Health Disparity and Structural Violence

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According to the assigned article, “Health Disparity and Structural Violence: How Fear Undermines Health Among Immigrants at Risk for Diabetes,” narratives tell the story of the interconnectedness between fear and health. Thematically, the issue of fear is a dominant feature that affects how an individual approaches day-to-day living and health. Explain the relationship between fear and health identified by the researchers in the article. Do you agree that structural violence perpetuates health disparity?

30 Health Disparity and Structural Violence- Page-Reeves, et al.

Journal of Health Disparities Research and Practice, Volume 6, Issue 2, Summer 2013

Journal of Health Disparities Research and Practice

Volume 6, Issue 2, Summer 2013, pp. 30-48

© 2011 Center for Health Disparities Research School of Community Health Sciences University of Nevada, Las Vegas

Health Disparity and Structural Violence: How Fear Undermines

Health Among Immigrants at Risk for Diabetes

Janet Page-Reeves, University of New Mexico Joshua Niforatos, University of New Mexico Shiraz Mishra, University of New Mexico Lidia Regino, One Hope Centro de Vida Health Center Andrew Gingrich, University of New Mexico John Bulten, One Hope Centro de Vida Health Center


Diabetes is a national health problem, and the burden of the disease and its consequences particularly affect Hispanics. While social determinants of health models have improved our conceptualization of how certain contexts and environments influence an individual’s ability to make healthy choices, a structural violence framework transcends traditional uni- dimensional analysis. Thus, a structural violence approach is capable of revealing dynamics of social practices that operate across multiple dimensions of people’s lives in ways that may not immediately appear related to health. Working with a Hispanic immigrant community in Albuquerque, New Mexico, we demonstrate how structural forces simultaneously directly inhibit access to appropriate healthcare services and create fear among immigrants, acting to further undermine health and nurture disparity. Although fear is not normally directly associated with diabetes health outcomes, in the community where we conducted this study participant narratives discussed fear and health as interconnected.

Keywords: Structural Violence, Health Disparities, Diabetes, Immigrants

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Journal of Health Disparities Research and Practice, Volume 6, Issue 2, Summer 2013

“There is a powerful, enervating anxiety created by the limits of our control over our small worlds and even over our inner selves. This is the existential fear that wakes us at 3 a.m. with night sweats and a dreaded inner voice that has us gnawing our lip, because of the threats to what matters most to

us” (Kleinman 2006b, p. 6) “… it has long been clear that medical and public health interventions will fail if we are unable to understand the social determinants of disease” (Farmer, Nizeye, Stulac, and Keshavjee 2006, p. 1686)

INTRODUCTION Diabetes has become an epidemic problem in the U.S. (Boyle, Thompson, Gregg, Barker, and Williamson 2010; Centers for Disease Control and Prevention 2011). Approximately 8.3% of the population (or 25.8 million people) suffer from diabetes in the U.S., with the majority (nearly 95%) having type-2 diabetes (Centers for Disease Control and Prevention 2011). In addition, nearly one-fourth of the population has been diagnosed as pre-diabetic (Centers for Disease Control and Prevention 2008) and trends suggest that diabetes prevalence may increase to as many as 1-in-3 adults by 2050 (Boyle et al. 2010). These data demonstrate that diabetes is a compelling national problem, but the risk of diabetes is not uniform. There are significant disparities associated with diabetes based on race and ethnicity. Minority populations have a higher prevalence of diabetes as compared to non-Hispanic whites (Centers for Disease Control and Prevention 2011; Community Preventive Services Task Force 2011). Hispanics are 66% more likely, and Mexican Americans are 87% more likely to be diagnosed with diabetes (Centers for Disease Control and Prevention 2011). In Albuquerque, New Mexico, diabetes is the sixth leading cause of mortality (New Mexico Health Policy Comission 2009). In the Hispanic immigrant neighborhood where this study was conducted, our preliminary research found that the prevalence of diabetes and pre-diabetes among those sampled was 56%, with 29% of those undiagnosed and unaware of their compromised health status (Mishra et al. 2012). Although ethnicity is one risk factor (Hanis, Hewett-Emmett, Bertin, and Schull 1991; Samet, Coultas, Howard, Skipper, and Hanis 1988), research has demonstrated a broad range of factors influences diabetes risk. Moreover, the findings of an Institute of Medicine report, (2002) identify the complicity of “policies and practices of health care systems…[with]…racial bias, discrimination, stereotyping and clinical uncertainty” (Smedley 2012, p. 993) as core factors in the creation and maintenance of disease and disparity. The etiology of diabetes, then, involves the complex intersection of multiple risk factors, some of which are not traditionally the focus of public health research. This reality has implications for prevention and treatment. Since the cause of diabetes is multidimensional, preventing it or treating it from a purely biomedical perspective is rarely effective; but without a comprehension of the relationship between health and broader social forces that produce disparity, efforts to improve health are not likely to result in meaningful change. Despite research regarding broader factors involved in disease and disparity, the public health model for diabetes prevention and treatment has tended to continue to focus on getting individuals to change their behavior in terms of diet and levels of physical activity (Diabetes Prevention Program Research Group 2002) or to be “compliant” with prescribed actions and medications for diabetes maintenance (Bahati, Guy, and Gwadry-Sridhar 2012). Expanding the focus to include more expansive factors like historical and structural racism, changing relationships in the international economy that affect employment, housing policy that defines

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neighborhood residence, immigration policy, or government subsidies to industrial agriculture, is generally considered to be beyond the scope of study and therefore avoided in public health research. Increasingly though, because of the growing diabetes “epidemic” (Lam and LeRoith 2012) a social determinants of health perspective is seen as more adequate than a focus on individual behavior for addressing diabetes (Fisher, Chesla, Mullan, Skaff, and Kanter 2001; Peyrot, McMurry Jr, and Kruger 1999; Schulz, Zenk, Odoms-Young, Hollis-Neely, Nwankwo, Lockett, Ridella, and Kannan 2005). Groundbreaking research on social determinants of health (e.g., Kawachi and Bruce 2006; Marmot and Bell 2009; Syme and Frohlich 2002) and how “social factors ‘get into the body’ to cause disease (Syme 2005) helped to focus on disease mechanisms that had not previously been well understood or even imagined. For example, the impact of chronic stress (Cohen, Doyle, and Baum 2006; Kopp, Skrabski, Szé kely, Stauder, and Williams 2007) and the fact that individuals from low-income communities are exposed to higher levels of stress are now recognized as significant and cumulative influences on health and health disparities (Davey Smith 2003; Evans and Schamberg 2009; Raphael, Anstice, Raine, McGannon, Rizvi, and Yu 2003). The social determinants approach acknowledges that health behavior reflects more than individual desire or intention to change (Caban and Walker 2006; Cabassa, Hansen, Palinkas, and Ell 2008; Mendenhall, Seligman, Fernandez, and Jacobs 2010). The extent to which individual action is embedded in contexts external to individual authority and structured by institutionalized relations, environments, and policies is now well-documented in the social determinants literature (CSDH 2008). This has translated into a growing interest in environmental and policy change (e.g.,, & cfp.jsp?ID=20804) and the need to promote “community empowerment” (Brennan Ramirez, Baker, and Metzler 2008) to overcome social determinants as “upstream” strategies for improving diabetes health outcomes. However, understanding of the social dynamics involved in the mechanisms and pathways of chronic disease continues to lag (Potvin, Gendron, Bilodeau, and Chabot 2005; Trickett 2009). It has become clear that curtailing the alarming rise in diabetes will require a more nuanced understanding of the broader social determinants of health if evidence-guided strategies for individuals at high risk for developing the disease are to be effective. Yet, conceptual frameworks from public health theory, while enlightening in many respects, have not sufficiently embraced the true vision of social determinants thinking (Kawachi and Bruce 2006; Marmot and Bell 2009; Syme 2005; Syme and Frohlich 2002). Current approaches tend to be insufficient for revealing the multi-dimensionality of the relationship between social determinants, chronic disease and health disparity (Chaufan, Constantino, and Davis 2011; Coleman 2011, p. 13). The move toward a perspective on social determinants of health has necessitated a broader conceptualization of factors influencing health, but rarely does research seek to go beyond identifying immediate barriers and promoters of disease to explore or address the inequitable power dynamics and the root causes involved. Potvin and colleagues (2005) argue that public health operates from this incomplete knowledge base because there is an “acute need for theoretical innovation” (p. 591). Moira (2010) similarly suggests that because theory is not sufficiently incorporated into public health research, the focus fails to go beyond the specifics of what people say or do to developing a coherent interpretation exploring “the meanings and processes associated with the categories of behavior observed” (p. 287)—in other words, an interpretation of the data. As such, we have yet to develop a more complete and integrated understanding of the way that health and illness are “produced as a social phenomenon.” Like Potvin and colleagues (2005) and Moira (2010), we believe that public health frameworks tend to be under-theorized, and that by expanding our theoretical repertoire to

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include conceptual approaches from social theory, we can not only illuminate dynamics underpinning the production of health disparity that are poorly understood in the public health literature, but can offer new perspectives to expand our ability to prevent and reduce health disparity. Using data collected with a Hispanic, immigrant population in Albuquerque, New Mexico, we apply a structural violence framework (Bourgois 2002; Farmer, Nizeye, Stulac, and Keshavjee 2006; Galtung 1969; Scheper-Hughes 1992; Singer 2004) to develop the concepts presented in this article. When analyzing processes related to disease, a structural violence framework takes into consideration the extent to which people’s lives are embedded in, reflect, and are limited by institutionalized inequality. Social inequality, whether current or past, is produced by historical processes that create inequitable relationships, environments, and policies, influencing and often governing individual experience. The multi-dimensional nature of social inequality means that its influence in people’s lives is cross-cutting; institutionalized inequality affecting one realm of a person’s life (e.g., low educational attainment) spills over into other dimensions (e.g., health status) (Eide and Showalter 2011; Ross and Wu 1995). Although not commonly employed in public health, a theoretical framework based on structural violence offers a useful tool for analyzing this spill over. Using this approach can provide insights for understanding the landscape of diabetes disparities. Theory: A Structural Violence Framework Farmer (2005) attributes the term “structural violence” to the writings of Latin American Liberation theologians and Johan Galtung (1969; 1990). In the 1960’s and 70’s, liberation theology gained ascendency in Latin America as Catholic clergy working in impoverished communities throughout the Americas questioned traditional orthodoxy in terms of the role of the church. Liberation theologians espoused a moral imperative for the church to go beyond merely ministering to the needs of the poor to actively undermine and challenge social and economic inequality, and to promote social justice. Catholic bishops in Latin America convened in Medellín (1968) and in Puebla (1978) to “denounce the political and economic forces that immiserate so many Latin Americans” (Farmer 2005 p. 141). The resulting “Puebla document” identified structural forces that allow the “rich [to] get richer at the expense of the poor, who get even poorer” (ibid.) (Boff and Boff 1987; Farmer 2005) as the underlying root of social inequality. This is the primary tenet of a structural violence lens. Academic conceptualization of institutionalized inequality as “structural violence” was originally developed in Gultang’s (1969) seminal essay Violence, Peace, and Peace Research where he identified as violent, processes, actions or causes that result in certain individuals being unable to live according to their own innate skill and capacity– for their actual lifetime “realizations” to be “below their potential realizations” (Galtung 1969, p. 168). When power relations (e.g., class, gender, race), and social institutions (e.g., family, ethnicity, religion) systematically perpetrate and reproduce a lack of actualized potential for some individuals while expanding the actualized potential of others (often beyond that suggested by their own innate skill and capacity), the “violence” becomes ensconced in people’s everyday lives as disparity. Although disparity can take many forms, health disparities can be understood as one of the most concrete manifestations of inequity, often determining who will live and who will die—with the poor and immigrants suffering disproportionately. In this context, Farmer, et al. (2006) explain that these dynamics “are structural because they are embedded in the political and economic organization of our social world; they are violent because they cause injury to people (typically, not those responsible for perpetuating such inequalities)” (p. 1686). It is in this context that Farmer (2005), playing on the language of liberation theologians in their argument regarding the

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proper perspective and relationship of the clergy and the church to social injustice, suggests that diseases like diabetes have “a preferential option for the poor” (p. 140). When using a structural violence framework to consider public health contexts, biology and the environment are not treated as independent variables (Singer 2001). From this perspective, we can understand that individual health behavior is circumscribed by structured and institutionalized inequality that limits the ability of individuals to make choices. Limited options then directly affect health outcomes. Individual agency is limited by and contained within the options that are realistically available. In many cases, health-promoting choices are not an option, or they may not represent the most valuable strategy for an individual in the context of other limiting factors—regardless of whether other options are healthy or not. Maar, et al. (2011) used a structural violence approach focusing on the circumstances in which Aboriginal people live to understand barriers to diabetes maintenance and treatment. They suggest that “it is important to look beyond the surface and identify the root causes of non- adherence, to prevent the unjustifiable blaming of socio-politically disadvantaged and vulnerable patients for deteriorating their health” (p. 13). Their findings are “compelling” (p. 13). They show that barriers created by social and political marginalization

“put people with diabetes in harm’s way by interfering with evidence-based diabetes care, ultimately increasing the risk of rapid onset of complications…The determinants of poor diabetic management uncovered in this research are inseparable from the structural violence exhibited in colonial history resulting in persistent disempowerment, poverty, stress and marginalization of First Nations communities and their health.” (p. 13)

Using a structural violence framework to understand health disparities in Albuquerque, New Mexico, we explore how structural forces and institutionalized inequality similarly create the social, emotional, and physical condition that invite and sustain diabetes in a Hispanic immigrant community. METHODS Research for this article was conducted by investigators from the University of New Mexico (UNM) in collaboration with community partners at East Central Ministries (ECM), a faith-based and social justice-oriented nonprofit organization in Albuquerque that primarily serves Hispanic immigrants. The issue of diabetes was identified as a health priority by members of the community who requested assistance in understanding and addressing diabetes as a threat to the health of their families, and study design reflected a community-engaged approach. The analysis presented here uses data gathered through key community member interviews and focus groups, contextualized by geocoding and data mapping of secondary data sets. The larger study, discussed elsewhere (Mishra et al, 2012; Page-Reeves et al, n.d.) also included a survey and blood analysis based assessment of diabetic status with 100 people. Study Setting and Population The site for this research was the International District (ID) in southeast Albuquerque, home to a significant Hispanic immigrant population. Located a few miles from the University of New Mexico, the ID is the one of the most diverse neighborhoods in the state, has a large Hispanic population (Childress, 2009), and is the most densely populated sector of the city (U.S. Census Bureau, 2010). Although the cultural diversity of the neighborhood has recently been recognized by some as an asset, the ID is also an area of the city with a reputation for its high levels of poverty (U.S. Census Bureau, 2010), transience (U.S. Census Bureau, 2010), and low educational attainment (U.S. Census Bureau, 2010). In addition, residence in the ID is associated with high levels of diabetes-related hospitalizations and mortality, and childhood obesity. Our preliminary research with ECM in the neighborhood (Mishra et al, 2012) found that

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75% of individuals surveyed have a family member with diabetes and 56% of people tested for blood glucose levels were in the range for uncontrolled diabetes/pre-diabetes. Of those, 29% were not aware of their condition. ECM, our partner for the research, is a non-profit, faith-based community organization operating in the ID. ECM focuses on community, youth, and economic development in the neighborhood with an emphasis on the large Hispanic immigrant population. Besides developing a Community Food Co-op, which addresses some of the food-based needs of individuals in the ID, ECM opened One Hope Centro De Vida Health Center in September 2006 to address a community-identified need for better access to quality affordable healthcare. One Hope is a low/no-cost clinic providing access to affordable healthcare for people regardless of their health insurance status, and is operated and managed by the community. All of the doctors and medical staff are volunteers, and many are doctors or residents from the UNM School of Medicine. One Hope is more than just a clinic as it values the holistic health of the community in terms of mental, physical, spiritual, emotional, and social wellbeing. Diabetes care and prevention have been identified as strategic community priorities for 2012 and beyond. Data Collection & Analysis Working with the Office for Community Assessment, Planning and Evaluation at the New Mexico Department of Health, we conducted a secondary analysis of archived data sets including information obtained from the U.S. Census, the New Mexico Department of Health, Albuquerque Public Schools, the New Mexico Department of Transportation, Bernalillo County, the City of Albuquerque, and hospitalization and death records. We geocoded and mapped these data to create maps of the County in terms of multiple dimensions (e.g., demographics, school BMI, pedestrian accidents, violent crime, food outlets, diabetes-related death, health insurance coverage, graduation rates, etc.). We used these maps to contextualize our understanding of risk factors for diabetes and factors that would affect people’s food and physical activity behaviors (Mishra,et al, 2012). Data was also collected through interviews and focus groups. Approval was obtained from the UNM Human Research Protections Office prior to the conduct of the research and all participants provided signed informed consent. With the help of the Study Coordinator, who is the Director of One Hope and lives in the neighborhood, we identified and recruited six key community leaders in the ID to participate in interviews and eighteen people to participate in focus groups. Three focus groups were held in two sessions each. Interviews and focus groups were conducted at the One Hope facility. Participants received a $20 merchandise card to a local business for each interview or focus group session to remunerate them for their time. Interviews were conducted in English by an intern research assistant who took notes by hand. The interview sessions were also audio recorded. Focus groups were conducted in Spanish by the Study Coordinator with support from one of the researchers who also took notes on a laptop computer. Interviews and focus groups used questions from a semi-structured guide that was developed from a review of the literature pertaining to diabetes in Hispanic communities (e.g., Personal Diabetes Questionnaire; Stetson et al., 2011). Questions emphasized understanding people’s perceptions of the problem of diabetes, challenges to living a healthy lifestyle, and ideas for diabetes prevention. Questions were open-ended in order to allow participant input to define the direction of the questioning.

RESULTS In interviews and focus groups, participant narratives conceptualized barriers to diabetes prevention in much broader terms than merely thinking about diet and levels of physical activity. Our analysis of the data revealed opinions and experiences related to people’s ability to live a

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healthy lifestyle that would prevent diabetes in terms of six themes: (a) Money and cost; (b) Stress and fear; (c) Being physically active is challenging; (d) People eat unhealthy food; (e) Food as social practice; and, (f) People’s lack of information (Page-Reeves et al., n.d.). Using a structural violence framework, the issue of fear stood out as an important cross-cutting factor that affects how an individual approaches day-to-day living. In interviews with the key community members, as well as in focus group sessions, we identified three main dimensions of fear in participant discussion of diabetes and health: (a) Cost; (b) Language, Discrimination and Immigration Status; and (c) Cultural Disconnect. Here we use these dimensions to further conceptualize and explore the theme of fear in relation to diabetes and health disparities.

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