendix C: (Continued) 1. 2. Alguien quien vaya a la farmacia a buscar sus medicinas 3. 1. 2. Alguien quien le ayude arreglar problemas relacionado con el seguro 3. 1. 2. Alguien quien le ayude con los biles de la casa 3. 1. 2. Alguien quien le ayude a cocinar si usted no pudiera cocinar 3. 1. 2. Alguien quien le ayudara las cosas de la casa (fregar, limpiar, lavar) si usted no se sintiera bien 3. 1. 2. Alguien quien le ayude a cuidar sus nios si usted no se sintiera bien 3. 1. 2. Alguien quien le ayude a buscar recursos financieros o de la comunidad 3. 1. 2. Alguien quien le traduzca o le sirva de interprete 3.
299 Appendix C: (Continued) 1. 2. Alguien quien le de amor y cario 3. 1. 2. Alguien con quien hacer algo que usted disfrute 3. 1. 2. Alguien quien le venga a visitar en la casa or al hospital si usted no se siente bien 3. 1. 2. Alguien quien le traiga sopa o comida si usted no se siente bien 3. Quien la ayudo a tomar decisiones sobre su cuidado medico y tratamiento para el cncer? __________________________________________________ Si usted se siente deprimida o con angustia; usted tiene acceso a un terapeuta or profesional de salud mental? __ Si __ No Su familia ha aceptado su enfermedad? __ Si __ No Gracias por contestar estas preguntas sobre el apoy o que usted tiene disponible. Yo se que tomo bastante tiempo, fuerza y atencin. Usted necesita tomar un descanso? [If yes, stop and take a break. If no, continue to the next set of questions.] Ya estamos casi acabando. Las siguientes preguntas son sobre su his toria personal, educacin, y trabajo. Me ayudaran aprender un poco mas de usted.
300 Appendix C: (Continued) DEMOGRAPHICS Por favor dgame que tan bien usted habla y escribe en ingles y espaol. Con relacin al ingles, qu tan bien usted: Muy bien Un poco Nada Lo entiende cuando le hablan? Lo habla? Lo lee? Lo escribe? Con relacin al espaol, qu tan bien usted: Muy bien Un poco Nada Lo entiende cuando le hablan? Lo habla? Lo lee? Lo escribe? Las siguientes preguntas son sobre su hogar. Cuantos hijos usted tiene? ______ Si tiene hijos, cuantos hijos tiene que son menor de 18 anos? ________ Adems de usted, cuantas personas viven en su hoga r? _______ Actualmente, usted trabaja: ___ Tiempo completo ___ Medio tiempo ___ Retirada ___ Ama de casa ___ Desempleada buscando trabajo ___ Desempleada por discapacidad o enfermedad Que tipo de trabajo tiene usted? o Que trabajo ha ce actualmente? _______________________________________
301 Appendix C: (Continued) Cuanto es el ingreso anual de su hogar en estos mo mentos? ___ 10,000 o menos ___ 10,00130,000 ___ 30,001-50,000 ___ Ms de 50,000 ___ No se De donde provienen sus ingresos? Marque todas las que apliquen ___ Su salario o el de su pareja ___ Seguro Social ___ Pensin o Retiro ___ Ayuda econ mica de hijo(a)s ___ Ayuda eco n mica de familiares ___ Rentas de propiedad o viviendas ___ Negocio propio ___ Otras fuentes_________________________ Cual es el ltimo grado escolar que usted completo? ____________________ Cual es su estado civil? ___ Nunca casado/Soltera ___ Casada/Unin consensual ___ Separada/Divorciada ___ Viuda Usted maneja? ___ Si ___ No En que barrio/rea de _____ vive usted? ____________ (nombre / zip code) Usted pertenece a una iglesia u otro grupo religio so? ___ Si ___ No
302 Appendix C: (Continued) Por favor djeme saber que tan estresante o problem tico son las siguientes cosas para usted. Puede contestar que no son un problema para usted, a veces son un problema para usted o que si son un problema para usted. Algunas de las siguientes cosas son un problema para usted o le causan estrs? No A veces Si No aplica Estar lejos de mi familia y amistades que viven en mi pas Relacin con mis hijos Cuidado de los nios Proveer para mi familia No poder pagar o comprar las medicinas No poder pagar lo biles de la casa (renta, electricidad, agua) Vivir en una rea peligrosa Inmigracin Relacin con mi esposo/pareja El tipo de trabajo que tengo El ambiente donde trabajo La negatividad de otras personas Ya casi estamos acabando, ahora las siguientes preg untas son sobre su experiencia cuando vino a este pas. EXPERIENCIA MIGRATORIA En que ano se mudo para los EEUU? _________ Quien vino con usted cuando se mudo a los EEUU? (m arque todo lo que apliqu)? ___ Vine sola ___ Mi esposo/pareja ___ Hijos ___ Mi familia (e.g, padres o otros familiares) Cuantos aos usted lleva viviendo en esta ciudad? ___ Menos de un ao ___ De uno a cinco aos ___ Ms de cinco aos
303 Appendix C: (Continued) Que tan a menudo usted se comunica por correo elec trnico o por telfono con sus familiares y amistades en su pas? ___ Nunca ___ De ves en cuando ___ Una vez aL mes ___ Una vez a la semana ___ Ms de una vez a la semana ___ No aplica Usted ayudaba o mandaba dinero a su familia en su pas antes de ser diagnosticada con cncer? __ Si __ No Si si, el diagnostico de cncer afect su habilida d de mandar ayuda o dinero a su familia en su pas? __ Si, muchsimo, no pude seguir mandndole dinero __ SI, un poco, No le poda mandar tanta ayuda o di nero como antes __ No, no afecto mi habilidad de mandarle ayuda o d inero a mi familia en mi pas Usted pertenece a una organizacin o club social o cvico o de su nacionalidad, como el crculo cubano, ecuatoriano etc. )? ___ Si ___ No Gracias por el tiempo que a compartido conmigo y co ntestar las preguntas de este cuestionario. La informacin que usted a compartido con migo nos ayudara mucho y a mejor entender la experiencia de mujeres Latinas di agnosticada con cncer. Puede llamar a DINA al 813-728-5895 si tiene algunas preg untas.
304 Appendix D: List of Items Used in Each of the Scale s Chronic Stress Scale Items Are any of the following a problem or stressful for you? Relationship with my children Providing for my family Not being able to pay for medications Paying household bills (rent, electricity, water et c) Immigrations status The type of work you do Work environment Overall Social Support Scale Items Do you have the following kinds of support availabl e if you need it Someone who listens to you when you need to talk Someone to confide in or talk to about your problem s Someone who is patient with you Someone who encourages you Someone to look over your pets if you were if you w ere hospitalized Someone who understands your problems Someone to help you if you were confined to bed Someone to drive you to the doctor Someone to help you fill out medical-related paperw ork Someone to go to the pharmacy and get your medicati ons/prescriptions Someone to help you figure out insurance issues Someone to help you with your household bills Someone to help you cook if you were unable to cook Someone to help with daily chores (washing dishes, clean, laundry) if you were not feeling well Someone to help you with childcare if you were not feeling well Someone to help you find resources Someone to interpret / translate for you Someone who shows you love and affection Someone to do something enjoyable with Someone to visit you at home or in the hospital if you were not feeling well Someone to bring you soup/food if you were not feel ing well Emotional Support Scale Items Someone who listens to you when you need to talk Someone to confide in or talk to about your problem s Someone who is patient with you Someone who encourages you Someone who understands your problems Someone who shows you love and affection Someone to do something enjoyable with Someone to visit you at home or in the hospital if you were not feeling well
305 Appendix D: (Continued) Provider Communication Scale Items Did you understand all the explanations and instruc tions you received from your doctor? Did you receive sufficient information about the tr eatment you received? Where you able to communicate your worries and conc erns to your doctors? Did you feel your doctor listened to your concerns?
306 Appendix E: IRB Letter of Approval
307 Appendix E: (Continued)
308 Appendix F: Demographics of In-Depth Interview Part icipants n=28 In-depth Interview Demographics (n=28) Item Response Percent Language spoken Spanish only Spanish/English not well Bilingual 28.6 32.1 39.3 Language spoken at home Spanish English Bilingual 82.1 7.1 10.7 Educational attainment Less than high school High school graduate Some college or college graduate 17.9 28.6 53.6 Current employment Home maker Half time Full time Unemployed Disability Retired 32 25 28.6 7.1 3.6 3.6 Employment before diagnosis Home maker Half time Full time Unemployed 14.3 17.9 64.3 3.6 Worked during treatment 50 Percent of Hispanic density of zip code population .5-10% 10.1-20% 20.1-30% 30.1-40% 40.1-50% 21.4 39.3 17.9 3.6 17.9 Percent live in poverty area by census poverty category 00-12.39% 12.40-19.99% 20.00-39.99% 60.7 25 14.3 Current household income 10,000 or less 10,001-30,000 30,000-50,000 50,000 + 29.6 44.4 18.5 7.4 Current marital status Married/Partner Divorced Single Widowed 67.9 17.9 10.7 3.6 Marital status before diagnosis Married/Partner Divorced Single Widowed 71.4 14.3 10.7 3.6
309 Appendix F: (Continued) Number of children 0 children 1 child 2 Children 3 Children 4 Children 5 Children 25 10.7 28.6 21.4 10.7 3.6 Number of people in household Alone Two people Three people Four people Five people Six people Seven people 10.7 21.1 14.3 25 10.7 3.6 3.6 Nationality/ County of origin Argentina Colombia Cuba Ecuador Spain Mexico Panama Peru Puerto Rico Venezuela 3.6 25 7.1 10.7 7.1 3.6 3.6 3.6 25 10.7 Length of time in the USA 5 years of less 6-10 years 11-20 years 21-30 years 3plus years 21.5 14.3 17.9 35.7 10.8 Length of time in city where they currently live 5 years of less 6-10 years 11-20 years 21-30 years 39.2 32.1 17.9 10.8 How often visit native country Once a year Once every two-three years Once every five years Once every ten years Never 21.4 28.6 7.1 14.3 28.6 Immigration status Non documented 25 Year diagnosed 2007 2006 2005 2004 2003 2002 7.2 32.1 21.5 17.9 14.3 7.2
310 Appendix F: (Continued) Stage at diagnosis I II III IV Don't know 21.4 32.1 35.7 7.1 3.6 Type of treatment Lumpectomy Mastectomy Missing 39.3 57.1 3.6 Chemotherapy 78.6 Radiation 75.0 Took other cancer-related medications 71.4 Had breast reconstruction 21.4 Insurance status Currently have insurance Do not have insurance 60.7 39.3 Insurance status before diagnosis Had insurance Do not have insurance 46.4 53.6 Received cancer and treatment information in English Spanish Bilingual 64 21 14 Language preference for treatment information Spanish 82.1 Had transportation to doctor appointments if needed Yes No Sometimes 67.9 3.6 28.6
311 Appendix G: Demographics of Structured Interview Pa rticipants Demographics (n=60) Ethnicity Percent Columbia 16.7 Cuba 11.7 Dominican Republic 8.3 Ecuador 6.7 Guatemala 1.7 Honduras 3.3 Mexico 8.3 Peru 6.7 Puerto Rico 33.3 Venezuela 3.3 Children Under 18 years of age 27.6 Had no children 20 Average number of children: 2.2 Marital Status Never Married/Single 11.7 Married/Consensual Union 51.7 Separated/Divorced 30 Widowed 6.7 Dont drive 23.7 Household size Live alone 15% Average household size: 2 Current Employment Fulltime 36.7 Half time 6.7 Retired 13.3 Ama de casa (homemaker) 13.3 Unemployed looking for work 5 Unemployed due to disability/illness 25 Household income 10,000 or less 28.3 10,001-30,000 33.3 30,001-50,000 15 More than 50,000 11.7 Don't know 11.7
312 Appendix G: (Continued) Source of Income Own/ Spouse Salary 63.3 Social Security 28.3 Economic Assistance from Children 18.3 Economic Assistance from Family 20 Rent from Other Properties 3.3 Own Business 3.3 Other 20 Educational Attainment 6th Grade or Less 16.7% 7th-11th Grade 6.7% High School 41.7% Some Collage 15% College Graduate 13.3% Graduate School 5% English Very Well A little None Understand when spoken 36.7 43.2 20 Speak it 33.3 41.7 25 Read it 45 30 25 Write it 36.7 30 33.3 Spanish Very Well A little None Understand when spoken 98.3 1.7 Speak it 98.3 1.7 Read it 86.7 6.7 6.7 Write it 86.7 6.7 6.7 Length of time in the US Percent Lived in the US 5 yrs or less 16.7 Lived in the US Between 6-10 yrs 20 Lived in the US Between 11-15 yrs 10 Lived in the US Between 16-20 yrs 6.7 Lived in the US more than 20 years 46.7 Who came with you to the USA Alone 35 With Husband 25 With Children 28.3 With Whole Family 28.3
313 Appendix G: (Continued) How Often Communicate with Family in Native Country Never 3.3 Every Once in a While 15 Once a Month 10 Once a Week 45 More than Once a Week 25 Not Applicable 1.7 Sent Remittances Back Home Before Diagnosis 54.2 Did Diagnosis Affect Ability to Send Remittances Ho me Could No Longer Send Remittances 37.5 A Little, Could Not Send as Much as Before 43.8 Not at all 18.8 Age range : 30-85 Yrs Percent Under 50 45 50 and older 55 Year Diagnosed 2003 11.7 2004 15 2005 6.7 2006 28.3 2007 30 2008 8.3 Stage at Diagnosis I 33.3 II 25 III 21.7 IV 1.7 Don't know 18.3 Treatment Lumpectomy 28.3 Mastectomy 70.1 Other 1.7 Chemotherapy 75 Radiation 61.7 Treatment Related Medications 55.9 Had Reconstruction 26.7 Got a Second Opinion 18.3 Had Insurance at Time of Diagnosis 71.7 Currently has Insurance 80
314 Appendix G: (Continued) Program Participation Spoke to social worker 46.7 Reach to Recovery from ACS 16.7 Look Good Feel Better from ACS 43.3 Campamento Alegria 76.7 Support Group 50 Cancer Walk or Race 28.3 Length of time had to wait to see cancer specialist after diagnosis Less than a week 26.7 Two-Three Weeks 38.3 One to Two Months 23.3 More than Two Months 11.7 Worked During Treatment 30
About the Author Dinorah Martinez Tyson received a Masters Degree in Public Health from the University of South Florida in 2003, a Masters Deg ree in Applied Anthropology from Northern Arizona University in 1998 and Bachelors Degree Anthropology from Florida Atlantic University in 1996. While in the Ph.D. program at the University of So uth Florida, Ms. Martinez Tyson has been employed as a research coordinator a t Moffitt Cancer Center. During this time, she has intimately worked with the local Hispanic community. She has participated in several local Spanish language TV p rograms that explore Latina cancer issues. She has also been involved with LUNA, Inc. a local support group for Latinas diagnosed with cancer. The LUNA, Inc. mission is to provide support and offer culturally, linguistically relevant education to Hispanic breas t cancer survivors and their family. She has experience conducting community-based participa tory research and worked to develop community-based educational programs, such as Camp Alegria.