New Mexican hispanic latinos' perspectives on cancer pain: meaning, coping, and barriers to relief

The primary aim of this qualitative descriptive study was to explore the experience of cancer-related pain (CRP) among Hispanic/Latino adults in New Mexico, and secondarily to describe how institutional and provider-level factors influence the personal experience of CRP. Fourteen individual interviews were recorded and independently transcribed. To triangulate findings additional data came from interviews with two allopathic physicians, a traditional folk healer (curandera), and three family caregivers; medical records were reviewed for evidence of pain assessment and management. Thematic analysis guided the formation of three primary themes and associated categories. Pain Is More Than Physical captured aspects of pain beyond a physical experience, including meaning, ways pain was described and the critical need for building trusting relationships with providers. Coping with Pain encompassed participants' strategies for managing pain, inclusive of culturally-learned behaviors. Of importance was family support and faith in dealing with pain. The theme, Hurdles and Hindrances, reflected barriers to pain relief. Gaps in pain assessment and challenges related to accountability for who was managing the pain were identified. Deficits in provider communication and being treated with respect were described. A final element to this theme reflected misconceptions and medication side effect management. Medical record analysis found limited use of evidence-based guidelines in pain assessment and management. Participants suggested that providers situate pain within the context of the iv whole person and family experience and strive for better patient-provider communication. Family members described needing to advocate for their loved ones, reinforcing the challenges with pain assessment and management described by participants. These findings align with past research and suggest a shift in the providercentric paradigm, instead creating a patient/family centered model. Greater inclusivity supports development of a trusting provider/patient/family triad. Improving communication creates a platform for a better understanding of the patient/family experience and how behavior and coping is shaped by culture, thus informing management and the quality of care. Further recommendations for professionals and institutions are developing clearer accountability for pain management as patients' transition between specialist-providers, as well as creating a stronger infrastructure to support communication and delivery of evidence-based practices and quality metrics to evaluate pain care.

NEW MEXICAN HISPANIC LATINOS' PERSPECTIVES ON CANCER PAIN: MEANING, COPING, AND BARRIERS TO RELIEF by Andra Lee Davis A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Nursing The University of Utah December 2014 Copyright © Andra Lee Davis 2014 All Rights Reserved T h e U n i v e r s i t y o f U t a h G r a d u a t e S c h o o l STATEMENT OF DISSERTATION APPROVAL The dissertation of Andra Lee Davis has been approved by the following supervisory committee members: Lauren Clark , Chair 10/9/2014 Date Approved Susan Larson Beck , Member 10/13/2014 Date Approved Kristin Gates Cloyes , Member 10/8/2014 Date Approved Barbara I. H. Damron , Member 10/8/2014 Date Approved Gloria Juarez , Member Date Approved and by Patricia G. Morto n , Chair/Dean of the Department/College/School of Nursing and by David B. Kieda, Dean of The Graduate School. ABSTRACT The primary aim of this qualitative descriptive study was to explore the experience of cancer-related pain (CRP) among Hispanic/Latino adults in New Mexico, and secondarily to describe how institutional and provider-level factors influence the personal experience of CRP. Fourteen individual interviews were recorded and independently transcribed. To triangulate findings additional data came from interviews with two allopathic physicians, a traditional folk healer (curandera), and three family caregivers; medical records were reviewed for evidence of pain assessment and management. Thematic analysis guided the formation of three primary themes and associated categories. Pain Is More Than Physical captured aspects of pain beyond a physical experience, including meaning, ways pain was described and the critical need for building trusting relationships with providers. Coping with Pain encompassed participants' strategies for managing pain, inclusive of culturally-learned behaviors. Of importance was family support and faith in dealing with pain. The theme, Hurdles and Hindrances, reflected barriers to pain relief. Gaps in pain assessment and challenges related to accountability for who was managing the pain were identified. Deficits in provider communication and being treated with respect were described. A final element to this theme reflected misconceptions and medication side effect management. Medical record analysis found limited use of evidence-based guidelines in pain assessment and management. Participants suggested that providers situate pain within the context of the iv whole person and family experience and strive for better patient-provider communication. Family members described needing to advocate for their loved ones, reinforcing the challenges with pain assessment and management described by participants. These findings align with past research and suggest a shift in the provider-centric paradigm, instead creating a patient/family centered model. Greater inclusivity supports development of a trusting provider/patient/family triad. Improving communication creates a platform for a better understanding of the patient/family experience and how behavior and coping is shaped by culture, thus informing management and the quality of care. Further recommendations for professionals and institutions are developing clearer accountability for pain management as patients' transition between specialist-providers, as well as creating a stronger infrastructure to support communication and delivery of evidence-based practices and quality metrics to evaluate pain care. I wish to thank all of the participants for willingly sharing their stories as well as the families who supported their loved ones. I hope to have captured your experiences in a way that honors you and improves the quality of care others receive. I also cannot thank my family and friends enough for the ongoing, steadfast presence, patience and support, particularly my daughter Aleya. TABLE OF CONTENTS ABSTRACT ....................................................................................................................... iii LIST OF TABLES ........................................................................................................... viii LIST OF FIGURES .............................................................................................................x ACKNOWLEDGEMENTS ............................................................................................... xi Chapter I INT RODU CTIO N ...... ........... .......................................................................................1 Purpose and Specific Aims of This Study ...............................................................2 Contextual Background ...........................................................................................3 The Many Domains of Pain .....................................................................................7 Barriers and Undertreatment .................................................................................10 Statement of the Problem .......................................................................................13 Summary ................................................................................................................14 II REVIEW OF LITERATURE .....................................................................................17 Part I: Review of Cancer Pain Treatment ............................................................. 17 Review of Barriers and Undertreatment ................................................................26 Part II: Review of Hispanics and Health ................................................................34 Part III: Review of Cancer-related Pain Among Hispanics ...................................48 Summary and Rationale for Study .........................................................................59 III METHODS .................................................................................................................63 Specific aims and Research Questions ..................................................................63 Epistemology and Research Design .......................................................................64 Sampling and Data Collection …… ......................................................................69 Analysis and Establishment of Themes .................................................................89 Ethical Considerations ...........................................................................................94 Issues of Rigor .......................................................................................................96 Researcher's Assumptions and Personal Perspectives .........................................99 vii Limitations ...........................................................................................................100 Summary ..............................................................................................................101 IV RESULTS .................................................................................................................103 Primary Participant Characteristics ............................................................................103 Secondary Participant Description .............................................................................105 Field Note..s.. .............................................................................................................108 Results: Themes and Categories ...............................................................................119 Theme: Pain Is More Than Physical ..........................................................................121 Theme: Ways People Cope ........................................................................................135 Theme: Hurdles and Hindrances ................................................................................141 Additional Data Source..s. .........................................................................................151 Summary of Analysis .................................................................................................164 V DISCUSSION, LIMITATIONS AND NEXT STEPS ..............................................166 Discussion: Findings in Alignment with Past Research ............................................169 Obstacles and Barriers to Pain Relief ........................................................................179 Contextualizing My Journey - Further Outside Than I Realized ..............................186 Limitations .................................................................................................................190 Final reflections, Recommendations, and Dissemination ..........................................194 APPENDICES A PARTICIPANT DEMOGRAPHIC DATA .....C...O...L..L...E..C...T..I..O...N....203 B IRB WAIVER OF WRI.T...T..E...N... ......R..E...Q...U..E...S..T..........................204 C CO...N...S..E..N...T...............................................................................................206 D PUBLIC ......N...O..T...I.C...E...............................................................................214 E IRB APPROVA..L... ......L..E...T..T..E...R...........................................................216 REFERENCES .................................................................................................................218 LIST OF TABLES Table Page 1. Cancer Pain Syndromes ...........................................................................................9 2. Summary of Pain Guidelines and Practice .............................................................19 3. Hispanic Population Comparison ..........................................................................38 4. Common Features of Hispanic Cultures ................................................................42 5. Leading Cancer Site Comparison of Incidence and Mortality ...............................47 6. Data Collection Procedure .....................................................................................75 7. Participant Interview Guide ...................................................................................79 8. Medical Record Abstraction Guide .......................................................................85 9. Summary of Steps in Analysis ...............................................................................90 10. Primary Participant Demographic Characteristics ...............................................104 11. Primary Participant Clinical Characteristics ........................................................106 12. Category Development from Data Analysis ........................................................120 13. Thematic Categories Related to Understanding Cancer-related Pain ..................122 14. Aim I: Dimensions and Characteristics of the CRP Experience ..........................122 15. Language of Pain .................................................................................................132 16. Ways People Cope ...............................................................................................136 17. Hurdles and Hindrances .......................................................................................141 18. Understanding of Medications and Side Effects ..................................................148 ix 19. Key Informant Guide ...........................................................................................152 20. Medical Record Chart Abstraction ......................................................................160 21. Evidence of Pain Documentation .........................................................................161 22. Pain Is More Than Physical .................................................................................171 23. Ways People Cope ...............................................................................................175 24. Hurdles and Hindrances .......................................................................................180 25. Summary of Recommendations and Alignment with Study Aims and Themes ..............................................................................200 LIST OF FIGURES Figure Pag e 1. Pain Impacts the Dimensions of Quality of Life ...................................................10 2. World Health Organization Pain Management Ladder .........................................21 3. Biocultural Model of Pain Perception....................................................................55 4. Operational Model of CRP Themes and Categories Among Hispanic/ Latinos..................................................................................................................165 ACKNOWLEDGEMENTS I wish to acknowledge the many hours, expertise and patience of my committee chair, Dr. Lauren Clark. She in particular invested many hours in guidance, teaching and editing. Each member individually brought a critical and diverse perspective. Collectively they provided attentive review, support, and guidance. Their feedback challenged me throughout the writing process and for that I am truly grateful. I wish to acknowledge the stellar experience I have had with all of the faculty and staff at the College of Nursing and Graduate Studies Office at the University of Utah. I would like to acknowledge the American Cancer Society for the Doctoral Degree Scholarship in Cancer Nursing providing $30,000 over 2 years to aid in educational expenses. The Gamma Sigma Chapter of Sigma Theta Tau International in New Mexico provided a $1,000 research scholarship used for transcription costs. Finally I am grateful for the many hours of detailed editing provided by Valerie Clements. I am deeply grateful for her thoughtful attention to my writing and formatting. Lauren Clark, RN, PhD, FAAN Professor, University of Utah Susan Larson Beck, PhD, APRN, FAAN, AOCN Professor and Robert S. and Beth M. Carter Endowed Chair in Nursing College Of Nursing, University of Utah Kristin Gates Cloyes, PhD, RN Assistant Professor, College Of Nursing, University of Utah Barbara I. H. Damron, PhD, RN, FAAN Director, Office of Community Partnerships and Cancer Health Disparities and Associate Professor RWJF Nursing & Health Policy Collaborative University of New Mexico Cancer Center & College of Nursing Gloria Juarez, RN, PhD Assistant Professor, Nursing Research & Education, City of Hope, Duarte California CHAPTER I INTRODUCTION There are few generalizations that can be made about cancer and its associated experiences, yet some commonly occurring symptoms can be linked with cancer and its treatment: Pain remains a leader among them. Despite advances in pain management made over the last 15-20 years, moderate to severe pain persists among people with cancer. (McGuire, 2004; van de Beuken-van Everdingen, Rijke, Schouten, Kleof, & Patijn, 2007). Research on cancer pain continues to generate changes in public understanding, professional practice, and policy. In spite of expanding treatment options, increasing knowledge about pain physiology, professional educational efforts, and the dissemination of national and international professional treatment guidelines, many persons with cancer continue to experience unacceptable levels of pain (Paice & Von Roenn, 2014; van de Beuken-van Everdingen et al.). Goodwin and colleagues recently acknowledge that in spite of such efforts, little improvement has been realized in the last decade (Goodwin, Bruera, & Stockler, 2014). When persons are hindered by pain the ramifications extend beyond the individual. Undertreatment of cancer-related pain (CRP) negatively impacts many domains of life, often affecting families, communities, and society. Studies have documented the cost to society and health care systems of unrelieved pain in terms of lost 2 productivity, increased hospital lengths of stay, untimely readmissions, and frequent visits to outpatient centers and emergency rooms (Berger et al., 2003; Dagenais, Caro, & Haldeman, 2008; Edelsberg & Oster, 2007; Ferrell, 1983, 1995; Ferrell & Griffith, 1994). Pain as a physiological sensation does not occur in isolation of meaning - it is embedded socially, culturally, spiritually, and economically. Disparities in treating CRP among minority populations potentially compound the experience of pain and distress (Anderson et al., 2004). This chapter introduces the purpose and specific aims of this study, then provides an overview of the scope of the CRP problem. Undertreatment of CRP and how it is particularly pronounced for persons of diverse populations, including Hispanic/Latinos is reviewed. The summary and statement of the problem, introducing the study, conclude the chapter. Purpose and Specific Aims of This Study Understanding how CRP meaning is generated and experienced among Hispanic/Latinos has received limited exploration. The purpose of this descriptive qualitative study was to explore how Hispanics/Latinos living in New Mexico experience CRP in their daily lives and how these individual experiences are influenced by culture, local social/environmental, healthcare structural and provider-level factors. Specific Aims and Coinciding Research Questions Aim 1 Explore dimensions of the CRP experience as these are described by Hispanics/Latino participants. 3 RQ1: What characterizes the experience of CRP among New Mexican Hispanics/Latinos? Aim 2 Describe participants' perspectives of how local, institutional, and provider-level factors influence the experience of CRP. RQ2: What external factors influence the experience of living with CRP among New Mexican Hispanics/Latinos? Contextual Background Cancer-Related Pain: Prevalence and Defining Pain and cancer pain specifically has been considered a national patient care priority. In 1994, the Agency for Health Care Policy and Research (AHRQ - formerly AHCPR) issued a practice guideline specifically addressing the assessment and management of cancer-related pain to assist providers, policy-makers and the public to better understand and treat this phenomenon. Pain advocacy groups, both lay and professional, have raised awareness about cancer pain management by creating professional and lay organizations for the management of pain, developing professional position statements and national guidelines for assessment and treatment, implementing accreditation criteria related to the assessment and treatment of pain and finally, establishing grassroots advocacy groups - all important steps (American Cancer Society (ACS), 2014; American Pain Society (APS), 2014; International Association for the Study of Pain (IASP), 2014; Joint Commission for Accreditation of Hospital 4 Organizations (JCAHO), 2014; Oncology Nursing Society (ONS), 2014; National Comprehensive Cancer Network (NCCN), 2014). Estimates of new cancer cases in the US for 2014 will exceed 1.6 million and cancer deaths are predicted to reach 585,720 (ACS, 2014). The majority of persons with cancer will experience some degree of pain during active cancer treatment and into the ensuing years. Although methodology for determining prevalence figures has come under scrutiny, the fact that pain is commonly associated with a diagnosis of cancer cannot be overemphasized (IOM, 2011; National Institutes of Health State-of-the-Science Panel, 2003). Estimates place the prevalence of cancer-related pain from 14-100% (ACS, 2000; Brescia, Portenoy, Ryan, Krasnoff, & Gray, 1992; McGuire, 2004; van den Beuken-van Everdingenk et al., 2007). Incidence of CRP has been described along the care continuum, occurring in 59% of individuals receiving active cancer treatment and 64% of those with advanced disease. Prevalence of CRP was captured in a study conducted by the Eastern Cooperative Oncology Group (ECOG) using a sample of 1308 cancer patients. Sixty-seven percent reported they had recently experienced pain, and of those with pain 36% described that pain as bad enough to impair function (Cleeland, Gonin, Baez, Loehrer, & Pandya, 1997). Similar findings continue in more recent reports, reflecting impaired functionality (Deandrea, Montanari, Moja, & Apolone, 2008; Kwon, 2014). People with cancer are surviving longer, with 5-year relative survival rates estimated to be 68% overall for those diagnosed between 2003-2009 (ACS). Recent reports estimate that 5-10% of survivors have lingering chronic pain capable of 5 interfering with daily life (Glare et al., 2014). Pain in cancer survivors is complex as it may be related to late effects of treatment and can be associated with multiple symptoms (van den Beuken-van Everdinger, 2012). The scope of CRP care has expanded to include people in all stages of cancer diagnosis, treatment, and survival and at the end of life (National Institutes of Health (NIH) State-of-the-Science Panel, 2003). Defining Pain Defining the elusive concept of pain has most often centered on the inherently subjective and individual level factors. From Aristotle to contemporary times, many have cast their own interpretation of such an experience, trying to quantify it as well as acknowledge the many complexities that influence the pain experience (Montes- Sandoval, 1999). Morris (1991) reminds that pain is constructed differently depending on language of origin. Some emphasize the somatic while others see no separation between physical and mental (p. 15). Morris suggests that the challenge in defining pain is rooted in the assumption that it is a singular cohesive entity. The goal is not to isolate a discreet definition but rather describe the dynamic features that are affiliated with pain. Within these features, Montes-Sandoval has included physical, social, cultural, subjective, describable and indescribable and entangled with other sensations such as anxiety and distress. The scientific community recognized the need for a unified taxonomy across disciplines to enable scientific inquiry, advancement and exchange of information. Working definitions that most disciplines could agree upon emerged. A classic and widely accepted definition comes from the International Association for the Study of Pain (IASP) which states that pain is "an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in 6 terms of such damage" (Merkey & Bogduk, 1994, p. 210). This definition captures the physiological aspects of the experience as well as some of the affective sphere. The major assumption of this definition is that pain is fundamentally a physiological experience, keeping the less measurable and obscure aspects unacknowledged. IASP concedes ‘psychological' features but goes little further to elaborate. It should be acknowledged however that the notion of ‘sensation' is represented as ‘experience' in their definition, easing the emphasis on corporal features. Another commonly referenced working definition comes from Margo McCaffery (1980) stating, "pain is whatever the experiencing person says it is, existing whenever he says it does" (p. 26). McCaffery's definition is highly subjective yet remains free of attachment to physical, emotional or other particular domains. Her construct of pain allows for individuals to frame pain in whatever way resonates in their life. Finally, Mahon (1994) gleaned four attributes for a general concept of pain using a phenomenological framework. These domains are: a personal experience; an unpleasant experience; a dominating force; and endless in nature. Mahon's attributes primarily focus on the individual experience of pain, not recognizing external aspects that can get entangled with this subjective experience called pain. These conceptualizations of pain while epistemologically grounded in physiology, privilege the central lens of perception on individual experience and as IASP acknowledge need not include measurable evidence of tissue damage to exist. What is lacking among all definitions is recognition of cultural, local, situational, and provider-level aspects of making sense of a painful experience; considerations that may be at the core of one's experience. Morris (1991) proposed decades ago that it was futile to try 7 and unmask a perfect definition of pain and rather such efforts should be suspended and replaced with "ordinary language, common usage, and everyday experience" (p. 16). McCaffery's definition, being the one that does not create a limited construction of experience, was used to reference pain in persons with cancer in this study. Understanding both physical and affective domains of pain are important and there are unique features of both in CRP that distinguish it from pain of a nonmalignant origin. A broad overview of both physiological and affective dimensions is presented below. The Many Domains of Pain Physical Dimensions CRP has been divided into three major categories: pain caused by the tumor; pain stemming from its treatment (including surgery, radiation, or chemotherapy) or side effects; and pain unrelated to either (NCCN, 2014). Cancer pain can come as a sign of a new or recurrent malignancy (Caraceni & Portenoy, 1999; Cleeland, 1984). Although intensity varies based on pathophysiology, CRP consistently appears to primarily stem from tumor invasion (Caraceni & Portenoy; Cleeland). Caraceni and Portenoy facilitated a large international study in 24 countries, comprised of over 1,000 persons experiencing CRP requiring opioids as part of the treatment. They categorized the pain experiences into various pathophysiological origins. The majority of CRP in this sample stemmed from the underlying neoplasm (92.5%). The authors defined nociceptive pain as pain related to tissue injury, somatic or visceral in nature and neuropathic pain was felt to originate from neural tissue damage. As demonstrated, the majority of CRP does come from nociceptive pain, a type of pain more amenable to intervention; however, there is a significant percentage that is mixed or primarily neuropathic in origin. In addition, 8 Caraceni and Portenoy highlight the complexity of cancer pain syndromes. Table 1 summarizes pain syndromes associated with the original cause and type of pain. As they demonstrate, the majority of cancer pain syndromes are related to direct tumor involvement with resulting nociceptive pain. A comprehensive assessment of CRP must include an understanding of the essential physical origins of pain. In order to do this kind of proficient and complete assessment, clinicians must understand the research evidence on the complex nature and domains of CRP. Philosophical and Epistemological Dimensions Attempts to understand pain as a social construct precede modern times. Early philosophers such as Aristotle, Plato, and Descartes had much to say about pain, although from different perspectives (Duncan, 2000). Research in the last few decades has attempted to unravel and explain pain often from an objectivist epistemological vantage (Curtis, Krech, & Walsh, 1991; Dodd, Du Pen, Du Pen, Polissar, Hansberry, Kraybill, Stillman et al. 1999; Janson, Facione, Faucett, Froelicher, Humphreys et al., 2001; McCaffery & Pasero, 1999; Wool & Mor, 2005). These works, largely of a positivist nature, have sought to describe, quantify, justify, and control the construct of pain (Crotty, 1998). Indisputably this work has been of great significance in furthering the understanding and management of cancer-related pain. Pain has been viewed as an isolated experience as well as described as an interdependent relationship between both the psychic and physical worlds (Duncan, 2000). Despite the advances in formalizing pain care and its influence on public health, our "techno-centric" and instrumental approach has not been sufficient in addressing the 9 Table 1 Cancer Pain Syndromes Cancer Pain Syndrome/Origin % Of Total Cases* Related to direct tumor involving somatic or visceral tissue (Nociceptive) 98.1 Related to direct tumor involving lesions of nervous tissue (Neuropathic) 27.8 Related to therapy (Mixed) 10.2 Unrelated to cancer or treatment 6.6 * Some have more than one Adapted from Caraceni & Portenoy, 1999 complex phenomenon of pain; it is simply more than a physio-sensory happening. It is experienced at a physical level but also affectively, cognitively, socially, spiritually, within community and systems of care. Research has linked poor pain control to many other aspects of life and living; such as appetite, enjoyment in life, functional level or activity, intensity of other symptoms, immune function, depression, sleep, fatigue and anxiety (Cleeland, 2007; Juarez et al., 1998; Paice & Ferrell, 2011). Various levels of interplay exist between all these spheres of influence. Padilla and colleagues (Padilla, Ferrell, Grant, & Rhiner, 1990) have proposed a global and multidimensional model for the pain experience, inclusive of physical well-being but also other domains of quality of life - psychosocial or interpersonal wellbeing; spiritual and social well-being. Their framework has expanded how practitioners approach pain care (Figure 1). This model envelops many of the core complexities of a CRP experience. Physical well-being includes many bodily aspects of comfort, such as one's ability to sleep and eat. The psychological and spiritual domains bundle the deeply personal, often private, yet universal components of one's life. ts the Dimen ved from City http://prc.coh nsions of Qu y of Hope Pai h.org/qual_lif uality of Life in & Palliativ fe.asp 10 Social well-being recognizes the outward connections in an individual's world that are impacted by pain. What is not acknowledged in this model is the interplay of CRP and macro level structures like health care organizations and providers, local influences, and cultural orientations to the experience of living with pain. Barriers and Undertreatment An important assumption embedded in traditional definitions of pain is that the most reliable report of the existence of a painful experience comes from the person having the pain. Not accepting the patient's report of pain is a common first area of misunderstanding resulting often in suboptimal pain management (Kwon, 2014). There are many contributing factors to the undertreatment of pain, including barriers 11 encountered by providers, patients, family, institutions, and society in identifying pain characteristics and employing and evaluating pain treatments (Kwon; Paice & Ferrell, 2011). The pain experience is particularly entwined with the patient/family-situated cultural dynamics that enable or constrain how individuals identify pain, imbue pain with meaning and how and when pain expression or stoicism is expected (Cleeland, 1984). Not to be neglected is the interaction of the patient and healthcare provider as contributing to potential undertreatment (Kwon). All of these factors can serve to create misunderstandings, barriers, and ultimately undertreatment of pain when the patient and his or her culturally-situated pain experience is disclosed to biomedical clinicians who may not have the same understanding of pain as their patients. Disparities in Pain for People with Cancer Defining disparities in pain care has received recent attention. Both Braveman (2006) and Fink (2009) have taken a comprehensive look at the discourse around disparities and health inequities. Truman and colleagues (2011) cite the literature as it has differentiated disparities from inequalities and inequities as a component of in equalities. They describe disparities as differences in health outcomes based on social, demographic, environmental or geographical factors. Inequalities are a measure of population health based on particular attributes such as race/ethnicity, education and income. Inequities, considered unethical represents a modifiable element of inequalities based on social standing. The National Cancer Institute (NCI) (2013b) defines cancer disparities as "differences in the incidence, prevalence, mortality, and burden of cancer and related adverse health conditions that exist among specific population groups in the United States" (p. 1). The Health and Human Services (HHS) department describes health 12 disparities as differences in health outcomes between populations that may be closely linked with social, economic, and environmental disadvantage that are often driven by the social conditions in which individuals live, learn, work and play (2011, p. 1). Race, ethnicity, gender, gender identity, age, disability, socioeconomic status and geography are examples of factors that contribute to one's ability to achieve health (HHS, 2014). The Agency for Health Quality and Research (AHRQ) states that pain not only adds to the burdensome experience of cancer but that this burden is likely heavier for minorities, women and the elderly, as those groups are often undertreated for pain (2001). Hispanic/Latinos represent one such group and are at risk for greater disparity in management of CRP. The literature reports evidence of greater reporting of pain and higher levels of associated distress among Hispanics (Anderson et al., 2002; Cleeland et al., 1994; Im, Guevara, & Chee, 2007; Ng et al., 1996; Todd, Samarro, & Hoffman, 1993). Poorer outcomes in many domains, including quality of life have also been reported in Hispanics when compared to other groups (Green et al., 2003; Juarez, Ferrell, & Borneman, 1999). The US Census Report (2011) reports more than half of the growth in the US population was accounted for by the Hispanic population, rising from 13% to 16% between 2000 and 2010. There is an imperative to more intentionally explore cultural influences in symptom experiences and health care disparities in order to better inform intervention strategies that are more attuned to patients' needs and desires, more humane, and more effective in relieving suffering. Addressing health disparity and quality of life issues are part of Healthy People 2020 goals and eliminating such disparities is a federal health promotion and disease 13 prevention agenda priority (National Center for Health Statistics, 2012). The Oncology Nursing Society, National Institutes of Health, American Cancer Society, and Institutes of Medicine have all targeted cancer symptoms as well as health disparities as major focus areas for their respective research agendas (ACS CAN, 2007; IOM, 2011; NIH State-of-the-Science Panel, 2003; ONS, 2006). Statement of the Problem Undertreatment of cancer-related pain is complex and multifaceted. Forces at work at the individual, provider, institution and societal levels converge as they contribute to CRP (Hui & Bruera, 2014; Kwon, 2014). Additional contributing factors include the cultural context and meaning of pain, barriers to pain relief, cultural beliefs about pain, and shared expectations about pain expression that are seldom acknowledged or explored in clinical encounters (Anderson et al., 2004; Bates, Edwards, & Anderson, 1993; Campbell et al., 2009; Green et al., 2003; Im, Guevara, & Chee, 2007; Juarez, 1996; Juarez et al., 1998). These realities have only modestly shifted over the past 20-30 years (Goodwin, Bruera, & Stockler, 2014). Little research has explored dimensions of CRP among New Mexican Hispanic/Latinos as a cultural group and factors that intersect with these experiences. The general discourse found in medical-professional-bureaucratic initiatives and directives have targeted a more diagnostic-disease framework for addressing gaps in pain care. What is missing is an examination of the human experience and how structural influences, power and biases contribute, in an effort to activate change and improve outcomes. Describing these factors within the context of culture promotes a patient- 14 centered holistic approach to care and a shift in provider interventions to achieve greater relief of CRP among Hispanic/Latinos. Pain could be considered a cultural event and studied from such a perspective (Alrich & Eccleston, 2000). This standpoint is meant to suggest that the many unique individual-level factors, including upbringing, and culture of origin as well as local culture, biological function and dysfunction, interactions with the health care system are part of experience. In order to explore this experience from the position of the individual with pain, a qualitative descriptive approach guided this study. All such influences will be addressed as they arise through various avenues of data collection; including personal, cultural and factors of power and positionality. Summary This chapter has outlined the purpose and specific aims of this research study and briefly defined CRP, summarizing prevalence among those with a cancer diagnosis. Undertreatment of pain continues in spite of advances in treatment, professional education, and development of management guidelines and professional position statements. Racial and ethnic groups as a subset of those with CRP are disadvantaged and receive poorer pain care. We must be willing to look thoughtfully at the complexities of this problem. The discourse addressing interactions between the physiologic, emotional, and social aspects of pain is well established. Medical care nonetheless has privileged the biological basis for pain. This study proposed a reconstructed review of pain as a truly whole-person event that occurs within a particular cultural setting, recognizing that elements of experience are situated within a local climate of provider and system factors that also 15 influence pain. David Morris (1991) challenged the Western technocratic frame of understanding pain. Rather than suggesting pain be untangled from what science has discovered of its physical roots, instead we gather "together from episodes scattered throughout human history, across cultures and across time" to reframe that experience (p. 2). He further suggests the larger social and medical environments have culturally-constructed what pain is to modern society. This research is guided by the assumption that pain experiences are influenced by multiple facets of engagement and meaning, and I invite such consideration. Experience of pain and thus understanding it requires a deeper exploration, inclusive of physical manifestation and expression, emotional ramifications, and culture as well as factors external but influential to the individual sphere, such as the healthcare system and provider-level factors. Chapter II expands on the current state of knowledge related to CRP among Hispanic/Latinos. The chapter first looks at broad categories of pain care, including assessment, education, and treatment. The nearly unwavering issue of undertreatment of CRP is summarized with a review of individual, provider and structural contributions. Secondly, Chapter II addresses Hispanic/Latinos and health, starting by reviewing the definition of Hispanic and current census data, health care research pertaining to CRP in this population and finally, summarizing Hispanic health outcomes. The final section of Chapter II narrows on CRP specifically in Hispanic/Latinos and data on undertreatment. Literature relevant to cultural influences and meaning of pain is also reported. 16 Chapter III outlines the study design, including description of the methods and rationale use to study CRP. A description of the sample and a description of the data collection methods and steps are included. Samples of questions used to guide the interviews as they align with the research aims are included. A summary of the steps in data analysis and software utilization follows. All sources of data used in the analysis including primary participant interviews, provider interviews, caregiver contributions, medical record reviews and finally field notes are described. Chapter IV is a synthesis of results from analysis, situated in alignment with the study aims. Three themes and 11 associated categories are reported with transcript examples from interviews used to demonstrate credibility and add a vivid richness to the text. Chapter V discusses findings, highlighting implications and application of findings for practice, education, research and policy. CHAPTER II REVIEW OF THE LITERATURE This chapter provides a synthesis of the state of knowledge in two bodies of literature, proceeding along parallel yet seemingly unrelated paths. An overview of cancer pain treatment and undertreatment (Part I) is followed by an appraisal of Hispanic/Latino demographics and health outcomes research in this population (Part II). These two domains intersect for a review of the current relevant science addressing cancer-related pain (CRP) among Hispanics (Part III); describing disparities in treating CRP in this population. The chapter summary articulates gaps that provided the foundation for the current study's scientific exploration of the experience of CRP among New Mexican Hispanic/Latinos. Part I: Review of Cancer Pain Treatment An overview of types of CRP was provided in Chapter I and will not be repeated here. It is important in understanding the experience of CRP among Hispanics to situate such exploration within the context of what are well-established and growing bodies of evidence available to guide practitioners in managing CRP. National and professional guidelines have been crafted summarizing the state of knowledge around best practice for addressing CRP and strategies to guide systems in monitoring pain-related outcomes 18 (Agency for Healthcare Research and Quality, 2001; Gordon et al., 2005; JCAHO, 2000; National Comprehensive Cancer Network, 2009; Oncology Nursing Society, 2008). Initial efforts came from the Agency for Health Care Policy and Research (now known as the Agency for Healthcare Research and Quality - AHRQ) in the early 1990s with published practice guidelines for managing acute pain and a separate guideline for cancer-related pain. These references are now archived and not recommended for practice as knowledge has advanced and the guidelines no longer represent current evidence-based practice. More recent guidelines have been grounded in the evidence, demonstrating best practice (Abu-Saad, 2006; APS, 2014; NCCN, 2014; ONS, 2014). All of the pain guidelines and recommendations for practice make the following assumptions, that the majority of CRP is treatable with noninvasive measures; interventions are directed by acceptance of the individual report of pain; acknowledgement that pain is multidimensional; and finally, that providers are accountable to address such pain as part of routine care (Paice & Ferrell, 2011). This discussion provides a synthesis of these guidelines and is organized to address assessment, interventions, measuring outcomes and institutional accountability. Assessment and Education Health care providers should assess patients' CRP and treat it promptly. This requires regular and ongoing assessment. In a recent review, Kwon (2014) reported that pain assessment is the cornerstone to intervention and that providers admit it is the weak link in pain care. The initial assessment is the most comprehensive, including all of the elements outlined in Table 2. 19 Table 2 Summary of Pain Guidelines and Practice Assessment Education Treatment Institutional Accountability Patient Experience: Initial Assessment • Intensity • Location • Quality • History of Pain-timing, onset, • Aggravating Factors • Alleviating Factors • Medication Regimen • Patient goals re: pain care • Interference with activities • Other symptoms • Physical Exam • Response to therapy  Relief  Prior Therapy • Meaning/ Consequence for patient/family • Cultural beliefs • Spiritual religious considerations • Psychological • Medical/Diagnostic • Etiology/ Pathophysiology Ongoing Assessment • Comprehensive at 24 hours after new plan implemented; • Ongoing based on analgesic effect Frequency of dose titration. • Adjustment of plan based on reassessment • Reassure pt/family that most of pain can be relieved safely and effectively. • Pt/Family part of pain plan of care and active participants in management • Ongoing professional education in pain assessment & management • Continual processes with focused education as treatment plan changes or is modified • Continual improvement and reestablishment of patient goals. Multimodal Approaches • Pharmacologic as guided by the World Health Organization Analgesic Ladder (1996) Oral route preferred • Pharmacologic interventions/Medication selection detem1ined by patient preference, pain intensity and goals of care. • Use of long acting and short acting opioids and co-analgesics Safe Handling • Attention to issues of diversion Interventional Strategies • Reserved for more complex pain syndromes. Consultation as indicated. • Epidural/Intrathecal • Regional blocks • Neuroablation • Neurostimulation • Concurrent management of opioid side effects. Physical Therapies • Physical Therapy • Orthotics • Assistive Devices Psychological Support • Integration of nonpharmacological Interventions • Cognitive/Behavioral • Evidence-based Integrative Therapies • Assessment recorded and visible to all providers • Selected assessment tools demonstrating adequate psychometric testing • Interventions to be based on a complete/ comprehensive assessment of multiple domains of the pain experience - physical and emotional. • Interventions based not only on intensity report but appropriate to type of pain and treatment setting • Standardized documentation format and assessment measurement • Evidence of shared decision- making and individualized treatment plan • Monitoring for evidence- based pain treatment strategies • Develop and make available data from internal performance measures focused on cancer pain assessment and management. Source: Abu-Saad, 2006; APS, 2005; NCCN, 2014; ONS, 2011; Paice & Ferrell, 2011 20 A complete history of the pattern, character, intensity, and location along with a medication history and identifying factors that make the pain better and /or worse are essential (WHO, 2000). Much literature exists around assessment tools particularly in how to quantify pain intensity (NCCN, 2014). Patients and caregivers are considered key members of the treatment team, customizing interventions based on their values and beliefs (Gordon et al., 2005). Educational efforts include a review of common misconceptions about pain, including fear of addiction, assessment of barriers and referral to appropriate resources, again recognizing the impact of pain on many domains (Lovell et al., 2014; Padilla, Ferrell, Grant, & Rhiner, 1990). Finally patients and family members must receive information for any specific skills needed to most effectively and independently manage pain and its relief. Guidelines and directives also target education toward professionals responsible for providing competent pain care. Curricula have been developed both for the academic settings as well as professional continuing education, with the intent of developing entry-level competence (AACN, 2010; Abu-Saad et al., 2006; IASP, 2014b). Treatment There are many layers of complexity surrounding appropriate treatment of CRP. The mainstay of all treatment plans begins with pharmacological therapy. Choice of analgesic, schedule, route, and dosing are based on the WHO analgesic ladder (Figure 2) as well as collaboratively identified treatment goals and the underlying disease process. Kwon (2014) reported that when implemented appropriately, the WHO ladder was effective in addressing pain from 71-100% of the time. Three broad categories of Figur pharm physi anti-i (NCC indic opioi frequ Gene appro nonph evide re 2. World macological iological asp inflammatory CN, 2014; O ated for pain Guideline ids as the fou uency of dose erally pain le oach to mana Augmenti harmacologi ence- based ( Health Orga agents are o pects of the p y agents or a ONS, 2011). n at this leve es for pain of undation of a e escalation evels of great agement exp ing opioids w ical strategie Abu-Saad, 2 anization Pai organized to pain itself. N acetaminoph Short-acting el. f moderate a pain regim (titration) is ter than four panding beyo with co-anal es are also de 2006; NCCN in Managem address both Nonopioid an hen are sugg g opioids and and severe in men. Percent s driven by th r on a 0-10 s ond using op lgesics (adju esigned arou N, 2014; ON ment Ladder, h level of pa nalgesics co ested as a st d co-analges ntensity reco tage of chang he level of s scale will yie pioids exclus uvant agents) und pathophy NS, 2011). A , 1986. ain intensity onsisting of n tarting point sics may or m ommend shor ge in dosing everity repo eld a multim sively. ) and ysiology and Antidepressa 2 and nonsteroidal for mild pai may not be rt acting as well as orted. modal d are ants and 21 in 22 anticonvulsants have shown benefit in treating neuropathic pain, as have topical agents such as Lidocaine patches that can access pain pathways through different mechanisms. Corticosteroids also demonstrate a synergistic effect when used with opioids (NCCN, 2014). Pain is not treated exclusively with pharmaceutical agents and must simultaneously address other domains. Psychological support and education are paramount regardless of the pain intensity. Patients and caregivers need to be given the sense of a collaborative team approach to their experience and believe that their pain will be aggressively addressed. There is an extensive supply of nonpharmacological resources that should be considered in tandem to pharmacological ones. Simple physical positioning, use of heat and ice, and physical therapy are common examples. Additional examples demonstrating an acceptable level of evidence include psycho-educational interventions, use of acupuncture and acupressure, relaxation techniques, and distraction training (NCCN, 2014). A final category of treatment intervention is reserved for a small segment of cancer-related pain conditions. Invasive approaches are rarely necessary but epidural or intrathecal infusions of analgesics and anesthetics for example play a critical role in relieving some of the more complex pain issues. More extreme measures include neuroablation or neurostimulation for well-localized pain and decisions regarding efficacy need to be made by experts in the field; many of these procedures have a limited role in CRP (NCCN, 2014; Paice & Ferrell, 2011). Treatment of CRP is complex and requires rigorous assessment and rapid intervention. A collection of evidence-based therapeutic tools has existed for many years 23 now, assisting practitioners in both pharmaceutical and nonpharmacological methods of treating cancer-related pain. Individualized care requires an interdisciplinary team of experts from many fields with specialty knowledge and cultural sensitivity to assist those struggling with the most common cancer related-symptoms. Despite these resources barriers and misconceptions persist. Sustaining the effort of high quality competent pain care is the responsibility of individual professionals but also health care systems. Pain care is not possible without the collective efforts of healthcare systems, professionals, patients, and caregivers working together. The following section addresses the institutional responsibility and role in delivering and monitoring quality pain care. Institutional Accountability Standards for quality improvement and performance measures in pain care have been published to guide institutions in setting benchmarks and expectations. Systems have been developed to guide institutional accountability, to establish formal evaluation mechanisms with required indicators for accreditation, and to monitor processes within the organization (The Joint Commission, 2014). Not only are acute care settings responsible for such compliance but also long-term care, outpatient healthcare, home care, hospice and health care networks. (APS, 2005; Berry & Dahl, 2000). The specific components of initial and ongoing assessments are also analyzed using performance indicators. Evidence of strategies for ensuring a smooth transition across health care settings in quality pain management must also be evident (APS, 2005). Table 2 has summarized indicators established to quantify method, frequency and direct accountability for assessing and documenting pain. 24 Again, making strides at impacting cancer-related pain requires a multilevel approach. Without systems accountability, actions at the level of the individual will be protracted. Financial gains by such progress can be measured in health care cost savings and efficiency in resource consumption (Berry & Dahl, 2000). Carefully and competently managed pain potentially reduces unnecessary readmissions, visits to emergency rooms or clinics and potentially reduces lost productivity. As organizations were developing guidelines for pain assessment and management, various individual provider groups began to follow with their own professional position statements and claims of provider accountability; a critical step in shifting the paradigm and assuming responsibility themselves. For example, both the American Pain Society and the Oncology Nursing Society published such directives (APS, 2004; ONS, 2014). Through the development of evidence-based guidelines, professional positions, and regulatory mandates there has been an emergence of liability for undertreatment and mismanagement of pain (Frank-Stromborg & Christiansen, 2000; Warm & Weissman, 2002). Nurses, physicians, and systems have been held accountable for breeching their duty to provide pain care based on established standards resulting in harm or suffering (Berry & Dahl, 2000; Frank-Stromberg & Christianson; JCAHO, 2000; Shapiro, 1996; Valglienti & Grinberg, 2004). As much as pain educators, practitioners, and advocates have stood up for proactive and competent pain management for persons with CRP, others raise valid concerns about how to balance safe effective care within a climate of diversion and unintentional prescription overdose. The growing use of prescription medication for recreational purposes and associated deaths have understandably caused greater scrutiny 25 of regulatory and policy guidelines around professional training, prescribing practices and public education (Ornstein & Weber, 2012). This coexisting and epidemic public health concern has created federal and state level investigation. The reality that drug overdose has increased by 118% from 1999 to 2011 is cause for serious reflection on opioid prescribing practices. Those needing prescription medication for CRP are potential at risk of further undertreatment (Center for Disease Control (CDC), 2014) as providers are reluctant to prescribe opioids. Among the pharmaceutical overdoses in 2011, 74% involved opioid analgesics, mainstay agents for treating CRP (CDC). These very real events have cast a shadow of concern for equitable effective care for CRP and augmented barriers to adequate treatment. This section has summarized treatment of CRP from various levels of influence and responsibility as described in professional guidelines and national recommendations. In spite of the scientific evidence that treatment exists to address the majority of such pain, many persons with CRP continue to be under treated or mistreated (van den Beuken-van Evergingen et al., 2007). In their systematic review these authors found that pain was not selective by cancer type. Although stage of disease did impact the prevalence of pain, type of cancer did not demonstrate appreciable differences in pain (van den Beuken-van Evergingen et al.). Having the knowledge and means clearly is not all that is needed to ensure acceptable management of CRP. Chapter I reviewed common misconceptions that fuel the undertreatment of pain. The following section describes prevalence and characteristics of undertreatment. 26 Review of Barriers and Undertreatment As outlined above, CRP is prevalent across the cancer care continuum and estimates of undertreatment unfortunately persist. Reports of undertreatment have ranged from 40-50% among those with CRP (Deandrea et al., 2008; Paice & Von Roenn, 2014). Examining the prevalence of undertreatment as well as isolating predictors and risk factors is complex and multilayered. Several level factors are described as contributors to the undertreatment of pain and barriers to pain relief. These are described as they relate to individuals, providers and structural and public health factors. The following section provides a brief overview of these barriers presented as they contribute to undertreatment of CRP. Patient Level Factors Deandrea and colleagues (2008) conducted a systematic review of studies worldwide published between 1987-2007 examining undertreatment of CRP. Of the 26 selected studies appraised, there was a 43% mean proportion of undertreatment of CRP. These researchers further attempted to shed light on some of the predictors of undertreatment. Contrary to other studies, this systematic review concluded that age or gender does not play a consistent role across studies in predicting CRP undertreatment (Cleeland, 1994; McNeill et al., 2004). Several issues emerged as stronger determinants of undertreatment, the majority of which are related to patient demographic features:  Geography - poorer countries fared worse;  Socioeconomic variables - lower economic status of patients predicted greater undertreatment; 27  Less ill (measured by performance status) and earlier stage of disease - reported greater undertreatment;  Discrepancy between physician and patient estimate of pain intensity - undertreatment more prevalent;  A noncancer specialty treatment setting - greater undertreatment Knowledge level factors have been described to influence undertreatment. For patients there may be a lack of understanding of medication usage and misconceptions of side effects (Kwon, 2014). One may reasonably argue that these level factors, while usually affiliated with the person with CRP, may indeed be better suited as a barrier due to lack of provider-patient communication and education. In other words, people may have knowledge limitations because of poor information sharing from providers. Challenges around communication have often been cited as barriers and sources of undertreatment (Kwon, 2014; Paice & Ferrell, 2011). Various reasons may be underlying such disparity including a desire to not distract the focus of care away from treating the cancer, language barriers, not wanting to complain, wanting to be a "good" patient, holding a fatalistic belief about pain, or not wanting to displease their provider and appear to be complaining unrealistically (Cohen et al., 2008; Kwon; McNeill et al., 2003; Paice & Von Roenn, 2014). Discrepancy between provider and patient estimate of pain, access to specialty care and lower economic status might be indirectly linked to communication, language and culture. Deandrea et al. (2008) did not pursue such an analysis in their review. McNeil and colleagues (2004) found education to be a predictor of undertreatment; those lacking higher education reported more severe current and average 28 pain ratings than those that had received postsecondary education. Portenoy, Ugarte, Fuller, and Hass (2004) uncovered similar predictors when surveying pain reports among Whites, Hispanics and African Americans. In their study, African Americans and Hispanics reported greater pain. Interestingly income and education demonstrated the strongest association with disabling pain. Minority status was not a predictor of pain severity in this sample, but the minority participants tended to be of lower income and were less educated. In a secondary analysis of 964 hospitalized adults, McNeill et al. (2004) explored correlations between several patient-level variables and pain intensity and interference (pain intensity's ability to interfere with usual activities). One specific research aim related to differences that may exist in pain management outcomes by age, ethnicity, gender, or educational level. Their analysis revealed factors that predicted poorer pain management including age over 65 years (p = .04), non-White (p = .02), and education of high school or less (p = .025). These findings are somewhat contrary to those reported by Deandrea et al. (2008), specifically with regard to age. Other patient-centered factors contributing to undertreatment relate to past experience, meaning of pain, as well as individual, societal, and community-based norms around pain, and its ramifications (Fairchild, 2010). Well-known misconceptions continue to plague management of CRP including correctly operationalizing tolerance, dependence, and addiction, knowledge about dosing, scheduling of medications, titration, fear that pain discussions with providers will overshadow cancer treatment and not wanting to use pain medications too soon for fear of a ceiling effect (Cohen et al., 2008; McNeill et al., 2003). Negative beliefs about pain medications, often corrected through 29 education, have been associated with lower medication adherence (Kwon, 2014; Liang, Yates, Edwards, & Tsay, 2008). Conversely the same study found that belief in one's ability to successfully take medication (opioid self-efficacy) predicted pain relief (Liang, et al.). Another patient-level factor impacting pain is psychological distress (Kwon, 2014). Higher scores on depression scales have demonstrated greater pain as well as anxiety, hostility, mood challenges and anger. Such emotional factors were correlated with poorer medication adherence as well (Kwon). In a meta-analysis, Devine (2003) reviewed 25 psychoeducational studies published between 1978-2001. Although there was some difference found in effect on pain outcomes, serious methodological variations limit generalizability. Others have cautioned that educational endeavors, while helpful to enhancing self-efficacy, have a threshold and compete with other aspects described here such as meaning of pain, and cultural and societal influences (Oldenmenger, Smitt, van Dooren, Stoter, & van der Rijt, 2009; van der Peet et al., 2009). While differences can be found in pain management knowledge, effects on quality of life over time were not sustained through psychoeducational interventions. Devine takes the position that psychoeducational strategies range in efficacy, depend on multiple factors and should only be used as an adjuvant to analgesics. These studies have highlighted the various factors associated with undertreatment that are primarily focused at the level of the patient. Several predictors are at the level of the individual such as age, income, education, ethnicity in some cases, and location of care. Reflections on some of the other reasons for undertreatment can be linked to 30 insufficient provider knowledge, specialty training, academic preparation or education and biases. The relationship between provider and patient level factors is largely absent from the discourse of undertreatment and remains largely unexamined. Rather, they have been held as parallel yet isolated entities. Provider-level Factors Unfortunately provider-driven deficiencies continue to play an important role in the undertreatment of CRP. Provider and system issues contribute to undertreatment and blend into the discussion of barriers or misconceptions around pain management already summarized in Chapter I. Now they will be discussed in relation to undertreatment. Delivering quality care requires a competent and complete assessment. Without regular, timely assessment using valid and culturally appropriate tools, patients are at risk for undertreatment (Fairchild, 2010; McNeill, Sherwood, & Starck, 2004). Olenmenger and fellow researchers (2009) examined the factors hindering adequate pain management in 40 published studies addressing barriers. Reported most frequently by physicians and nurses were inadequate provider pain assessment and insufficient knowledge of management. Kwon's (2014) review had similar findings with physicians acknowledging first, that CRP is undermanaged and had largely remained unchanged overtime. In addition the most common provider-related factor reported was poor pain assessment, followed by a lack of knowledge, reluctance to prescribe and concerns with regulatory, legal and administrative constraints. Also cited were nurses' limited knowledge and reluctance to administer opioids (Kwon, Paice, & Von Reonn, 2014). In concert with this self-assessment by providers, when hospitalized patients were interviewed in Sherwood and colleagues (2000) qualitative study, they cited lack of 31 provider education and competence in pain management as contributors to poor pain care. Reasons for poor care again are linked to misconceptions, lack of knowledge about pain medications, dosing and timely titration (Fairchild, 2010; McCaffery & Pasero, 1999; McNeill, Sherwood, & Starck, 2004). Similar to attempting patient-directed educational interventions, researchers have directed attention to enhancing provider competence in pain care. Using outcomes such as changes in patient pain intensity, congruence between worst reported pain intensity and most potent medication taken (Patient Management Index) and knowledge and barriers to pain management researchers found little consistent influence by provider-aimed interventions in improvement in cancer pain management (Oldenmenger et al., 2009). Other studies have found a change in knowledge, however, there is no study demonstrating that improved awareness and understanding yielded improved pain outcomes (Huth, Gregg, & Lin, 2010; Kwon, 2014; Vallerand, Collins-Bohler, Templin, & Hasenau, 2004). There was some hope that emerged in a systematic review conducted by Cummings and colleagues (2011). While few, a handful of provider-directed knowledge focused interventional studies demonstrated some impact on patient pain intensity ratings. The authors describe several very specific components of successful programs, none of which targeted ethnic populations. Overall findings in these recent critical appraisals are provocative in light of the directive posed by leading organizations that such multidisciplinary approaches will improve cancer pain care (APS, 2005; NCCN, 2014; WHO, 1986). Although these reviews discuss the challenges of interpretation based on methodological variability, attempts to validate international and national assumptions regarding quality pain care 32 have not been consistently substantiated. Speculation as to the causes of such negative findings include a lack of international consensus on end-point outcome measures, resulting in a multitude of dependent variables across studies thus making a collective interpretation difficult. Another critical factor is that many studies do not address multidisciplinary roles within the same intervention such that other disciplines' roles may have served as confounding variables, thus obscuring the intervention's main effect (Oldenmenger et al., 2009). Thus far the discussion has summarized patient and provider-level factors that contribute to the undertreatment of CRP. Embedded within both of these sources of unsatisfactory pain care, are systems and regulatory factors. The following section briefly highlights some of these contributors. Structural System Level Factors Patients and providers interact within national, state and local systems of regulation. The national and state climate around pain care has vacillated over the years from concerns with undertreatment to overtreatment. Currently, there is a resurgence of concern with overprescribing of opioids, which was reviewed earlier in this chapter. The climate surrounding such concerns puts cancer patients' pain care at risk. Factors external to providers have been targeted as contributing to undertreatment that include economic, regulatory and insurance. Forces continue to stress that system-related impediments must be addressed and encourage quality improvement efforts (Gee, 2003; IOM, 2011; The Joint Commission, 2014). 33 Kwon (2014) summarized institutional level variables such as access to pain specialists as a barrier to CPR management. Services sought of specialists ranged from neuroablative procedures to psychosocial support to nonpharmacological pain resources. Reimbursement for pain services is often inadequate and tied to procedural interventional care, a strategy reserved for a small component of cancer pain conditions (Gaskin & Richard, 2012; Kulich & Loeser, 2011; Paice & Ferrell, 2011). As part of reimbursement, there is less reward for providing cancer pain care and more on cancer treatment (Wong, 2013). Oncologists do not receive additional reimbursement for managing toxicities or symptoms; instead they are paid for giving expensive therapy. Seventy percent of revenue comes from cancer treatment products released in the last 10 years, and insurance regulations require payment for any and all FDA approved drugs regardless of outcomes (Newcomer, 2012). Newcomer suggests changing the current incentives for cancer care in a more balanced fashion, less weighted on expensive drugs and more on clinical quality of life and patient outcomes such as pain relief. The Pain Standards provided by The Joint Commission (2014) require institutions and affiliated clinics to standardize their approach to providing an individualized comprehensive assessment, reassessment, management, and referral to specialists if the provider is not able to provide the service. In addition, they require institutions to provide pain education to nurses and physicians. The emphasis of these standards is on assessment and education and less on sustaining the effort of any improvements in pain care. In summary, there are reimbursement-related incentives that deemphasize pain care, institutions are challenged to establish ongoing means to evaluate effects of 34 professional training and education, and ultimately have limited efforts toward evaluating patient pain outcomes. In addition, there are reluctance and limited resources for providers to refer to specialists for pain care, and this care is most often reimbursed for interventional procedures rather than a full-service pain management program. Some of the most common barriers to adequate pain care have been summarized here, primarily addressing patient, provider and system level factors. A shared denominator for both professionals and patients has been limited or poor assessment, knowledge deficits, and widespread misconceptions about pain and its management. Barriers to effective pain care are prevalent, affecting the population with CRP. Large population-based studies have identified gender, stage of disease, site of care, educational level, and communication between providers as some of the major predictors of undertreatment (Deandrea et al., 2008; Fairchild, 2010; McNeill et al., 2004). Neither ethnicity nor culture has consistently surfaced in these reviews as explicit risk factors for inadequate care but possibly indirectly relate through other variables such as site of care, educational level, and communication barriers. The following section introduces Hispanic/Latinos in the United States and specifically in New Mexico, characterizes health outcomes in this population, and discusses cancer-related pain among this population. Part II: Review of Hispanics and Health Challenges of Defining Hispanics/Latinos in Health Research Central to conducting research with any group is determining representation as a label or classification. The term Hispano actually emerged in the mid-1850s as Spanish and Mexican descendants staying in the United States after the Guadalupe-Hidalgo peace 35 treaty in 1848 became US citizens and intermarried with non-Hispanic Whites and American Indians. Periodic influxes of Mexican and Spanish immigrants to the US can be traced to waxing and waning historical labor needs, such as building railroads in the 1880s and farm labor needs in the 1940s (Marín & Marín, 1991). Hispanos are recognized as the ancestors of today's 5th- and 6th-generation Hispanics (Marín & Marín). In fact, the term is one of many used to describe people with Latin and Central American or Spanish national roots. In addition to Hispanic, other descriptors exist for persons of a similar ethnic group such as Latino, La Raza, Spanish-speaking, Latin, Hispanoamericano, and Chicano (Bathum & Baumann, 2007; Marín & Marín). For the purpose of census reporting the Office of Management and Budget (OMB) defines Hispanic or Latino as "a person of Cuban, Mexican, Puerto Rican, South or Central American or other Spanish culture or origin, regardless of race" (US Census Bureau, 2010, p. 2). The Intercultural Cancer Council (ICC), an advocacy organization housed at Baylor College of Medicine, dedicated to eliminating unequal cancer care in the United States through policy and research efforts, has similarly adopted the term Hispanic/Latino. ICC concurs that such a category subsumes a collective of cultures and origins that span the field of racial classifications and subgroups, acknowledging ‘Hispanic/Latinos' as a "mosaic of cultures" (n.d.). The New Mexico Department of Health (2007) as well as the OMB uses categories of ethnicity for the purpose of identifying and trending disparities in health and access to care. There are two categories for reporting and categorizing ethnicity - Hispanic or Latino and Not Hispanic or Latino (US Census Bureau, 2010). "Hispanic" is the category used to capture those residents who see themselves of this heritage, nationality, lineage or country of birth of those 36 persons or ancestors before arriving in the US. Finally, Marín and Marín (1991) suggest, for the purpose of clarity, that in health-related research the term Hispanic be used to signify persons residing in the United States that may have been born or find ethnic origins in Spanish-speaking Latin America countries or Spain. These authors make the crucial observation that labels are symbols of self-identity and a given designation over another may be preferred, still suggesting one way to operationalize Hispanic ethnicity is through self-identification. This approach bears a cautionary note: Not all people will respond positively and may prefer a different classification. Another limitation to ethnic labeling is that academia or health care institutions, or any other system of power may construct one meaning, which may not necessarily reflect the same meaning by those placing themselves in that grouping. Finally, there has been some evidence for generational diversity in labeling. Marín and Marín found the majority of first-generation respondents (87%) preferred the label ‘Mexican' while the majority of the second-generation respondents (81%) chose "Mexican-American." These figures are somewhat dated, but it is important to consider the boundaries that such labeling creates as a choice of preferred self-identify, generational preferences, and whether the lens is the researcher's or a member of the given community. Conducting research with a population different from one's own calls for sensitivity to the limitations of language, terminology, and characterizations. Accepting these limitations and in an effort to maintain consistency with these various recommendations, I use the terminology Hispanic/Latino or Hispanic Latino throughout this paper when speaking of a cultural identity shared by participants in my research. 37 Hispanic Demographics in the United States Hispanics are the fastest growing ethnic group in the United States and are affiliated with all of the US Census Bureau race categories (White, Black or African American, American Indian or Alaska Native, Asian, Native Hawaiian or Other Pacific Islander). Hispanics completing the 2010 census reflected subgroups varying by cultures and origins. For example, 63% of US Hispanics are of Mexican origin, 9% are Puerto Rican, 3.5% are Cuban, and another 13.5% consider themselves of Central or South American heritage (US Census Bureau). Hispanics represent 16% of the total population of 308.7 million people in the US, increasing nearly 10% since the 2010 census data. These figures are predicted to continue increasing with the Hispanic populations growing four times faster than the general population such that by 2050 Hispanic/Latinos will account for nearly 30% of this nation's population (US Census Bureau, 2011). New Mexico and Hispanics Hispanic diversity is further illustrated in the state of New Mexico. In contrast to national figures of Hispanic/Latinos representing roughly 16% of the over 308 million people in this country, Hispanic New Mexicans account for 47.3% of the states' residents (US Census Bureau, 2014). Whites not of Hispanic origin in New Mexico represent only 39.4% of the population as compared to 63.6% nationally. Table 3 provides a summary of the various ethnic groups in New Mexico, accounting for the remaining percentage of residents. The largest subgroup of New Mexico Hispanics selects Mexican ethnicity. However,there is a substantial number classified as "Other Hispanic or Latino" (17.0%). In New Mexico, this is thought to represent the long-term Hispanos who trace their 38 Table 3 Hispanic Population Comparison ancestry to Spain rather than Mexico. The ethnic diversity among New Mexicans claiming Hispanic or Latino descent is a potentially significant factor when making assumptions about cultural beliefs and practices in research efforts. In addition to ethnic influences, geographic and economic factors play a role in experience and health outcomes. New Mexico is uniquely situated in this regard, being only the 45th most densely populated state in the United States. Although the state has a large landmass, it has one of the lowest per capita densities with approximately 17 persons per square mile. A point of comparison is the United States land mass with an overall density of 87 people/mile (US Census, 2010). New Mexico is a rural state with just over two million residents. Living in and around Albuquerque are approximately 662,564 of its residents, making it the state's largest urban center. Significant issues of access to health providers and specialists exist Total Population NM % U.S. % Hispanic or Latino (of any race) 46.3 17.1 Mexican 28.7 63.0 Puerto Rican 0.4 9.2 Cuban 0.2 3.5 Other Hispanic or Latino 17.0 24.3 Non-Hispanic or Latino 53.7 62.6 Black or African American Alone 2.5 13.2 American Indian and Alaska Native alone 10.4 1.2 Asian alone 1.6 5.3 Native Hawaiian and Other Pacific Islander Alone 0.2 0.2 Two or more races 2.4 2.4 Note. Adapted from U.S. Census Bureau, 2011 39 for the remaining 70% of the state living in more distant communities. There are only seven cities in the state that have a population greater than 30,000. Although nearly 40% of the Hispanic population lives in the urban area of Albuquerque, statewide there are proportionally greater numbers in the northern regions than Whites. Population distribution is an important issue when addressing the burden of disease, specifically cancer in New Mexico. Incidence rates may be higher for the more populated counties but the burden imposed will vary by locality and access to care (New Mexico Department of Health, 2007). Economic variables also impact health-related outcomes. New Mexico is one of the country's poorest states with 19.5% living at or below the poverty level (14.9% nationally). In New Mexico, 25% of working age Hispanics are at or below the poverty level, with those younger than 17 representing even higher poverty rates (37%). Hispanics in New Mexico make an average income 70% of their non-Hispanic counterparts. Nationwide, 34% of Hispanics lack health insurance compared to 10% of Whites and 20% of African Americans. Twenty-five percent of New Mexicans do not have health insurance, compared to 11% of non-Hispanic Whites and higher uninsured rates among the younger residents - those18-24 years of age (Pew Research, 2014). Age is especially relevant in New Mexico where approximately 50% of Hispanics are below the age of 25 in contrast to Whites with over 70% above this age (Pew Research, 2014; US Census Bureau, 2011). With these variables of more challenged health care access, lower socioeconomic position, and a large number of uninsured residents, the potential for inferior health 40 outcomes exist for New Mexico Hispanics. Situating Health Care Research with Hispanics in the Context of Cultural Norms Collapsing a group of individuals with widely ranging stories of identity and history into a stereotypical collective is not an uncommon occurrence in health science research. Nonetheless, some broadly shared cultural values have been described in the literature. I will discuss some of these principles in terms of how they may or may not inform research endeavors and clinical practice. Culture is a central factor when examining screening behaviors, reactions to disease, and approaches to seeking care (Clark & Redman, 2007; Freeman, 2004; Lorig, Ritter, & González, 2003). Cultural norms interface with a variety of health-related issues (Hawley, Chavez, & St. Romain, 2007; Juarez, Ferrell, & Borneman, 1999; Marín & Marín, 1991; Mayo, Sherrill, Sundareswaran, & Crew, 2007; Mulvaney-Day, Alegria, & Sribnery, 2007; Ruiz, 2007; Sammarco & Konecny, 2008). Among Hispanic communities, social support consistently correlates with health, adaptation, and accomplishment (Duggleby, 2003; Gresenz, Rogowski, & Escarce, 2009; Mulvaney-Day, Alegria, & Sribney; Negy & Woods, 1992; Ruiz). The concept of familismo is a central support resource. Familismo reflects a welcome commitment (rather than burden) of caring for family over one's self. The extended family takes precedence over the individual, enhancing family solidarity (Duggleby; Vilarruel, 1995). Marín and Marín (1991) refer to this concept in much the same way as "familismo": A strong identification with one's family, grounded in loyalty, cohesion, and mutual responsibility for each 41 other. The sharing of burdens serves to protect or minimize life stressors. The foundation of this commitment appears to be grounded in three principles: • Sense of obligation to provide support (emotional or material) • Trust in family for support • Family as modeling behavioral and attitudinal position or point of reference Once traditionally defined as biological family relations, familismo has broadened to include friends and neighbors (comadres and compadres) due to a geographical barrier and difficult access to more immediate family members (Marín & Marín, 1991; Ruiz, 2007). These individuals hold the same expectations and benefits as blood relatives. Although members of this support network have broadened over time, the value itself has transcended generations and number of years in the United States to varying degrees (Marín & Marín, Negy & Woods, 1992). Researchers must consider and respect the notion of familismo and how its emphasis among Hispanics may impact a particular topic or behavior related to health or illness. The current study does not aim to directly gather data from family members' but remembering that family and support are influential factors in the experience and decision-making for Hispanic persons living with CRP (Juarez, 1996; Juarez et al., 1998; Villarruel, 1995; Villarruel & Ortiz de Montellano, 1992). Confianza, (trust in another), and personalismo, (personalized, individualized, and respectful caring) are other cultural norms that are often severely lacking as Hispanics encounter the health care system and providers (Clark & Redman, 2007; Duggleby, 2003; Larkey, Hecht, Miller, & Alatorre, 2001; Villarruel, 1995). Fatalismo, the assumption that a condition or symptom is inevitable, or naturally associated with an underlying 42 condition such as cancer, or the necessary burden of such suffering as part of a religious penalty, is yet another cultural perspective that may influence outcomes (Larkey et al., 2001). Western medicine is not perceived as trustworthy or personalized and is often only consulted after self, family, friends, or traditional healers. Marín and Marín (1991) further characterize common aspects of Hispanic culture, summarized in Table 4. Cultural competence, which requires cultural humility, or a willingness to look at the role of self - beliefs, values, past experience and assumptions about others, is critical when engaging with persons of varying backgrounds and histories (AACN, 2010). Cultural competence is said to be operationalized when "respect for the inherent dignity of every human being, whatever their age, gender, religion, socioeconomic class, sexual orientation, and ethnic or cultural group is being demonstrated; when rights of individuals to choose their care provider, participate in care, and refuse care, are respected" (California Endowment, 2003, p. 102). Cultural competence implies that the Table 4 Common Features of Hispanic Cultures Characteristic Description 1. Allocentrism Collective approach to objectives, attitudes and decision-making; interdependent, influenced by group rather than individual/self; trust and confidence in the group. 2. Simpatía Notion of cooperative, friendly encounters; engaging respectfully and in harmony in relation with others. 3. Respecto Positionality - power or influence of others, relative to self; deference to those perceived as powerful by profession or economics. Valuing support to authority or those in charge. 4. Personal Space Preference for closer sharing of space; less distance during personal encounters. 5. Time Orientation More present-focused in terms of planning, punctuality and efficiency; flexible position on time Note: Adapted from Marín & Marín (1991) 43 researcher or provider acknowledges their own personal biases, remains open and aware of individual variations, not making assumptions or generalizations based on stereotypes or their own biases. Having said that, the characteristics summarized here do appear to be important cultural threads shared among many Hispanics, yet these constructs are not necessarily adopted by all. Without typecasting but instead remaining aware and respectful of the potential impact these play on the research process is cause for thoughtful construction of the design, interview encounters, and analysis processes. Hispanic Health Outcomes and Disparities Hispanics are the fastest growing minority group in the US and as a population they are burdened by disparities in health care and outcomes when compared to non- Hispanics (Cook, McGuire, & Zuvekas, 2008; Mitrani, 2009). Hispanics continue to experience wider gaps in insurance, have higher levels of underinsurance, and access to care is limited often by language and cultural issues (Cook et al.). The Institute of Medicine (IOM) defined disparities in healthcare as "racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriateness of interventions" (IOM, 2003, p. 32). Some evidence suggests improvements in health outcomes, such as reduced rates of cholesterol control among ethnic minorities. However for many other chronic diseases, public health issues and prevention and early detection efforts, Hispanics continue to lag in attaining improved outcomes (Agency for Healthcare Research and Quality, 2008; IOM, 2003). Examples of chronic diseases with disparate outcomes include diabetes, eye 44 diseases and vision impairments, and liver, stomach, and cervical cancers (Mitrani, 2009; National Center of Minority Health and Health Disparities, 2010). Serious public health conditions linked more to lifestyle include obesity, HIV/AIDS, sexually transmitted diseases, substance abuse, family and intimate partner violence, as well as an array of mental health issues that may correlate with any of the above conditions (Mitrani). The facts remain that minority groups, inclusive of Hispanics, are less likely than Whites to have health insurance, have fewer choices in care, are less likely to have a primary provider, and are more likely to receive care in emergency rooms (Dayer-Berenson, 2011). Freeman (2004) reminds researchers and healthcare providers that cancer inequities occur from a complex set of factors that are socially, economically, and culturally rooted within systems of government, community, family and health care delivery. As previously discussed, culturally shared knowledge and behavioral norms are important variables in health care and individual care-seeking behavior (Larkey, Hecht, Miller, & Alatorre, 2001; Negy & Woods, 1992). Gresenz and colleagues (2009) expanded the lens to include issues that may be intimately connected to access such as community dwelling, economic, institutional structures, and public policy. Their retrospective design considered not only predisposing factors such as nativity and acculturation, but also enabling factors such as insurance coverage and language. They examined contextual variables including the structure and capacity of the health care "safety net" (p. 1544). Interestingly, they found that social networks created in Hispanic communities served as a buffer to barriers, and, in fact, those living in areas more highly populated with other Hispanic immigrants or Spanish speakers had greater access to care. 45 Gresenz et al. suggest that providers and policy makers address the needs of Hispanics who have less access to such support networks within the community. Their findings do not negate previous reports but actually add to the complexity of disparity, access, and health outcomes. Findings reported in Unequal Treatment (IOM, 2003) identified the multiple layers and sources of factors contributing to health disparities. In addition to those already reported here, they include such issues as provider stereotyping and biases, time constraints of clinical encounters, cognitive and language barriers, and cost pressures. Parallel to Cook and colleagues' (2008) reference to the significance of language, Mulvaney-Day and colleagues (2007) describe its importance in forming social links, with both mental and physical health being deeply connected to family support. Use of language is social and not static or neutral, changing as is best suited for a given condition or audience (Allen & Cloyes, 2005). Census data in New Mexico reflect 28.7% of the 8.2% claiming to be foreign born do speak Spanish at home. However, only 9.4% speak "less than very well" (US Census Bureau, 2000). Language is yet another factor that impacts access and ultimately, health outcomes (Gresenz, Rogowski, & Escarce, 2009; IOM, 2003). The Agency for Healthcare Research and Quality (AHRQ) has targeted specific groups for health care research. These include racial/ethnic minorities, persons of low income; women, children, older adults, persons with disabilities, and individuals living in rural communities (2008). New Mexican Hispanics can simultaneously be members of multiple groups - living rurally, of low income, a member of an ethnic minority, disabled, and any of the gender/age categories. It is important to contextualize these variables in 46 the realm of cancer among New Mexican Hispanics. New Mexico accounts for 10,210 of the 1,665,540 new cases of cancer estimates for 2014 (ACS, 2014). Data from the New Mexico Tumor Registry (NMTR) report that although cancer incidence and mortality have been declining for New Mexican Hispanics, in 2007 Hispanics still accounted for 23% of new cases and 33% of the mortality rates (2014). Nationally, Latinos have lower incidence rates for the most common cancers; however, there are disparities among specific cancer sites, a fact for New Mexico Hispanics as well. Table 5 compares incidence and death rates between the leading cancers nationally, the Hispanic subgroup nationally, and New Mexican Hispanics. Similar to national figures, the top cancer sites among Hispanics are prostate, female breast, colorectal, and lung. According to Cancer Facts and Figures for Hispanics/Latinos 2012-2014, prostate, breast, colon/rectum, and lung cancers accounted for over half of all the new cancers among Hispanics nationally (ACS, 2012). The same is true in New Mexico. However, rates are lower for most of the most common cancers when compared to all national and all Hispanic cases. There is an exception in New Mexico with breast and prostate cancers. Relative to all new cancer cases diagnosed for each, the rates for both breast (33%) and prostate cancer (30%) represent a significantly greater proportion of the total new cases (NM Tumor Registry, 2014). While incidence rates are similar for all national Hispanics for lung and colon cancer, a slightly higher percentage will die of both of these among New Mexicans. Incidence and death rates for cervical cancer are higher among Hispanic women nationally and in New Mexico. (ACS, 2012; NM Tumor Registry, 2014). A cancer 47 Table 5 Leading Cancer Site Comparison of Incidence and Mortality Table adapted from the following sources: * percentage of all New Cases/Deaths nationally (ACS, 2014) ** percentage of Hispanic New Cases/Deaths estimates for 2012 (ACS, 2012) *** Incidence of new cancer and mortality - Hispanic only average number of new cases and percentage of each cancer reported in NM for the same time period (2006-2010) (NM Tumor Registry, 2014) 2014 Estimates (ACS, 2014) disparity exists for both stomach and liver cancer, with rates higher among Hispanics nationally and in New Mexico, than non-Hispanics, (ACS; NM Tumor Registry). Caution is recommended when generalizing about the data presented here as changes in trends and comparisons may reflect chance variation when comparing incidence and mortality (New Mexico Cancer Facts & Figures, 2007). Collectively divergence in cancer site, incidence and mortality by ethnicity may reflect unique concerns, barriers, and challenges for Hispanics receiving cancer care and management of cancer-related symptoms, including pain for Hispanics. Hispanics account for 27% of all new cases in the state and 32% of the cancer-related deaths. Cancer Site National Figures All Cases (%)* National Figures Hispanic Only (%) ** New Mexico Figures Hispanic Only (%) 2014 2012 2007 *** New Case Deaths New Cases Deaths New Cases Deaths All Sites 1,665,540 585,720 112,800 33,200 2388 954 Prostate 233,000 (27%) 29,480 (10%) 15,400 (29%) 1,600 (9%) 354 (30%) 59 (6%) Breast 232,670 (29) 40,000 (15) 17,100 (28) 2,400 (15) 397 (33) 72 (16) Lung & Bronchus 224,210 (14) 159,260 (27) 8,900 (8) 5,300 (16) 204 (8) 171 (17) Colon & Rectum 136,830 (8) 50,310 (9) 10,700 (10) 3,500 (11) 265 (11) 120 (13) Liver & Intrahepatic Bile Duct 24,600 (3) 23,000 (4) 3,100 (6) 2,700 (8) 77 (3) 66 (7) Leukemia 52,380 (4) 24,090 (5) 4,100 (4) 1,600 (5) 59 (3) 24 (3) Stomach <2% <2% 1,700 (3) 1,600 (5) 19 (3) 28 (6) Cervix <2% <2% 2,100 (4) <2% 25 (2) 12 (3) 48 Many of the findings discussed here reflect research that has occurred in the many years since Congress recognized that lower quality healthcare exists for ethnic minorities, even when insurance and income variables are controlled. The IOM committees' charge in 1999 and the resulting published recommendations have continued to direct and reinforce much of the ongoing research in the area of health disparities (HHS, 2011; IOM, 2011). Quantifying disparities and measuring the interplay of these complex and multilayered issues of health access, care, and outcomes by ethnicity is beyond the scope of this study. It is however, important to illuminate such aspects external to the individual experience, as they inform this exploration of CRP among Hispanics. The previous sections addressed contemporary knowledge related to treatment of cancer-related pain and its undertreatment while defining and portraying Hispanics and health care issues in the United States and New Mexico. Factors such as bias, assumption, culture, language, position, and power, which add layers to an already inadequately addressed common health issue for those with cancer, have yet to be discussed. The following section drills down another level, examining how cancer pain undertreatment intersects with minority populations, particularly Hispanic/Latinos and considers the implications for practice and research. Part III: Review of Cancer-Related Pain Among Hispanics Describing Undertreatment Although ethnicity did not stand out as a specific risk factor or predictor of undertreatment in recent systematic reviews (Deandrea et al., 2008; McNeill et al., 2004), there is a body of research that has isolated an unequal burden of pain by ethnicity 49 (Cleeland et al., 1997; Green et al., 2003; Hernandez & Sachs-Ericsson, 2006; Stephenson, Dalton, Carlson, Youngblood, & Bailey, 2009). Recognizing the limitations of these reviews posed by methodological incongruity, a discussion of the body of research illuminating disparities by ethnicity are brought to light here. In a classic study conducted through the Eastern Cooperative Oncology Group, Cleeland and colleagues (1997) described prescribing patterns and severity of CRP in minority outpatients. They found 65% of 281 minority participants did not receive guideline recommended analgesic prescriptions compared to a nonminority group (p < .001). Among their sample, Hispanics reported less pain relief than other minority groups and greater fear of medication side effects. Other studies demonstrated greater pain reporting as well as higher distress from pain in Hispanic populations (Anderson et al., 2002; Cleeland, 1994; Im, Guevara, & Chee, 2007; Ng et al., 1996; Todd et al., 1993). Hernandez and Sachs-Ericsson (2006) found that chronic pain was reported at a higher rate among Hispanics compared to Caucasians, and this difference was magnified in the presence of depression. Also, not exclusively related to cancer pain, Green and coworkers (2003) exposed ethnically rooted disparities that cut across types of pain, reminding providers, researchers, and health policy activists as well as the public that differences in care are not isolated to a particular type of pain. Inadequate and substandard pain care exists with a range of clinical conditions among ethnic minority groups. A study by Juarez and colleagues (1999) found poorer quality of life outcomes and greater pain reports for Hispanics when compared to Caucasian and African Americans all experiencing CRP. For example, when compared to Caucasian and 50 African Americans, Hispanics reported greater difficulty coping (p < 0.02); experienced more depression (p < 0.01); and greater family distress (p < 0.001). They also reported higher "worst pain" ratings (p < 0.03); "pain distress" (p < 0.01); "family distress" (p < 0.001); and worse outcomes for impact on "personal relationships" (p > .001). Interestingly, in spite of such reporting, Hispanics in the sample scored significantly higher for mood (p < 0.001) and general happiness (p < 0.02). Cleeland and colleagues (1994) reported similar findings. When people of color were compared to Caucasians, Rabow and Dibble (2005) found minority patients at the end of life suffered a greater burden of pain. Of 99 patients receiving palliative care in their longitudinal study, minorities, including Hispanics, consistently reported greater pain on average (p = .05) and current pain (p = .03). In addition, they consistently had lower opioid-based analgesic use. Two studies found the actual treatment setting to be an additional barrier. Both studies reported inadequate analgesic prescribing for Hispanics and African Americans receiving care at a center that predominately treated ethnic minorities when compared to similar groups receiving care in a nonminority center (Cleeland, Gonin, Baez, Loehrer, & Pandya, 1997; Cleeland, Gonin, Hatfield, Edmonson, Blum et al., 1994). A qualitative study by Im et al. (2007) using a feminist theoretical foundation described four major themes among Hispanic patients experiencing cancer-related pain as related to inadequate pain management. These were 1) lack of communication about being undertreated; 2) enduring of pain was tied to traditional gender roles which guided behavior; 3) personal needs were set aside on behalf of the greater needs of family over self; and 4) confliction in the experience, while interfacing with an unfair healthcare 51 system they simultaneously were appreciative of any treatment received. Similar findings were reported in a study using structured interviews with 31 socioeconomically disadvantaged African Americans and Hispanics. In addition to reporting difficulties related to communication, there was a reluctance to report pain, a belief in the value of stoicism and concerns related to addiction and tolerance (Anderson et al., 2002). Many of these studies point to the role of cultural beliefs and behaviors that may influence such differences in pain and its management. The following section reviews some of the literature addressing the important role of culture as it specifically applies to Hispanics and pain perception and experience. Culture, Meaning and Experience "Yet only through communication can human life hold meaning." Paulo Freire, 1970, p. 63 The gaps demonstrated here in pain care by ethnicity must be considered within the context of culture. As a reminder, culture is defined as an anthropological and social concept held by a particular group where values, beliefs, norms, patterns of behavior and ways of knowing are shared, learned and passed on. These cultural norms guide decision-making and actions in addressing human experiences (Bent, 2003; Leininger, 1985). Davidhizar and Giger (2004) as well as others found culture to be a strong influence on the experience, expression, and outcomes of cancer-related pain in Hispanics (Duggleby, 2003; Im et al. 2007; Im, Guevara, & Chee, 2007; Juarez, Ferrell, & Borneman, 1998; Juarez, Ferrell, & Borneman, 1999; Kandula, Lauderdale, & Baker, 52 2007). Understanding unique cultural norms is critical in cross-cultural research (Campbell et al., 2009; Im, Ho, Brown, & Chee, 2009). Several factors that can frame cultural influences as they may influence care have been described, including communication, space, social organization, time, environmental control, and biological variation (Giger & Davidhizar, 2004). Some of these considerations have been reviewed above as they may affect general health care outcomes. The notion of cultural normative influences can be further explored within the complex construct of pain and specifically CRP. Communities socialize individuals in their culture as to what is expected of them in given situations, what their roles are, and how to act/behave (Callister, 2003; Dayer- Berenson, 2011; Juarez, 1996). Pain can also be assigned a particular meaning or purpose, based on tradition or custom (Callister; Villarruel, & Ortiz de Montellano, 1992). Health care providers must assess and intervene with an awareness of the context, meaning, and cultural influence pain may have for the individual. Cancer-related pain brings along with it a central concern - the meaning and symbol of that pain. We assign meaning to most things in our lives. The experience of pain, when considered through the lens of what that pain means, certainly has the potential for emotional responses (Campbell et al., 2009). In an ethnographic study with Mexican-Americans experiencing a variety of pain types, Villarruel (1995) identified four themes related to pain meaning, its expression, and care of self and others. These themes are summarized as 1) pain as an all encompassing suffering; 2) the accepted obligation to bear pain; 3) to endure pain stoically, privately; and 4) the paramount virtue and centrality of caring for others. Pain 53 among these Mexican-American informants was not only physical, but also personal, interpersonal, social and spiritual. Personal aspects included physical and emotional manifestations such as loss of function, mobility, spirit or energy. The interpersonal domain included loss of or diminishing relations with loved ones as well as separation from these central relationships because of pain. Loss of cultural pride and dignity were important aspects of the social theme found among these informants. Finally, in the realm of spiritual, aspects, conflict and disharmony between God and the individual were described. These emerging themes resonated with her earlier ethno-historical research exploring culture and pain from a Mesoamerican view (Villarruel & Ortiz de Montellano, 1992). Stoicism, for example, was exalted; pain and suffering were considered human fate and a consequence of immoral behavior; and to endure pain was valued and admired. Understanding to what extent these epistemic forces remain in contemporary generations is the work of researchers and providers working with people of this ancestry. Campbell and colleagues (2009) addressed meaning of pain among Latinos and found ‘destino' /destiny, luck or chance as a reason for pain in one's life. Embedded in this perspective is a level of acceptance that may be mingled with fatalism although, as the authors admit, this has not been extensively researched in this population. Further compounding understanding is the nature of the pain as being affiliated with an underlying cancer and whatever other meanings may or may not be included. Juarez (1996) has summarized similar constructs and brought others to light. For example she notes the hot-cold system that is found among Mexican-Americans, Puerto Ricans and other Latinos, believed to contribute to illness or pain. Although it is not a 54 direct reflection on meaning, perceiving pain as hot or cold may influence receptivity to particular biomedical treatments or folk remedies. Nurse researchers and others have developed models for understanding the many domains of the pain experience. Presented in Chapter 1, Padilla and colleagues, for example, developed a framework for identifying and categorizing the many aspects to a pain experience (Padilla, Ferrell, Grant, & Rhiner, 1990). This model calls for the inclusion of understanding the pain from a cognitive perspective; what is it that the person thinks this pain means or represents? Bates suggested another model for understanding pain - a biocultural model (Bates, 1987; 1988). This model acknowledges and accounts for how expectations, attitudes, meaning, and emotional responses are constructed through observations within a cultural group. These influences are primarily developed through the immediate circle of one's community and family members (Figure 3). Bates' model suggests that physiologic, psychological/behavior responses, and sociocultural factors influence a pain experience and aid interpreting a relationship between pain and culture. It is important to note that a difference in neurophysiological systems by members of different ethnic groups is not assumed. Instead, the author assumes humans have similar biological reactions to pain. The sociocultural and environmental features are felt to hold a more varying and dynamic place in the model. It is important to note that economic or structural factors, centrally linked to the experience of pain, are not part of this model. Experimental Endeavors Targeting Disparate Cancer-related Pain Care Larkey and colleagues (2001) stress the importance of designing ‘interventions that fit the worldview of the targeted group and parallel their definitions of benefit, harm, resou defin begin pain a fewsp review comm misco rando script hypot Figu urces and pow nitions in the n by summar and cancer p pecific studi w. Kalauouk munication w ommunicatio omized contr ted physician thesized to i ure 3. Biocu wer" (p. 66) ir interventio rizing related pain specific es conducted kalni, Franks when using a on among pe rol trial inclu n-patient dis increase kno ultural Mode . Interesting on and have d interventio cally has been d with Hispa s, Oliver, Me psychoeduc ersons exper uded minorit scourse abou wledge of pa el of Pain Per gly, very few been ground onal research n addressed anics/Latino eyers, and Kr cational inte riencing CRP ties. Individ ut their perso ain self-man rception (Ba w studies inc ded on little h. Literature throughout s experienci Kravitz (2007 ervention to d P. This seco dualized edu onal pain con nagement, m ates, 1988) corporated em qualitative d looking at m this chapter ing CRP wil 7) focused on decrease pat ondary analy ucation and p ntrol issues w misconception 5 mic data. I will meaning of and the l close this n tient-clinicia ysis of a practice usin was ns, and 55 an ng 56 perception of control over pain. Consistent with the literature, the minorities had significantly greater pain at baseline (p = .05). Differences in pain intensity ratings were eliminated in the experimental group but unchanged in the control group. When appropriate and agreed upon by the participants, role-playing could be incorporated as one form of education with the intent of impacting a more collaborative encounter with healthcare providers. Kalauokalani and colleagues (2007) suggest that role-playing as a form of coaching and empowering communication may serve as a catalyst for more engaging provider involvement and responsiveness. The constructs of collaboration, communication, and empowerment all address some of the complexity and gaps in pain care that have been identified (Bates et al., 1993; Im et al. 2007; Im, Guevara, & Chee, 2007; Kandula, Lauderdale, & Baker, 2007; Larkey et al., 2001; Villarruel & Ortiz de Montellano, 1992). Partially reviewed earlier, Juarez and colleagues (1999) used a similar educational intervention with cancer patients receiving pain and symptom care in homecare or hospice agencies. Conducting a standardized educational program these researchers evaluated outcome variables measuring quality of life, knowledge and beliefs and pain measures before and after the teaching session in a sample of Hispanics, African- Americans and Whites. Not explicitly addressed in the report were ways the researchers tailored the teaching to be culturally relevant and sensitive, although the authors did discuss the imperative for such directions. The analysis from this interventional study examined only between group differences (summarized above) and did not look at in-group change. More recently, Devine (2003) conducted a meta-analysis of the effect of 57 psychoeducational interventions in adults with CRP. Unfortunately this review did not report ethnicity data and the methodology and reporting variation among the 25 studies selected must temper interpretation. The major findings from this study supported the use of relaxation-based cognitive behavioral interventions, education on analgesic use and supportive counseling to reduce CRP. These interventions may be conducive to a culturally tailored approach to meet the needs of diverse ethnic groups. Davidhizar and Giger (2004) similarly examined the most prominent and evidence-based culturally sensitive strategies for assessing CRP. Although pain is a universal experience, care must be tailored to the individual. Relevant key approaches are outlined here: 1. Culturally appropriate assessment tools. 2. Incorporate understanding of variations in affective responses (influenced by culture) into care. 3. Recognizing and respecting the role of language and misunderstanding, miscommunication and meaning that influences transmission of knowledge and experience. 4. Expression or acknowledgement of pain may not be culturally appropriate and tailoring care as needed. 5. Engage in personal reflection, identifying one's own values, beliefs, and possible biases that influence delivery of equitable and sensitive pain care. The literature has demonstrated that purely informational /educational approaches are limited in their usefulness in that they fail to incorporate individual beliefs and tend to be "decontextualized" (Mishra et al., 1998, p. 655). The examples provided here have 58 enlisted predictors of undertreatment such as miscommunication/language, knowledge deficits, and assessment strategies to address CRP disparities in Hispanics. These interventions have been largely based on the reported evidence and statistical configuring that attempt to unravel and describe undertreatment rather than from the voices of Hispanics experiencing pain. Qualitative Literature on Hispanic Latinos and Cancer Pain Two studies are reviewed here that direct their inquiry to those with such pain. In 1998 Juarez and colleagues used Bates Biocultural model (1985) and the Impact of Pain on the Dimensions of Quality of Life model (Padilla, Ferrell, Grant, & Rhiner, 1990), both reviewed earlier in this text, to frame their qualitative study. Open-ended questions followed responses to the Hispanic Pain Experience Questionnaire to elicit influences of culture on cancer pain management in Hispanics. Eight themes emerged related to culture, some with similar tenor to earlier findings: • Stoicism: Taught not to complain • Family Medicine Woman • Follow and Believe in God • Folk Healers • Beliefs about Medications • Family of Central Importance • Advice from Family/Neighbors • Advice from Pharmacist This study also captured unique aspects such as withdrawing in order to conceal the pain from loved ones. Pain descriptors were more emotive among this sample of 59 Hispanics with CRP, reinforcing the recommendation to acknowledge and integrate the variation of affective responses into pain care (Davidhizar & Giger, 2004). Managing pain reflected common strategies as well as folk remedies. Preparations such as traditional herbs and teas (cancerina with cat claw, arnica, cola de caballo/horse tail, lemon and orange leaves), assumption that injections of vitamins would benefit during illness, use of ointments (crema de abeja/bee cream), and combinations using rattle snake specifically to treat the underlying cancer, were also perceived as therapeutic. Although a structured tool guided the interviews, themes surfaced that provide a beginning understanding of some of the cultural variables surrounding a pain experience. Cohen and colleagues (2004) conducted a challenging study using a hermeneutic phenomenological design with open-ended questions designed to bring forth descriptions of symptoms participants were having related to cancer. This study was not exclusively designed for Hispanics but 2 of the 10 informants were Hispanic. The most provoking finding was the reminder that pain may be disguised as other symptoms. A willingness to openly discuss other symptoms may exist but pain, often linked to meaning of the underlying disease, is not always as easy for the individual to disclose or confront. Pain assessment must go beyond the use of objective measurable scales such as 0 to 10 ratings, expanding in ways that recognize the potential for underreporting, especially when pain is linked to death awareness. Summary and Rationale for Study Green et al. (2003) acknowledge the significant lack of knowledge and gap in the literature regarding the pain experience and treatment for ethnic minorities. They suggest future direction for research should include understanding patient level influences such as 60 cultural beliefs and decision-making influences. Villarruel and Ortiz de Montellano (1992) recognized many years ago the need to develop a clearer understanding of pain behaviors among Mexican-Americans in order for nurses to provide culturally competent, sensitive and specific pain care to this population. Unfortunately, from that time forward, the literature has scant evidence of exploring the CRP experience in Hispanics through qualitative means. As can be seen in this chapter, the majority of these scientific endeavors focused first on capturing the disparities, and secondly attempting to isolate risk factors for undertreatment through descriptive analysis. Some of the studies used experimental designs to modify differences in care however little literature exists from a qualitative perspective to first hear the voice of experience of CRP, including Hispanics. Although some of the groundwork has been laid in describing the meaning of pain in populations classified as Hispanic/Latino or Mexican-American (Cohen et al., 2004; Juarez et al., 1998; Villarruel & Ortiz de Montellano), none of these works have included a perspective on external factors that influence CRP order to characterize personal identity and meaning, provider, and healthcare system level factors from the perspective of those living with cancer-related pain. Further exploration of how Hispanic Latinos describe their experience of CRP will strengthen current knowledge and care for this population. Using an educational frame, Freire (1970) suggests a deep reciprocity must exist between teacher and student. He favors a more dialectical approach that honors and incorporates shared decision-making, inclusive of individual and social dimensions of a phenomenon as a means toward empowerment and change. Such a model has not been 61 used to understand and modify the experience of CRP and only in a limited fashion in cancer health promotion research (Mishra et al., 1998). Freire (1970) refers to ‘object' as the listener or the patient. The ‘subject' is narrating (teaching) to the object. "The teacher talks about reality as if it were motionless, static, compartmentalized, and predictable. Words are emptied of their concreteness and become a hollow, alienated and alienating verbosity" (Freire, p. 57). Should this same hermeneutic be applied to many of the research approaches in relation to CRP: negotiating experience rather than knowing it? The first steps are to create an opportunity to describe CRP from the perspective of Hispanic Latinos as subjects, rather than objects. Greater understanding of a culturally embedded experience and meaning may then raise consciousness and improve care. I have summarized the evidence on treatment for CRP, explored prevalence, and described possible reasons for its undertreatment, including patient, provider and system-level factors. A description of the general population has been provided, tailored to capture the specific characteristics and issues of Hispanics in New Mexico where data collection occurred. Finally I have summarized how cancer pain treatment and undertreatment have been analyzed in this population, mostly rooted in objectivist epistemology, with very few studies examining this concept from a qualitative descriptive perspective (Crotty, 1998; Sandelowski, 2000; 2002). Culturally tailored interventions need to be developed that are built from both qualitative and quantitative studies, addressing the unique values, beliefs, histories and behaviors of Hispanics (Mitrani, 2009, p. 3). The following chapter presents the research 62 methods, outlines the design and data collection process, and describes the methods used for data analysis and for interpretation of the findings. CHAPTER III METHODS After reiterating the study purpose and aims, this chapter outlines the rationale for the chosen research design, population and sampling methods, data gathering methods, analysis, synthesis, and ethical considerations. To review, the purpose of this descriptive qualitative study was to explore how Hispanics/Latinos living in New Mexico experience CRP in their daily lives and how these experiences are influenced by culture, local social/environmental, and healthcare structural and provider-level factors. Specific Aims and Research Questions Aim 1 Explore dimensions of the CRP experience as described by Hispanics/Latino participants. RQ1: What characterizes the experience of CRP among New Mexican Hispanics/Latinos? Aim 2 Describe participants' perspectives of how local, institutional, and provider-level factors influence the experience of CRP among Hispanics/Latinos. RQ2: What external factors influence the experience of living with CRP among New Mexican Hispanics/Latinos? Epistemology and Research Design Using research methods that are grounded in a constructionist epistemology allows discovery of new knowledge to emerge when little is known about a particular phenomenon (Morse, Swanson, & Kuzel, 2001). Such an approach creates opportunity for an expanded exploration of facets of a given phenomenon, such as CRP. As summarized in Chapter II, there is substantial evidence reporting the clear discrepancies in pain management received by various minority groups, described largely using empiric measures. Missing from the literature are studies offering emic insight into the actual experience of CRP for those having this type of pain or how these experiences might be partially shaped by cultural, local, and systems factors. Qualitative inquiry can expand our understanding of reported empirical data, adding a powerful richness to the scientific body of knowledge sufficient to change or modify perceptions and positions, influence practice, and ultimately improve care (Morse et al.). Qualitative Descriptive Inquiry The study at first glance may seem most suited for an ethnographic approach, as it focused on the experience of CRP among a specific ethnic group - Hispanic Latinos. Ethnography calls for a more immersed strategy within the population of interest. 64 65 Ethnographers must incorporate behavior, speech, and context into an understanding of meaning and, when possible, intentionally enter the situation to aid in data interpretation (Thomas, 1993). Conventional ethnography attempts to speak for another: describing an experience from another's cultural context. This study does reflect elements of culture, but as a primary methodology an ethnographic approach was not well suited. For example, immersing oneself within the cultural group of persons with CRP is not possible. Additionally, the population of Spanish-speaking persons with CRP was not a specific inclusion criterion, thus limiting the ability to incorporate language into the understanding of cancer pain. As the results report, there are dimensions of culture that are described. However, this is primarily a qualitative descriptive study. It might also seem fitting to use a phenomenological approach as one could argue that any group is a culture of its own; therefore, exploration of a lived experience might fall under the category of phenomenology - the notion that "phenomena-appear through consciousness" (Thompson, 1990, p. 232). Phenomenology as philosophy assumes that the ordinary everyday experience of a given situation is best described by those living it, privileging the individual (Morse et al., 2001; Schwandt, 2001; Thompson). Phenomenology certainly has a strong position in nursing research to the extent that it helps in understanding personal (emic) needs of those for whom we care, even as it excludes a discussion of outside (etic) influences or perspectives (Porter & Ryan, 1996; Schwandt). It is my assumption that confining the construct of CRP in a Hispanic/Latino population to only a personal level blocks from view other factors that contribute to the experience. As the inquirer it is important to listen for the nuances that represent such 66 influences. While both ethnography and phenomenology might be considered feasible methodologies, a more pragmatic method that is consistent with the previously described underpinnings is a qualitative descriptive method. Sandelowski (2000) makes a provocative claim that researchers need to free themselves from forcing a qualitative study to fit into a design that may be perceived as a more complex method of inquiry. She suggests qualitative descriptive studies should not be considered crude, low-rung examples of qualitative design, as this assumes there is a hierarchical structure to qualitative endeavors. In fact, it is not uncommon to overstate the designation of projects as ethnographic or phenomenological when they are primarily descriptive (Sandelowski). She makes a case that within a descriptive qualitative approach it may be appropriate and even welcome to borrow principles of these other methods, which I have done. A challenge is in defining what constitutes a qualitative descriptive study in light of the multitude of other methods available, yet she attempts to do exactly that. It is her framing of qualitative descriptive methods that have served to guide this study. There are two primary features of qualitative design that fit the current study. First, while there is, of course, an element of interpretation in qualitative design, the researcher does not "move far from or into their data" (Sandelowski, 2000, p. 335). All inquiry requires description and consequently requisite interpretation. In simply deciding what to describe lay the seeds of transformation. Sandelowski suggests that unlike other methodologies, qualitative descriptive interpretation resides close to the data, and analysis may be easily recognizable f