A Qualitative Exploration of How Inner-City African American Adults with Type 2 Diabetes Navigate Social Environmental Barriers to Health Self-Management

“IN SPITE OF THE SYSTEM”: A QUALITATIVE EXPLORATION OF HOW INNER-CITY AFRICAN AMERICAN ADULTS WITH TYPE 2 DIABETES NAVIGATE SOCIAL ENVIRONMENTAL BARRIERS TO HEALTH SELF-MANAGEMENT

PAULETTE ANN SAGE

Submitted in partial fulfillment of the requirements for the degree of

Doctor of Philosophy

Dissertation Advisor: Brian Gran, PhD

Department of Sociology

CASE WESTERN RESERVE UNIVERSITY

January, 2017

CASE WESTERN RESERVE UNIVERSITY

SCHOOL OF GRADUATE STUDIES

We hereby approve the dissertation of

Paulette Ann Sage

candidate for the Doctor of Philosophy degree.

Brian Gran, PhD

Chair of Committee

Gary Deimling, PhD

Shari Bolen, MD, MPH

Kurt Stange, MD, PhD

September 12, 2016

*We also certify that written approval has been obtained for any proprietary material contained therein.

ACKNOWLEDGEMENTS

I can no other answer make but thanks, and thanks,

and ever thanks.

William Shakespeare

TABLE OF CONTENTS Page

LIST OF TABLES ...... 7

LIST OF FIGURES ...... 9

ABSTRACT ...... 10

CHAPTER ONE: INTRODUCTION ...... 12

Background and Statement of the Problem ...... 12

Type 2 Diabetes and Overall Health Status ...... 26

Purpose of the Study and Research Questions ...... 28

Sociological Significance and Contribution ...... 30

CHAPTER TWO: THEORETICAL FRAMEWORK ...... 34

Introduction ...... 34

Early Theorists and Conceptualizations of Structure and Agency ...... 35

Cockerham’s (2005) Health Lifestyle Model, a Nexus of Structure, Agency, and Health ...... 38

Theories and Models of Social Determinants of Health ...... 43

Brief Review of History of Social Determinants of Health (SDOH)/Social Ecological Model ...... 45

Ecological Models of Health and Health Promotion ...... 54

Ecological/SDOH Models Informing Analysis and Coding Structure ...... 55

CHAPTER THREE: METHODOLOGY ...... 63

Introduction and Background ...... 63

Theoretical Framework ...... 65

Qualitative Research Approach ...... 66

Strategy of Inquiry ...... 67

Study Population ...... 75

Data Collection and Procedures ...... 80

Data Analysis ...... 83

Role of Researcher ...... 91

Study Quality ...... 95

Ethical Considerations ...... 100

Study Limitations/Sample Size Considerations ...... 100

CHAPTER FOUR: Themes Derived from the Literature Review ...... 104

Introduction ...... 104

Process, Search Strategies ...... 109

Results ...... 111

Terminology ...... 111

Constructs, Definitions, Glossary ...... 113

Health Disparities Among African Americans ...... 115

Growth and Multidisciplinary Nature of the Study of SDOH ...... 118

SDOH Variables (Barriers and/or Facilitators) Implicated in the Etiology and Treatment of Diabetes and Health in General ...... 120

CHAPTER FIVE: STUDY RESULTS ...... 172

Introduction ...... 172

Social Determinants of Diabetes and General Health Management ...... 179 Economic factors as social determinants of health ...... 179 Public policy-related issues as social determinants of health ...... 185

Work, occupation, career, school as social determinants of health ...... 194 Family as social determinant of health ...... 200 Physical environment as social determinant of health ...... 216

Self-Management Barriers: Diet, Exercise, Medication Adherence, and Blood Sugar Monitoring ...... 219 Barriers to healthy eating ...... 220 Barriers to exercising ...... 223 Barriers to medication adherence ...... 224 Barriers to blood glucose monitoring ...... 231

Self-Management Strategies: Diet, Exercise, Medication Adherence, and Blood Sugar Monitoring ...... 234 Strategies for diet control ...... 234 Strategies for exercise management ...... 237 Strategies for managing blood glucose monitoring ...... 240 Strategies for medication management ...... 243

Other Barriers to Health and Diabetes Self-Management ...... 246 Chronic and acute comorbidities ...... 246 Psychological and other barriers ...... 252

Strategies for Diabetes Self-Management - “not elsewhere classified” ...... 257 Listening to, knowing my body ...... 259 “Experimenting,” learning by trial and error ...... 260 Seeking information, becoming informed ...... 262 The influence of popular culture ...... 262

Motivators/Facilitators of diabetes Self-Management ...... 270 The physician ...... 271 Physician’s use of Electronic Medical Records system ...... 277 Diabetes diagnosis ipso facto as motivator and facilitator ...... 285 Information, knowledge ...... 291 The Clinic ...... 295 Other motivating and/or facilitating health self-management factors ...... 305

CHAPTER SIX. CONCLUSIONS, DISCUSSION, IMPLICATIONS ...... 316

APPENDIX ...... 360

REFERENCES ...... 373

LIST OF TABLES Page

Table 1. Ecological model of health behavior ...... 57

Table 2. Characteristics of constructivist vis à vis objectivist grounded theory ...... 74

Table 3. Characteristics of sample ...... 78

Table 4. Practice site (Clinic) type 2 diabetes patient characteristics ...... 79

Table 5. Initial process coding example ...... 88

Table 6. Sample/illustrative list of psychological, social, and physical environmental factors implicated in health and diabetes management ...... 127

Table 7. Macrosocial determinants of population health ...... 129

Table 8. Social determinants of health/diabetes: Barriers and/or faciliators to self-management (general population samples) ...... 131

Table 9. Social determinants of health/diabetes: Barriers and/or faciliators to self-management (African American samples or subsamples) ...... 141

Table 10. Verbatim excerpt, public policy, health funding assistance barriers ...... 191

Table 11. Verbatim excerpt, family and diet ...... 211

Table 12. Illustrations of barriers or challenges to medication adherence ...... 225

Table 13. Verbatim excerpt, prominence and complexity of medication discussion during office visit ...... 229

Table 14. Verbatim excerpt, doctor/patient discussion of lapse in blood sugar monitoring ...... 233

Table 15. Illustration of diet strategies used to control diabetes ...... 235

Table 16. Verbatim excerpt, management of high and low sugar levels ...... 242

Table 17. Illustration of medication strategies used to control diabetes ...... 245

Table 18. Illustration of health self-management strategies ...... 265

Table 19. Verbatim excerpt, culture and diet, fast food ...... 269

Table 20. Verbatim excerpt, attitudes toward physician ...... 283

LIST OF FIGURES

Page

Figure 1. Cockerham’s Health Lifestyle Model ...... 38

Figure 2. Estimates of the impact of the broader determinants of health on population health ...... 48

Figure 3. Ecological model of four domains of active living ...... 54

Figure 4. Bronfenbrenner’s Model of Human Development ...... 56

Figure 5. Socioeconomic position and health among persons with diabetes, a conceptual framework (Brown et al., 2004) ...... 60

Figure 6. Socioeconomic and psychological social determinants of health in patients with diabetes (Walker et al., 2014) ...... 60

Figure 7. A conceptual framework for action on the social determinants of health (WHO, Solar & Irwin, 2010) ...... 61

Figure 8. Multi-grounded theory as a dialectical synthesis between inductivism and deductivism ...... 62

Figure 9. Characteristics of focused ethnographies ...... 72

Figure 10. Codes-to-theory model for qualitative inquiry ...... 86

“In Spite of the System”: A Qualitative Exploration of How Inner-City African American Adults with Type 2 Diabetes Navigate Social Environmental Barriers to Health Self-Management

Abstract

PAULETTE ANN SAGE

Purpose. This study was conducted to explore the barriers socioeconomically disadvantaged African American adults encounter in managing type 2 diabetes and the specific day-to-day strategies they employ to surmount them.

Theoretical Framework. Four perspectives informed all aspects of this study, from crafting the research questions through interpretation of results: The agency vis-à-vis structure tension; Marxist/Conflict Theory; Constructivist Grounded Theory as explicated by Charmaz (2006), and several Social Ecological health models.

Methods. Analysis was based on direct observation of 15 doctor/patient office visits and subsequent personal interviews. The patients were scheduled for routine follow-up visits and were selected from the panels of four physicians practicing at an exemplar

(relatively high diabetes quality of care scores), safety-net clinic (>50% of patients on

Medicaid or uninsured) in Northeast Ohio.

Results. The most salient barriers patients faced in managing diabetes were economic, job, and insurance-related in nature; and these obstacles influenced all their health care decisions and behaviors. Other barriers included: managing comorbidities, food insecurity, scarcity of affordable exercise options, neighborhood crime, transportation

issues. Management strategies included: conferring regularly with their physicians;

seeking the support of family, friends, and religion; going to a safety-net clinic; “listening

to my body”; using trial and error to make self-management decisions; becoming

informed; using available community resources; setting goals; and routinizing a diabetes

regimen.

Conclusion. Socioeconomically disadvantaged African American adults can successfully

manage diabetes given the requisite resources: culturally competent, caring physicians

and staff; the services of a safety-net healthcare system; public financial aid;

information and education; and family and community support.

Implications. This study is an exemplar for health stakeholders who seek to foster productive doctor/patient relationships and to improve diabetes outcomes of socioeconomically disadvantaged populations. Study findings suggest several policy implications: increasing the time for routine visits with complex patients; incentivizing caring and meaningful doctor/patient relationships over quantitative “throughput” measures; incentivizing integrative whole person care; systematically assessing patients’ social environmental concerns; and offering medical students mentored experiences in international health to foster altruistic caring (Bolen, Sage, Perzynski, & Stange, 2015;

Ferrer & Carrasco, 2010; Epstein et al, 2010; Berenson & Rich, 2010; Hong et al., 2010).

Chapter One: Introduction

Background and Statement of the Problem

This dissertation addresses two research questions: What social environmental barriers do African American adults encounter in self-managing diabetes and what work arounds and strategies do they employ to surmount them. This goal is accomplished using a qualitative research design involving observations of office visits and personal interviews with 15 patients and 4 physicians. The analysis is informed by Marxist - Conflict theory, consideration of the agency vis-à-vis structure tension, and several social environmental health models. Findings are significant because they demonstrate how an historically disadvantaged population can successfully self-manage type 2 diabetes in the face of intractable social environmental barriers given requisite resources.

Type 2 diabetes in the United States is widespread, presents potentially

devastating complications and comorbidities, and is costly personally in both a quality- of-life and financial sense to patients (Centers for Disease Control and Prevention [CDC],

National Diabetes Statistics Report, 2014; Dall et al., 2014; Ceretta et al., 2012;

Himmelstein, Thorne, & Woolhandler, 2009). A growing body of evidence implicates social and physical environmental as well as biological factors in both the etiology of the disease and the ability of physicians and patients to successfully manage it (R. J. Walker,

Gebregziabher, Martin-Harris, & Egede, 2015; R. J. Walker, Smalls, Campbell, Strom

Williams, & Egede, 2014a; R. J. Walker, Gebregziabher, Martin-Harris, & Egede, 2014b;

Clark & Utz, 2014; Hill, Nielsen, & Fox, 2013). In spite of the mounting evidence that social determinants of health (SDOH) are at play, however, the responsibility for both the onset and management of diabetes has historically been placed squarely on the individual and the lifestyle choices s/he makes (Clark & Utz, 2014; Cockerham, 2013;

Gomersall, Madill, & Summers, 2011).

The nexus between social determinants of health and individual behavior in the

self-management of diabetes offers an opportunity to explore a long-standing, central tension in sociology, that of agency vis-à-vis structure (Cockerham, 2005). This dissertation discusses how individuals self-manage diabetes (agency) in the context of social and physical environmental factors (structure) that often negatively affect their ability to do so successfully.

The Centers for Disease Control and Prevention (CDC) distinguishes three types of diabetes, all of which comprise a group of metabolic diseases characterized by the defective secretion and/or action of insulin. Clinicians use any of four blood tests to diagnose diabetes: an A1C (hemoglobin A1C) test, a fasting plasma glucose (FPG) test, an oral glucose tolerance test (OGTT), or a random (casual) plasma glucose test.

Clinicians diagnose “prediabetes” when an individual’s A1c (blood glucose measurement) is between >5.7 and < 6.4 (S. Bolen, personal communication, February 21, 2016).

People with this condition have an increased risk of developing diabetes (American

Diabetes Association, 2014).

In Type 1, previously known as “juvenile diabetes” because it is most often diagnosed in children, adolescents, or young adults, the body produces no insulin and accounts for 5% of total cases of diabetes. Individuals with type 1 diabetes need insulin through either injection or pump to survive. In type 2 diabetes (“adult-onset,” accounting for 90% to 95% of all cases), fat, liver, and muscle cells fail to respond correctly to insulin, and treatment typically involves health behavior modification (e.g.

diet and exercise) and/or oral medication. A third form, gestational diabetes, occurs in

2% to 10% of pregnancies (Basics About Diabetes, CDC, 2015).

Although there are three types of diabetes, this dissertation is concerned with

type 2 specifically not only because it is the most prevalent but also because it has been

predicted that 40% of American adults will develop it at some point in their lifetime

(Gregg et al., 2014). Additionally, 15 to 30% of people with prediabetes will be

diagnosed with fully developed type 2 diabetes within five years (Snapshot of Diabetes in America, American Diabetes Association, 2015). Hereafter in this report, “diabetes” will be used to refer to, specifically, “type 2 diabetes.”

According to the National Diabetes Statistics Report (CDC, 2014), 29.1 million people or 9.3% of the total United States (US) population has diabetes. Moreover, between 2009 and 2012, 37% of U.S. adults aged 20 years or older had prediabetes and that rate increased to 51% of those aged 65 or older. The seventh leading cause of death in the U.S., diabetes is associated with myriad complications and co-morbid conditions such as heart disease, stroke, blindness, kidney failure, and amputation

(National Diabetes Statistics Report, CDC, 2014). Compared with a person of similar age without diabetes, an individual with the disease has a shorter life expectancy and has about twice the risk of dying on any given day (National diabetes fact sheet, CDC, 2011).

Diabetes statistics become even more dire for nonwhite, poor, under-educated

Americans. At present the rates of diagnosed diabetes by race/ethnic background are:

7.6% non-Hispanic Whites (Whites), 9% of Asian Americans, 12.8% Hispanics, 13.2% non-Hispanic Blacks (African Americans), and 15.9% of American Indian/Alaskan Natives

(National Diabetes Statistics Report, CDC, 2014). Compared with non-Hispanic White

adults, the risk of diagnosed diabetes is 77 percent higher among non-Hispanic African

Americans, 66 percent higher among Hispanics/Latino Americans, and18 percent higher

among Asian Americans (Chow, Foster, Gonzalez, & McIver, 2012). Analyzing data from

the 1980 to 2012 National Health Interview Survey (NHIS), Geiss et al. (2014) found that the incidence of diabetes increased at a greater rate among Blacks and Hispanics than

among non-Hispanic White adults.

In an analysis of 6,177 adults aged 25 and older with diabetes who participated in the National Health Interview Surveys (1997-2003), Saydah, Imperatore, and Beckles

(2013) concluded (after adjusting for several factors such as demographics, treatment, health care access and utilization, comorbidities, et al.) that lower levels of both wealth

and education increased the risk of mortality for people with diabetes (PWD).

Disparities exist as well in receipt of annual diabetes services. The National

Healthcare Disparities Report 2013 uses a composite measure to track the national rate

of receipt of four recommended annual diabetes interventions: two HbA1c tests, a foot

examination, a dilated eye examination, and a flu shot. They noted several differences in

the receipt of these recommended services on the basis of race and income: In 2010

26% of Whites received the four recommended services vs. 21% of Hispanics and 20% of

Blacks. Similarly, high income individuals (29%) were more likely to receive services than

the poor (21%), low income (23%), and middle income (23%).

An earlier report (National Health Disparities Report 2010) found that highly educated individuals (44% of adults with diabetes and some college) were more likely to

receive recommended services than were those with less than a high school education

(38%) and those who graduated from high school (39%) and that privately insured

adults with diabetes (42%) were more likely to receive services than the uninsured

(30%). A 2013 CDC report notes that diabetes prevalence is highest among males,

people 65 or older, Blacks, Hispanics, people with less than a high school education, those who are poor, and those with a disability (see also Geiss et al., 2014).

While some factors implicated in the etiology of diabetes have been identified as

nonmodifiable – such as age, ethnicity, and genetics – it is generally believed that other causes originate with the patient’s behaviors and lifestyle (American Diabetes

Association, 2014; Nyenwe, Jerkins, Umpierrez, & Kitabchi, 2011). Consequently, the dominant medical paradigm for diabetes control has been and remains patient self- management. Patients are expected to adhere to strict medication, exercise, and diet regimens (Cockerham, 2007). While the control of blood glucose levels remains a diabetes treatment goal, more recent research suggests that additional interventions focused on cardiovascular risk reduction (e.g., smoking cessation, blood pressure control, reduction of lipid levels, and use of baby aspirin) are effective in extending the life span of people with diabetes (Erlich, Slawson, & Shaughnessy, 2014).

Management of diabetes generally involves extensive patient education, goal setting, regular monitoring for complications, laboratory assessment, self-monitoring of blood glucose, drug therapy, and interventions designed to modify behavior and lifestyle with regard to diet, exercise, weight control, and cessation of smoking (Khardori

& Griffing, 2015; Redmon et al., 2014; Nyenwe et al., 2011). When attempts at behavior

modification prove insufficient, there are myriad medication options. The use of drug- based and behavioral modification therapies used in combination has become increasingly common since they have been found to result in greater benefits compared to monotherapy, the “treatment of a disease with a single drug” (Bunn III, 2009; Oxford

English Dictionary Online). According to the 2014 National Diabetes Statistics Report,

57% of adults with diabetes in the United States were taking oral medication only, 15% were using both insulin and oral medication, 14% were using insulin only, and 14% were using neither insulin nor oral medication.

The “costs” of diabetes, at least from a popular/lay press standpoint, appear to be discussed mainly in the form of economic cost; and most of those discussions relate to the financial cost to the nation, to “society,” and to employers (“loss of productivity”) rather than to the burden of the disease on the patients themselves. The economic costs of diabetes in the U. S. increased 41% from $174 billion in 2007 to $245 billion in

2012. The cost burden of diabetes is estimated to be as much as $512 billion by 2021. Of the total in 2012, $176 billion was for medical care (e.g., doctor visits, medications, emergency care, hospitalizations), and $69 billion was attributable to absenteeism, reduced productivity, inability to work, and early mortality (Endocrine Facts and Figures:

Diabetes, The Endocrine Society, 2015; National Diabetes Statistics Report, 2014; The

Cost of Diabetes, American Diabetes Association, 2013).

Not only are medical costs for people with diabetes 2.3 time higher than for those without the disease, but also the per capita hospital inpatient costs for non-

Hispanic Blacks are 41% higher than they are for non-Hispanic Whites due to increased

17 inpatient hospitalizations by non-Hispanic Blacks. Non-Hispanic Blacks also have 75% more emergency department visits than the diabetes population as a whole. Moreover, people with diabetes who do not have insurance have 79% fewer doctor office visits and are prescribed 68% fewer medications than people with insurance (The Cost of

Diabetes, American Diabetes Association, 2013). The authors acknowledge that their report omits considerations of patients’ social, economic, and psychological well-being including “pain and suffering,” the care provided by nonpaid caregivers, and other personal burdens associated with the disease.

A 2007 national study (Himmelstein, et al.) found that 62% of all bankruptcies have a medical cause, and the share of bankruptcies attributable to medical problems rose by 50% between 2001 and 2007. Diabetes ranked second (after multiple sclerosis) in highest out-of-pocket expenditures. Over three-fourths of those filing bankruptcy attributable to illness had medical insurance at the start of their illness, including 60% who had private coverage, not Medicare or Medicaid (Arnst, 2009).

Arguably more relevant to the individual diagnosed with diabetes - in addition to the personal financial cost and the increased incidence of comorbidities and complications (as noted above) - the literature increasingly demonstrates the negative effects of diabetes specifically on patients’ quality of life (Rubin, Peyrot, & Siminerio,

2006; Ceretta et al., 2012; Grandy, Chapman, & Fox, 2008; Peyrot & Rubin, 2007).

Individuals with diabetes or cardiovascular conditions are more likely to report poor health-related-quality-of-life than are individuals with other chronic conditions (Chen,

Baumgartner, & Rice, 2007), and people with diabetes are twice as likely as those who

18 do not have the disease to be diagnosed with depression (Anderson, Freedland, Clouse,

& Lustman, 2001).

Using data from the 2011 DAWN2 study (Diabetes Attitudes, Wishes and Needs second study [DAWN2]), an international research initiative exploring the psychosocial aspects of living with diabetes, Nicolucci et al. (2013) reported that almost half (45%) the people with diabetes expressed an elevated level of diabetes-related emotional distress. People with diabetes also reported that the disease had a negative impact on other relationships and activities: family, friends, and peers (21%), leisure activities

(38%), work/studies (35%), and financial situation (44%) (Nicolucci et al., 2013).

Massive societal as well as personal efforts have been and continue to be extended to prevent and manage diabetes. As noted earlier, the societal economic consequences of the disease were $274 billion in 2012. Individuals with diabetes have the second highest medical costs among chronic diseases ($13,700). Almost a fifth (18%) of these expenditures are for prescription medications (ADA, 2013). People in the

United States with diabetes account for 23% of all home health visits, 22% of all medication prescriptions, 17% of physician office visits, 15% of hospital outpatient visits, and 12% of emergency department visits (American Diabetes Association, 2013).

There are hundreds, if not thousands, of public and private agencies and initiatives dedicated to prevention and/or management of diabetes. At the international level, the Diabetes Attitudes, Wishes, and Needs (DAWN) program seeks to improve diabetes care and outcomes worldwide by focusing on the psychosocial and behavioral barriers patients face in managing the disease. Although effective treatment is available,

more than half the world’s population with diabetes “do not achieve good health and

quality of life” (Skovlund, 2004, pg. 4; Skovlund & Peyrot, 2005). DAWN activities began

in 2001 with a survey of over 5,000 individuals and almost 4,000 diabetes care

providers. In another study building on the experiences of the first, DAWN2 was launched in 2011 and surveyed more than 15,000 people, including those living with the disease, those caring for individuals with diabetes, and health care professionals across

17 countries and 4 continents. Stakeholders in the project see it as a long-term commitment and an on-going project to help people manage their disease and improve their quality of life (About DAWN2, 2016).

Numerous other private and public organizations fund efforts to prevent diabetes and to help people manage the disease and improve outcomes. The CDC alone lists seven programs and initiatives including, for example, the National Diabetes

Prevention Program, The Chronic Kidney Disease Initiative, and the Native Diabetes

Wellness Program (CDC, Diabetes Programs and Initiatives, 2016). The American

Diabetes Association (ADA), similarly, sponsors several programs and initiatives seeking to prevent and improve disease outcomes. Providing support for both clinicians and patients, the ADA funds research, delivers services, advocates for health equity, and is a source of information for all stakeholders (ADA, About Us, 2016).

In a final example of the resources dedicated to preventing and managing diabetes, individual self-management interventions abound. Bolen et al. (2014) completed a systematic review, meta-analysis, and meta-regression of 138 randomized trials exploring the effectiveness and safety of “patient activation interventions” for

adults with type 2 diabetes (p. 1166). Their search began with 16,290 citations before

application of several exclusion criteria. Similarly, Shojania et al. (2006) assessed the

impact on glycemic control of 11 individual behavioral strategies included across 66

trials.

Despite the Herculean efforts and resources mounted to control and manage

diabetes, patients and their physicians to a large extent fail to control the condition

adequately (Nam, Chesla, Stotts, Kroon, & Janson, 2011; Spann et al., 2006; DiMatteo,

2004; Rayman & Ellison, 2000). Data from a 2014 Agency for Healthcare Research and

Quality report demonstrate that between 2007 and 2010, of adults age 40 and over with diabetes, 48% had greater than optimal hemoglobin A1c (7%), 33% had greater than optimal total cholesterol (less than 200 mg/dL), and 35% had greater than optimal blood pressure (140/80 mm Hg). Of the 27% of persons with diabetes who use insulin therapy, less than one half achieve the recommended A1C level of 7 percent or less (Mayfield &

White, 2004). It has also been estimated that 20% to 50% of patients with chronic disease do not take their medications as prescribed (Cramer et al., 2008). According to the DAWN2 study, healthcare professionals in the U.S. report that from ~44% to ~63% of their patients require significant improvement in taking responsibility for managing their diabetes (Holt et al., 2013).

Primary care physicians (PCP), including general practitioners, family doctors, and internists, provide approximately 90% of diabetes care in the United States

(Davidson, 2010). Playing a unique role in caring for complex patients with multimorbidities, these physicians also serve as a “hub” in coordinating care among

several specialists (Loeb, Binswanger, Candrian, & Bayliss, 2015). “Other chronic conditions are common among people with diabetes and account for much of the morbidity these patients face,” note Piette and Kerr (2006, p. 725). Most diabetes patients have at least one additional comorbid disease and as many as 40% have at least three (Piette & Kerr, 2006).

During a routine office visit PCPs address myriad issues involving whole person care, including a physical examination, systems check, care coordination, medication management, health screenings, review of behaviors (diet, exercise, et al.), patient’s acute concerns, health screenings, and other prevention and education issues.

Healthcare professionals themselves (nurses, dietitians, general practitioners) view diabetes as harder to treat than other chronic conditions (Clark, 2005). Despite the complexity of managing diabetes along with other comorbidities, patients and doctors are allocated only 15 to 20 minutes to address a patient’s total array of health and well- being issues (Rabin, 2014; S. Bolen, personal communication, February 21, 2016).

Additionally, it is becoming more difficult to treat diabetes because of the multiplicity of medications available. Treating diabetes is complex and time consuming especially when physicians are starting patients on new medications and fine-tuning doses. According to Mayer Davidson, M.D. the Diabetes Program Director at Martin

Luther King, Jr. Care Center: “There are now 12 classes of drugs that can be used to treat diabetes … since there’s no one way to treat it and a lot of choices, it can be very confusing” (Sakimura, 2014, par. 2).

Considering the centrality of their work in treating complex patients, the

predictions of a shortage of 12,500 to 31,100 PCPs by 2025 are startling (American

Academy of Family Physicians, 2015). Additionally, there is presently a 12 to 15 percent

shortage of the endocrinologists needed to manage patients with more advanced cases

of diabetes (Sakimura, 2014).

The “successful management” numbers remain unimpressive when considering diabetes care process measures as well. According to the 2013 National Healthcare

Quality and Disparities Report, among adults 40 and over with diabetes, only about one

fourth reported having received all four recommended services “in the past year” (two

hemoglobin a1C tests, foot exam, dilated eye exam, and flu shot). In a systematic

review and meta-analysis of diabetes care management trials, Egginton et al. (2012) concluded that most care management programs for diabetes “are carved out” (that is, not integrated with the totality of the patient’s care), “accomplish limited effects on metabolic outcomes,” and “have unknown effects on important patient outcomes” (p.

1).

Although based on international data, Skovlund and Peyrot (2005) reported that adherence to various diabetes treatments recommendations (diet, exercise, medication, glucose testing, keeping appointments, etc.) was low: Only 16% of those with diabetes reported that they completely complied with all aspects of their doctors’ recommendations. Only 3% of the 4,000 diabetes care providers in the study worldwide estimated that their type 2 patients completely follow their recommendations (Funnel,

2006; Skovlund & Peyrot, 2005).

In attempting to understand why adults with diabetes and their physicians fall

short in reaching treatment goals - notwithstanding the resources dedicated to

prevention and control of diabetes - one might ask if control may be poor, not because

of a particular individual’s failure to “behave” as recommended, but because of the

social structural factors at play in her/his life, factors over which the individual may have

little, if any, control. As noted above, diabetes treatment historically has focused on a

biophysical and individualistic model; that is, the patient is expected to take her/his

medications and adhere to dietary, exercise, and lifestyle behaviors prescribed by the

physician.

More recently, however, there is growing recognition that the individualistic

model fails to address the considerable influence that structure (i.e., social and physical

environment) plays in an individual agent’s (the diabetes patient) ability and motivation

to effect the prescribed behavior and lifestyle changes necessary to self-manage

diabetes successfully (Clark & Utz, 2014; Hill, Nielsen & Fox, 2013; Gomersall, Madill, &

Summers 2011; Glasgow, Peeples, & Skovlund, 2008; Peyrot, Rubin, & Siminerio, 2006;

Glasgow, Toobert, & Gillette 2001; Rayman & Ellison, 2000; Grzywacz & Fuqua, 2000).

Cockerham (2013, 2005), who has explored the interplay of lifestyle, agency, and

structure in depth (the influence of the physical and social environment on an individual’s capacity to “choose” a particular lifestyle) notes that whereas several studies “show that structural influences have a significant effect on health lifestyles,” there are also cases where “structure can be so overwhelming that agency is literally rendered inert” (2013, p. 130).

Self-managing diabetes is complex and demanding (Audulv, Asplund, &

Norbergh, 2012; Chlebowy, Hood, & LaJoie, 2010). The individual must orchestrate the conduct of her/his everyday life to accommodate a prescribed diabetes control regimen that includes blood glucose monitoring, adhering to medication schedules, paying attention to dietary restrictions, and incorporating exercise into busy, often deprived, lives as previously reported statistics demonstrate. As discussed earlier, low income has been shown to be associated with a higher prevalence of diabetes. Both economic constraints as well as ethnic and cultural factors shape food and exercise options that are available to adults with diabetes (Orzech et al., 2012). In general, regardless and in spite of socioeconomic status, diabetes patients are expected to modify those lifestyles and behaviors considered to be detrimental to the effective self-management of diabetes (Rayman & Ellison, 2000). As illustrated by the research described above, there is mounting awareness among clinicians and scholars that health care administrators and public policy decision makers must recognize and address the power of social and physical environmental factors if they wish to encourage healthy lifestyles and self- management behaviors.

There is further compelling reason to question the emphasis on individual behavior in the self-management of diabetes. Although not a component of the present study, it is noteworthy that a growing body of scientific literature concludes that physical, built-environmental factors other than personal behavior are implicated in the etiology and management of diabetes. These include factors range from chemical toxins

(Sharpe & Drake, 2013; Wang et al., 2010) to food additives such as high fructose corn

syrup (Goran, Ulijaszek, & Ventura, 2012), to poverty (Chaufan & Weitz, 2009). Hyman

(2010) concludes that chemical environmental toxins and pollutants are “key etiologic

factor[s] in the epidemic of obesity and diabetes, or what should be called ‘diabesity,’ the continuum of metabolic dysfunction from mild insulin resistance to end-stage

diabetes” (p. 56). Many researchers argue that “diabetes is a social disease” (Sobol-

Pacyniak, Szymczak, Kwarta, Loba, & Pietras, 2014, p. 1; Spero 2013); and several have conducted research implicating modern living factors including unemployment, toxic stress, inequities in social power, no or inadequate health insurance, food deserts, et al. in the etiology of diabetes. (Raphael et al., 2012, 2003; Chaufan, Constantino, & Davis,

2012; Green, Kerstetter, & Nylander, 2008). Jonietz (2012) comments that “decades of study into the causes of diabetes have produced no definitive answers”; and there is general agreement that diabetes is caused by a combination of factors (Causes of

Diabetes, National Institute of Diabetes and Digestive Kidney Diseases, 2015).

In view of the evidence implicating physical and social environmental as well as genetic and behavioral factors in the etiology and management of diabetes, continuing to emphasize individual behaviors and interventions, in effect, “blames the victim”

(Ryan, 1971) for her/his disease. The intent of this dissertation is to bolster further the argument that individuals are limited – at times severely – in their ability to self-manage diabetes.

Type 2 Diabetes and Overall Health Status

It is important to note that throughout all discussions in this document the terms

“self-managing diabetes” and “self-managing health in general” are conflated; that is, to

speak of the etiology and management of diabetes is to speak also of an individual’s

general health status. This is the case for several reasons.

First, a number of comorbid conditions are implicated in the onset and

management of diabetes, including cardiovascular disease, stroke, kidney disease, hypertension, retinopathy, neuropathy, poor oral health, vascular complications, cognitive

decline, depression, and illnesses affecting the gastrointestinal, musculoskeletal, and

respiratory systems (Fiore et al., 2015; National Diabetes Report, 2014, CDC; Schram et

al., 2014; Okosun et al., 2001).

Second, in part because of comorbidities, diabetes is a particularly complex

chronic illness to manage, requires a strict regimen of control, and affects every facet of

an individual’s life (e.g., physical, social, psychological, economic, et al.) (Kennedy &

Roberts, 2013; Whittemore, Melkus, & Grey, 2005; Cockerham, 2007).

Third, office visits for diabetes are complex and distinct from visits for other

chronic diseases and acute illnesses in matters affecting self-management (Bolen, Sage,

Perzynski, & Stange, 2015; Yawn, Zyzanski, Goodwin, Gotler, & Stange, 2001;).

Fourth, diabetes is common and increasingly prevalent: Two in every five adults

in the United States are expected to develop diabetes at some point in their lifetime

(Lipscombe, 2014).

Fifth, although the biological pathways remain unclear, excess weight (obesity) is

related to an increased risk of diabetes and has deleterious effects on comorbid

conditions (Burgio, Lopomo, & Migliore, 2015; CDC, National Diabetes Statistics Report,

2014; Pantalone et al., 2014).

Finally, obesity has reached “epidemic” proportions in the United States, and

current research suggests that physical and social environmental factors are highly

implicated in its etiology (Dietz, 2015: Sharpe & Drake, 2013; Holtkamp, 2012; Giskes, van Lenthe, Avendano-Pabon, & Brug, 2011). Consequently, any factors/variables relating to weight influence health in general and diabetes in particular. That being said, most obese individuals (75 to 80%) do not develop diabetes, obesity is not the number one and only cause of diabetes, and it is not uncommon for individuals who are underweight or of normal weight to develop the condition (Diabetes Myths, American

Diabetes Association, 2014; Jonietz, 2012).

Purpose of the Study and Research Questions

As will be described in greater depth in the section “Literature Informing this

Project” and as alluded to above, the literature linking and documenting the effects of social environmental factors on an individuals’ ability to manage diabetes is burgeoning.

Investigators, scholars, theorists, and policy makers worldwide are turning their attention and committing resources to addressing this phenomenon. Representative participation ranges from the International Diabetes Federation and DAWN studies to the CDC in the U. S. to researchers examining the effects of social environmental barriers at the individual level.

This dissertation grew out of the author’s involvement in the conduct of a qualitative research project (Bolen et al., 2015) exploring the delivery of diabetes treatment services in a primary care setting. The qualitative data for this project were collected from African American, economically disadvantaged adults with diabetes

28 receiving health care at an outpatient clinic of a large, metropolitan safety-net health system. In the United States, a safety net hospital or health system provides a significant level of care to low-income, uninsured, and vulnerable populations (National

Association of Public Hospitals and Health Systems, 2015). Some researchers define a

“safety net” clinic as one with >50% of patients on Medicaid or uninsured (Bolen et al.,

2015). The U. S. Department of Health and Human Services considers these populations

(along with others such as the elderly, children, women, rural, those with disabilities or needing chronic care, et al.) to be “priority” not only because they have historically been excluded from research initiatives but also because lingering health and healthcare disparities exist between them and more predominant populations (Agency for

Healthcare Research and Quality [AHRQ], National Healthcare Disparities Report, 2014).

The initial purpose of the Bolen “Essence of Primary Care” study (Bolen et al.,

2015) was to examine the influence of competing demands and opportunities of diabetes care, cancer screening, and overall patient care on the conduct of a routine, follow-up medical encounter (patient-physician medical visit). Unexpected themes emerged during the analysis of the data, most prominent of which was not only the compelling presence of social environmental obstacles adults with diabetes face in their efforts to self-manage the disease, but also the intricate, ingenious, and nuanced “work- arounds” or strategies they used to mitigate or overcome these obstacles.

Consequently, as discussed in the Methodology section, the data from the Bolen study form the basis of this dissertation.

This analysis and dissertation were undertaken to address the following two

questions: (1) From the perspective and in the words of the patients themselves, what

social environmental barriers do inner-city African American adults encounter in their

attempts to self-manage diabetes? and (2) What specific day-to-day micro and macro

strategies do these individuals employ in their attempts to surmount the identified

barriers?

Sociological Significance and Contribution

This dissertation addresses one of the core tensions in the social sciences: the

role of agency versus structure in ordering a life. Referring to the agency/structure

dialectic as “the central sociological question since the beginning of the discipline,”

Cockerham (2013, 2005) posits that “health sociologists have paid little attention to the

agency-structure debate” although it is “clearly relevant to theoretical discussions on a

number of topics” (2013, p. 127; Williams, 2003; Pescosolido, McLeod, & Alegria, 2000).

Cockerham’s (2005) Health Lifestyle Model reflects the view that lifestyle practices are

not simply matters of individual choice but rather reflect an individual’s “station” in life with regard to gender, age, race, neighborhood, class circumstances, living conditions, and “collectivities” (social relationship links such as religion, kinship, work, etc.). He defines “health lifestyles” as “collective patterns of health-related behavior based on choices from options available to people according to the life chances” (2013, p. 138).

As will be discussed later in detail, Cockerham’s lifestyle theory is central to the theoretical framework for this dissertation.

Although growing numbers of scholars are addressing social determinants of health in general and of diabetes specifically (Clark & Utz, 2014), the common discourse assumes – and remains – that it is the individual’s sole responsibility to fully and business completely carry out the physician’s prescribed diabetes management regimen. Most health research and the medical community itself continue to reflect the individualist paradigm, the belief that an individual possesses “the capacity for autonomous social action” in dealing with health issues (Cockerham, 2013; Gomersall,

Madill, & Summers, 2011; Vassilev et al., 2010).

This dissertation constitutes an effort to join the agency/structure/lifestyle dialectic. It contributes to this discourse by exploring and describing empirically how social structure mediates and moderate’s self-care and the lifestyle behaviors of socioeconomically disadvantaged adults with diabetes. The present study explores not only the barriers to diabetes self-management patients encounter in their day-to-day lives, but also the specific ways and practices they employ to work around those barriers. Although self-management is essential for people living with a chronic disease,

“the actual process of integrating self-management has not been explored in depth”

(Audulv, Asplund, & Norbergh 2012). This work is an effort to contribute to that understanding.

“…there have been few studies exploring self-management integration. Research is needed to describe how shifts in the self-management process occur and to explore barriers to and facilitators of the process” (Audulv, Asplund, & Norbergh, 2012; p. 333).

As noted earlier, African Americans are considered a “priority” population by government funding agencies for research and intervention services. And as detailed

above, they suffer an ongoing disadvantage relative to White Americans on both outcome (e.g., A1c, blood pressure, et al.) and process measures (i.e., the extent to which the receive recommended diabetes control/treatment services) of diabetes management. Because “there are few published studies that have addressed the facilitators and barriers to self-management among African American adults with diabetes,” this dissertation is intended to add to that discourse as well (Chlebowy,

Hood, & LaJoie, 2010, p. 899).

Finally, the experiences of the patients themselves have historically been overlooked in studies purporting to measure the effectiveness of diabetes care practices

(Egginton et al., 2012; Glasgow, Peeples, & Skovlund, 2008,). That is, biological measures are monitored (A1c, blood pressure, cholesterol, etc.) and physician “performance” is scrutinized; but the patients have been largely omitted from the evaluation equation

(Morrison, Shubina, Goldberg, & Turchin, 2013; Egginton et al., 2012).

Glasgow, Peeples, & Skovlund (2008) offer an extensive argument for including patients in measuring quality and performance and note that “most major diabetes performance measures … have not included self-management or psychosocial items” (p.

1046). In this vein, the intent of this paper is to give voice to socioeconomically disadvantaged (“priority” population) adults living with diabetes who at times struggle to attain and maintain health in a world, environmentally and socially, at odds with their intentions. This work explores the day-to-day macro and micro strategies that a disadvantaged population configures, in often innovative and astute ways, to

circumvent the systems, the structures, that not only fail to meet their healthcare needs

but, in fact, operate to hinder them.

There is little in American culture that is not mediated; what we hear or see on

television or read in newspapers or even hear in “first-hand” reports are versions of

reality, reality that has been interpreted by individuals and institutions (Couldry &

Hepps, 2013; Hjarvard, 2008; Baudrillard, 1994). Researchers themselves mediate all

phases of the research process, from a focus on funding sources to the questions we ask

of participants and the manner in which we choose to interpret and present the results.

In his 1963 text “Informal Sociology: A Casual Introduction to Sociological Thinking,”

William Bruce Cameron observed that “… not everything that can be counted counts, and not everything that counts can be counted” (Quote Investigator: Exploring the

Origins of Quotations). This dissertation presents evidence “that counts,” not in the language of means and standard deviations, but in the narratives of people with diabetes, in their own words.

Chapter Two: Theoretical Framework

Introduction

The theory catalyzing the design of this research analysis included the

contributions of Karl Marx, Friedrich Engels, several early agency/structure theorists

(including Bourdieu, Weber, and Giddens), and Cockerham’s Health Lifestyle Theory

(2013, 2005).

As noted earlier, writing this dissertation was not a linear process. It was ongoing, emergent, iterative, and at all times a process of discovery and rediscovery. At each step, theory, methodology, and analysis informed each other. Morever, in turn, all were informed by an ongoing exploration of the literature. Consequently, although

Cockerham’s model provided the “sensitizing theory” underpinning this study, a wider view of the “history” of the social determinants of health (SDOH) emerged.

Below is necessarily a snippet review of the “history” of theories and models used to explore the agency, structure, and health nexus as well as an overview of

Cockerham’s Health Lifestyle Model. In essence, theories of health promotion range from a focus on individual behavior change (e.g., health belief model) to interpersonal relationships (e.g., social support) to community or SDOH-level considerations (e.g., ecological approaches) (Glanz, Rimer, & Viswanath, 2015). Before this discussion, a review of the work of Marx, Engels, Bourdieu, Weber, and Giddens relating to the interplay of agency and structure is presented. Finally, the work of several theorists who advance a “social ecological” (SDOH) view of health promotion is reviewed. These theories, too, inform the analysis of this study.

Early Theorists and Conceptualizations of “Structure” and “Agency”

Karl Marx (The Eighteenth Brumaire of Louis Bonaparte) along with his colleague

Friedrich Engels was one of the most prominent critical thinkers to articulate a vision of the interplay of agency and structure. He famously observed, “Men make their own history, but they do not make it as they please; they do not make it under self-selected circumstances, but under circumstances existing already, given and transmitted from the past” (https://www.marxists.org/archive/marx/works/1852/18th-brumaire

/ch01.htm). More colorfully, he adds the ancillary reflection that “The tradition of all dead generations weighs like a nightmare on the brains of the living” (ibid). That is, humans may exercise agency but they do so in the context of the opportunities and constraints (the structure) of the time and the place in which they live and of the conditions under which they live.

According to Kuhn (2012), although “normal science” progresses in a linear and continuous way, periodic “paradigm shifts” occur that abruptly transform the nature of scientific inquiry in a field. Whether Marx’s work constitutes a paradigm shift or whether it reflects a linear continuation of work done by others, it is clear that scholars following in his footsteps have benefited from his genius. Paraphrasing Isaac Newton

(Letter to Robert Hooke, February 5, 1675), if subsequent theorists exploring the agency structure nexus “have seen further,” it was “by standing on the shoulders of giants,”

Marx in particular.

Although the concept of social structure is fundamental to the social sciences, “it lacks … precise technical definition within general sociological theory” (Williams, 2003,

p. 131; Sewell, 1992), and its use can often be “misleading” and “ambiguous” (Hays,

1994, p. 57). There is little to no consensus on its definition despite the fact that social

scientists would find it impossible to do their work without the term (Musolf, 2003;

Hays, 1994; Sewell, 1992; Giddens, 1984). And it is noteworthy that although sociology’s founding fathers (e.g., Marx, Durkheim, Weber, and Simmel) consider issues of

“structure” in their work, they neither provide a “technical, focused treatment” of it nor offer “significant statements about it” (Michie, 2001, p. 1529).

Considering the surfeit of definitions and interpretations of “structure,” for purposes of this project, references to structure reflect Musolf’s (2003, p. 1) elegant and succinct definition:

Structure refers to the innumerable social facts over which the individual, qua individual, does not have much control and which he or she cannot escape. Race, class, sex, ideology, institutions, organizational hierarchy, groups, geographical location, period of history, mode of production, generational cohort, family, culture, roles and rules are all examples of social facts, the structural dimension of social life. We are born into situations that have existed before us and that will exist after we are gone. In general, structure refers to social arrangements, social relations, and social practices which exert enormous power and constraint over our lives.

Similarly, definitions and interpretations of “agency” abound and depend largely on a scholar’s goals and epistemological roots. The definitions of “agency” presented are often “quite slippery” (Hitlin & Elder, 2007). In the “purist,” literal sense, “agency” can be defined as, “The capacity for autonomous social action.” Agency commonly refers to “the ability of actors to operate independently of the determining constraints of social structure” (Dictionary of the Social Sciences). Blumer (1986) and Simmel (Wolff,

1950) would most likely adopt this restrictive definition, since, to them, social systems

36 are largely abstractions and cannot exist apart and independently of how individuals

“act” and relate to one another.

In contrast, Giddens’ (1984) structuration theory presents a middle-ground interpretation of the relationship between agency and structure. It posits that the two cannot be conceived apart from each other. In doing so, Giddens emphasizes a “duality” of structure and agency such that neither dominates the other. However, some theorists contend that Giddens “exaggerates the powers of agents at the expense of structural constraints” (Baber, 1991, p. 219; Frohlich, Corin, & Potvin, 2001).

At the opposite end of the spectrum, Bourdieu (1977, pp. 82-83), while recognizing the role of social action (agency) in explaining the recurrence of social practices over time, ultimately privileges structure over agency as demonstrated by his definition of habitus:

“…understood as a system of lasting, transposable dispositions which, integrating past experiences, functions at every moment as a matrix of perceptions, appreciations, and actions and makes possible the achievement of infinitely diversified tasks.”

While individuals may be free to make choices in adopting a lifestyle, their “choices tend to be consistent with their habitus” (Frohlich et al., 2001, p. 789). In the end, in counterpoint to some theorists’ views that structure can never completely determine agency, it is also clear that “there is no hypothetical moment in which agency actually gets ‘free’ of structure…” (Emirbayer & Mische, 1998, p. 1004; Cockerham, 2013, 2005).

As a framework for this project, I adopt Bourdieu’s conceptualization that habitus reigns over agency. In doing so, I again refer to a Musolf (2003, p. 3) definition, basically a rewording of Marx (“Men make their own history, but they do not make it as

37 they please…”): “agency… refers to the fact that we make culture, history, and policy, though not under conditions of our own choosing.”

Cockerham’s (2005) Health Lifestyle Model – a Nexus of Structure, Agency, and Health

Citing the “lack of a coherent and fully-realized theoretical paradigm” that defines the predominant role of structure in shaping an individual’s health lifestyle choices, Cockerham presents a “preliminary” (his term) health lifestyle theory and model (Figure 1 below) (Cockerham, 2005; p. 56). In formulating his model, Cockerham draws extensively from the work of Weber and, to a lesser extent, Bourdieu and also references abundant empirical evidence to support his inclusion of variables and the causal relationships among them (Cockerham, 2005)

Figure 1. Cockerham’s health lifestyle model

Class Circumstances (most powerful influence) Socialization Age, Gender, Race/Ethnicity Experience Collectivities, Living Conditions

Life Choices Interplay Life Chances (Agency) (Structure)

Dispositions to Act (Habitus) (People internalize class conditions;

structures become embodied) Alcohol use Smoking Diet Practices (Action) Exercise Checkups Seatbelts

Health Lifestyles – Collective Etc. Phenomenon (Dispositions acted upon tend to reproduce/modify the habitus from

Cockerham (2005) derives his characterization of lifestyle from Weber’s (2002) thesis, as explicated in The Protestant Ethic and the Spirit of Capitalism, that social action occurs not as a result of individuals acting alone, disconnected from the thoughts and actions of others, but rather is a collective phenomenon reflecting a particular society’s institutions and belief systems. Cockerham defines “health lifestyles” as

“collective patterns of health-related behavior based on choices from options available to people according to their life chances.”

Cockerham also applies Weber’s notions of agency (“life choices”) and structure

(“life chances”) as the focus of his model and highlights the dialectical relationship between the two. Cockerham interprets Weber’s idea to mean that although an individual may choose how to conduct or manage one’s life (Lebensführung), s/he does so in the context of the constraints and opportunities provided by “chance”: “Weber’s thesis is that chance is socially determined, and social structure is an arrangement of chances” (Cockerham 2005, p. 60). Consequently, although the causal relationship is depicted as two-way, Cockerham clearly aims to demonstrate that there are “times when structure outweighs but does not negate agency and other times when structure overwhelms agency” (Cockerham 2005, p. 64).

In the model, Cockerham perceives structure as a composite of several variables that form one’s “life chances”: class circumstances, age, gender, race/ethnicity, collectivities, and living conditions. Although he does not formally define “class circumstance,” Cockerham draws on Marx’s work and suggests that “class” includes spending patterns as well as education, income, and occupation. Although Cockerham

considers that several variables comprise structure, his reference to Bourdieu’s study

(1984) as “seminal” in “detailing class as the most decisive variable in the determination of health lifestyles” strongly suggests that, in this model, class assumes a dominant position. He also invokes Bourdieu’s concept of the “distance from necessity” in emphasizing that lifestyle choices are determined largely by one’s standing economically. That is, the more time, energy, and money one must expend simply to acquire the necessities of life, the more one’s agency is circumscribed.

Noting that Weber did not include age, gender, and race/ethnicity in considerations of stratification, Cockerham cites several studies demonstrating the significance of these ascribed statuses in influencing a person’s health lifestyles, and ultimately her/his health and wellbeing. While research exploring the linkages between class, age, and gender with lifestyles is abundant, Cockerham maintains that race and ethnicity, although presumed to be significant, have received less attention with regard to specific health practices and more with regard to morbidity, mortality, and the construction of health profiles.

“Collectivities,” the third structural category in Cockerham’s model (in addition to those discussed above, class circumstances and age, gender, and race/ethnicity), refers to “collections of actors linked together through particular social relationships, such as kinship, work, religion, and politics” (2005, p. 59). Because a collectivity is a group of people who share similar beliefs, norms, and values, it acts as a structural factor that affects one’s life chances as well as life choices, presenting barriers and opportunities in crafting a healthy lifestyle (Cockerham, 2005). That is, an individual’s

health choices and lifestyle are not solely matters of personal choice or taste, decided

alone and disconnected from the behaviors of others, but rather reflective of the

behaviors of an aggregate of individuals, a “collectivity,” who share similar beliefs and

norms.

Finally, Cockerham includes “living conditions” as a structural variable, and he believes that research demonstrating this connection is relatively scarce (2005, p. 59).

As one would expect, Cockerham defines “living conditions” as those variable pertaining

to the accessibility of safe, affordable, quality housing and, in turn with that housing,

utilities sufficient to maintain life (basic and adequate plumbing, water, sewers, gas,

heating, electricity, etc.) as well as neighborhood factors such as threat of crime,

recreational opportunities, accessibility to health care, quality and number of grocery

stores, etc.

The four structural categories outlined above not only collectively constitute “life

chances,” but also provide the social context for “socialization” and “experience” which

in turn influence “life choices” (agency). In a two-way causal relationship, “life choices”

and “life chances” interact to constitute an individual’s “dispositions to act” (2005, p.

64), or habitus. Habitus then leads to “practices” or “action” (specific behaviors such as

smoking, diet, exercise, et al.), the patterns of which ultimately form a “lifestyle.” The

three variables - habitus, practices, and lifestyle - together form a causal feedback loop; that is, Cockerham views “dispositions to act” (habitus) as an intervening variable that affects the “practices” that ultimately constitute a “lifestyle.”

Consequently, Bourdieu’s contribution to the model in this regard is twofold.

First, his conceptualization of habitus, as discussed here and earlier, describes the process through which “mental structures” (agency) and “the world of objects”

(structure) become linked: An individual internalizes objective, external, social structures and then incorporates them into her/his own personal thought and perceptual processes. Structures become embodied, with little if any conscious realization of their existence and power, and often work in a pre-reflexive way (Hitlin &

Elder, 2007; Cockerham, 2005; Frohlich et al. 2001; Sewell, 1992; Bourdieu, 1977).

Secondly, the feed-back loop recognizes Bourdieu’s “assertion that when dispositions are acted upon, they tend to reproduce or modify the habitus from which they are derived” (Cockerham, 2005, p. 63; see also Hitlin & Elder, 2007). Characterizing his model as an “initial representation of the health lifestyle phenomenon,” Cockerham invites researchers to modify, reject, or verify his theory through empirical application

(2005, p. 64). That is the intent of the present study.

While Cockerham and Bourdieu provide sociological perspectives on the nexus of agency (“life choices”) and structure (“life chances”) in health self-management, the medical community increasingly recognizes the power of social and physical environmental factors in constraining individuals’ behaviors and seeks to address these issues in practice (Tipirneni, Vickery, & Ehlinger, 2015; Stange, 2014; Ferrer & Carrasco,

2010; Mercer & Watt, 2007; Smith & Weaver, 2006). Ferrer and Carrasco (2010) propose a clinic-based “capability framework” in which the physician assesses a patient’s “capability” defined as the “real opportunity to achieve a desired lifestyle” (p.

454). Their framework is analogous to Cockerham’s conceptualization of “life chances”:

They propose that physicians during the medical encounter directly ask patients about the social barriers they face in attempting to adhere to diet, exercise, medication and other health recommendations (e.g. “Can you afford to buy fresh fruits and vegetables?

Are fresh fruits and vegetables for sale where you usually shop for food? Do you have other duties [such as caring for a parent] that make it hard to be physically active” and so forth). Ideally, the physician would then “connect” the patient with community resources available to help them surmount those barriers. Ferrer and Carrasco similarly

(to Cockerham, 2005) reflect that “without support for healthy lifestyles, the freedom to pursue health is illusory for those with the will but not the means to do so,” p. 455.

Theories and Models of Social Determinants of Health

As demonstrated in the above review, Cockerham’s model connects the agency/structure tension with medical sociology, specifically health lifestyles (behavior), the core concern of this project. He considers that lifestyles (behaviors) do not emerge from pure agency but rather are largely (and sometimes always) dependent on the structural organization of society. That is, health and illness are “something more than either an individual-lifestyle-choice or the one-way outcome of structural determinants”

(Williams, 2003, p.145; Raphael, 2006). Most importantly, in attempting to restore structure to its “appropriate position,” he critiques and challenges the individualistic paradigm that dominates the discourse in the social and behavioral health sciences and argues that this approach “neglects the structural dimensions of . . . lifestyles and has limited applicability to the empirical world” (Cockerham, 2005, p. 51-52; Williams, 2003;

Frohlich et al., 2001; Archer, 1995). These factors, largely and often beyond an

individual’s power to control, in turn interact with that person’s ascribed and achieved

statuses to effect behavior, i.e., lifestyle choices.

Cockerham’s model, however, proved to be limited in considering physical and

social environmental influences on only individual behavior. Individual behavior is but

one of several factors influencing health status. As will be discussed below and

illustrated with several model schematics, scholars and other stakeholders increasingly consider that social determinants of health are multileveled, interactional, and involve numerous factors in addition to individual behavior. Theorists, researchers, and practitioners – and other interested parties - have linked hundreds of physical and environmental factors with health status (and, specifically, with diabetes etiology and management) at both the individual and population levels (see definition of “social environment” and “social determinants of health” [SDOH] and a discussion of these variables in Chapter Four). Below I briefly trace an historical trajectory from the beginning of “social medicine” through the present day worldwide emphasis on SDOH. I then discuss the specific ecological (SDOH) health theorists who informed this analysis.

It is important to repeat that discussions in this document conflate “diabetes” with “general health” self-management; that is, to self-manage diabetes is to self- manage health in general. As noted in an earlier section, this is the case for several reasons: diabetes affects all body systems; diabetes is associated with multiple comorbidities; treating diabetes is complex and demanding for the physician as well as the patient; the prevalence of diabetes is increasing; excess weight is related to

increased risk of diabetes; and obesity has reached epidemic proportions in the United

States (Burgio, Lopomo, & Migliore, 2015; CDC, National Diabetes Statistics Report,

2014; Pantalone et al., 2014).

Brief Review of History of SDOH/Social Ecological Model

Considered by some to be the founder of social medicine, Rudolf Virchow, a 19th

century pathologist reflected, “Do we not always find the diseases of the populace

traceable to defects in society?” (cited in Irwin & Scali, 2007, p. 236; Anderson, Smith &

Sidel, 2005). Similarly, his contemporary and like-minded theorist Friedrich Engels observed, “. . . all this taken together is explanation enough of the excessive mortality in these unhappy abodes of ﬁlthy misery” (Engels, 1844, Project Gutenberg eBook).

Before their work in the mid-1820s, the French physician Louis René Villermé

(1782-1863) conducted one of the first empirical studies linking population health to the larger social environment. His 1826 study established that mortality rates varied across neighborhoods and were patterned by poverty and wealth (Krieger, 2001). Moreover, he found there to be a “continuous socioeconomic gradient” (p. 899) in health status and mortality. That is, the social gradient in health runs from the top to the bottom of the spectrum; the wealthy have better health than the middle class. The middle class is healthier than the poor, and so on.

Other subsequent studies, particularly the Whitehall I (1967) and Whitehall II

(1985) studies, verified the existence of health differences by class (Marmot, et al.,

1991). These early (and later) investigations notwithstanding, the nexus of the ills of society and poor health has been understood since ancient times. As documents from

the sixth to fourth centuries B.C. affirm, the Greeks posited that disease and health

were dependent on the physical and social milieus in which individuals live, not matters

involving supernatural machinations (Tountas, 2009).

For hundreds of years scholars, academics, clinicians, researchers, intellectuals,

et al. have studied, theorized, researched, analyzed, and disseminated a vast body of

evidence substantiating the profound influence of social environmental factors on

population health and well-being (see, for example, Navarro & Muntaner, 2014;

Navarro, 2009a; Navarro, 2009b; Navarro, et al., 2006; Navarro & Shi, 2001; Braveman

& Gottlieb, 2014; Sales & Schlaff, 2010; Tountas, 2009; Link & Phelan, 1995; Durkheim,

2005 (original published in 1897); Marx, 1869; Engels, 1844).

Research, initiatives, publications, and interventions exploring SDOH have accumulated most dramatically during the past two decades (Braveman & Gottlieb,

2014), most notably after the 2008 report published by the World Health Organization’s

(WHO) Commission on Social Determinants of Health. There is now agreement among some scholars that social and physical environmental factors supersede access to and quality of care as determinants of individual and public health (Bierman and Dunn,

2006). Given the increased interest in the role of SDOH over the past two decades and the concomitant burgeoning of its literature base (see Chapter Four), one might surmise that the recognition is novel. Clearly awareness of the powerful influence of physical and social environmental factors on health is far from recent (Navarro, 2009a).

The literature generally considers five factors as being instrumental health determinants: biology and genetics, individual behavior, social environment, physical environment, and health services (Determinants of Health, CDC, 2015).

Several scientists now reason that social and physical environmental factors supersede all others in influencing health (Allegrante, 2015; Braveman & Gottlieb, 2014;

Bierman & Dunn, 2006; Tarlov, 1999). Because most diseases and injuries involve multiple potential causes and contributing factors, it is difficult to estimate the contribution of any one factor to mortality and morbidity (Braveman & Gottlieb, 2014).

In some cases, researchers attribute more influence to behavioral rather than to

SDOH variables; other researchers argue that SDOH variables eclipse medical care and individual behavior as influences on health status (Braveman & Gottlieb, 2014). Figure 2 below outlines the estimates of the impact of several factors on health as suggested by

McGinnis, Williams-Russo, & Knickman (2002), The Canadian Institute of Advanced

Research (2012), and Bunker et al. (1995).

Although the actual numbers differ, it is clear that these scholars recognize that

“social circumstances,” “socioeconomic factors,” and “other factors” contribute to health status to a significant degree, often to a greater extent than “health care” and

“behavior.”

Figure 2. Estimates of the impact of “the broader determinants of health” on population health

McGinnis et al. (2002) The King’s Fund (2012) Bunker et al. (1995)

As will be discussed below and in the Chapter Four, interest in and recognition of

the influence of the “cause of the causes” (e.g., distal, upstream, SDOH) of health status have increased dramatically in the last two decades. In 1980 a Department of Health and Human Services (DHHS) report attributed 50% of mortality to individual behaviors and 0% to “social circumstances” (Health Policy Brief, Robert Woods Johnson [RWJ],

2014). In contrast, an analysis by Booske, Athens, Kindig, Park, and Remington in 2010 estimated that health status depends primarily on “social circumstances” (40%) followed by individual behavior (30%) (Health Policy Brief, RWJ, 2014). These authors attributed only 20% to “medical care” variables. Scholars note, however, that behavior itself is affected by upstream factors in complex interactions and through multiple pathways (Health Policy Brief, RWJ, 2014). Regardless of the differences in estimates, however, researchers are increasingly calling into question the criteria traditionally used to assess evidence of health status (Braveman & Gottlieb, 2014; Booske et al., 2010).

Causes of death and morbidity in the U. S. have changed over the past century.

Initially, (roughly between 1930 and 1950) the leading causes of death (e.g., pneumonia,

influenza, tuberculosis, infection, et al.) were attributable to unhealthy living

environments such as poor sanitation, poor food supply, poor prenatal and infant care,

and dangerous occupations and work place conditions. Subsequently, public policy was enacted to safeguard the health and safety of the population and included laws regulating such things as food quality, highway safety, occupational safety, and the

control of infectious disease. Consequent to these public policy changes there were

significant reductions in communicable diseases and maternal and infant mortality.

(Booske et al., 2010; Changes in the Public Health System, Morbidity and Mortality

Weekly Report [MMWR], 2000; Health Achievements, MMWR, 1999).

In the 1950s there was increasing interest in and emphasis on the role of the

medical system, the delivery of health care, in promoting health particularly because the leading causes of death became chronic illnesses (e.g., cancer, heart disease, diabetes, et al.) rather than infectious agents. Although continuing attention was paid to preventive measures (e.g., vaccinations, improved prenatal care), the health care system as a whole focused on the treatment of disease (Booske et al., 2010). As a result, by the 1970s the U.S. had – and still retains – the distinction of being the most expensive health care system in the world (Davis, Schoen, & Stremikis, 2014; Booske et al., 2010). At the same time, the U. S. ranks last among eleven industrialized countries in overall quality of and access to health care (Davis et al., 2014).

By the 1970s and into the 1990s health promotion and illness prevention efforts focused on risk factors and individual behavioral choices. Stakeholders (e.g., researchers, clinicians, policy makers, academics, theorists, interventionists, et al.)

increasingly understood that health and illness depended upon more than access to and

delivery of health care services. Large scale population studies [e.g., the Framingham

Heart Study (Mahmood, Levy, Vasan, & Wang, 2014), the CDC’s Behavioral Risk Factor

Surveillance System] began to highlight and monitor the contribution of behaviors (risk

factors) such as smoking, alcohol use, unprotected sex, poor diet, lack of exercise, not

using seat belts, et al., to chronic illnesses such as heart disease, cancer, stroke, and lung

disease (Booske, et al., 2010; Minkler, 1989).

In a “now famous paper” (Booske et al., 2010, p. 2), McGinnis and Foege (1993)

published “Actual Causes of death in the United States” in which they demonstrated

that many deaths were due to preventable causes such as those listed above (including,

in their list, death by firearms). Although they acknowledged that “socioeconomic

status” and “access to medical care” influenced mortality rates, the authors wrote that

these variables were “difficult to quantify independent of other factors” (McGinnis &

Foege, 1993, p. 2207) and thereby excluded them from their calculations. In the ensuing years, changing individual behavior became - and remains - the focus of theory, research, and practice (Golden & Earp, 2012); and, as noted above, population-level

behavior surveillance systems and surveys were (and continue to be) well-entrenched health promotion staples.

Ecological Models of Health and Health Promotion (SDOH)

Although health promotion interventions continue to focus on individual behavior (Golden, McLeroy, Green, Earp, & Lieberman, 2015; Golden & Earp, 2012), by the beginning of the 21st century scholars increasingly began to explore “upstream”

(also known as distal, fundamental) variables (“causes of the causes”) as well as

“downstream” (proximal) determinants of health status and behavior/lifestyles

(Braveman & Gottlieb, 2014; Krieger, 2008; Booske et al., 2002; Link & Phelan, 1995).

The key models, definitions, and dimensions of what came to be known as the

“social ecological” model of health and health promotion were first elucidated in the

1980s, formally theorized in the 1990s, and emerged from several disciplines. Early contributions to its conceptualization were offered by Brofenbrenner (1979), McLeroy,

Bibeau, Steckler, & Glanz (1988), and Stokols, et al. (2000, 1996, 1992) (three of the

models applied to this analysis and discussed below).

Theorists, researchers, academics, and other stakeholders over the years have

contributed to, refined, amended, or otherwise adjusted their basic, nascent

conceptualizations. Although the ensuing models may differ slightly in some respects

(variables included, definitions, concepts, etc.), they are all similar in recognizing the

role of the social and physical environments in shaping health. Richard, Gauvin, and

Raine (2011, p. 308) define an ecological model as “a formalized conceptualization of

the individual and environmental determinants of health behaviors and public health

outcomes.”

Attention to and application of the ecological theory flourished particularly after

publication of the 2008 final report of the WHO’s Commission on Social Determinants of

Health and the resurgence of interest in social health inequalities (Braveman & Gottlieb,

2014; Golden & Earp, 2012; Richard, Gauvin, & Raine, 2011; Marmot et al., 2008). A compilation of those contributing to the “social ecological” literature over the years,

from Virchow to scholars publishing in this field today (e.g., prominently Marmot,

Glasgow, Braveman, Sallis, R. Walker, Cockerham, et al.) (ISI Web of Science, InCites

Essential Science Indicators) would be a time-consuming task of some magnitude.

Several scholars have studied SDOH in relation to the etiology and treatment of diabetes

specifically (e.g., Peyrot, Ritholz, Walker, Whittemore, Chaufan, Lopez-Class, Lutfey,

Bhattacharya, Gomersall, Henderson, Hill, Nielsen, Fox, Stuckey, et al.), and their work is

discussed and cited in Chapter Four.

The core feature of an ecological approach recognizes that there are multiple

levels of influences on health and that these levels are interactive and reinforcing

(Health Policy Brief, Robert Wood Johnson Foundation [RWJ], 2014; Golden & Earp,

2012; Cockerham, 2005; Stokols, 2000, 1996, 1992). That is, there is reciprocal causation

between individuals and their environment for all types and at all levels of influence;

behavior influences and is influenced by a person’s physical and social environment

(Glanz, Rimer, & Viswanath, 2015; Stokols, Grzywacz, McMahan, & Phillips, 2003).

In addition to multiple determinants of health, there are also multiple dimensions (e.g., mortality, morbidity, function, well-being, et al.), multiple causal pathways (the determinants influence each other directly and/or indirectly, as mediators and/or moderators, and in turn may be used as predictor or outcome variables), and, as noted earlier and a model upon which this analysis is based, multiple levels of influence (intrapersonal, interpersonal, institutional/organizational, community, and public policy) (Health Policy Brief, RWJ, 2014; McLeroy, Bibeau, Steckler, & Glanz,

1988).

Sallis, Owen, and Fisher (2008) propose two additional core principles of an ecological approach: (1) that multi-level interventions will be most effective in changing behavior and promoting population health in contrast to what has historically been a focus on individual behavior alone; and (2) that ecological models will be most powerful when they are behavior specific. The authors argue that environmental and policy variables are “specific to each behavior”: “… lessons learned with one behavior may not be applicable to a seemingly similar behavior; for example, promoting jogging may not translate to an apparently similar behavior, for example, promoting walking to work” (p.

270).

Figure 3 below is an example of a social ecological model applied specifically to

“active living”/physical activity (Sallis, Cervero, Ascher, Henderson, Kraft, & Kerr, 2006).

Additionally, there is increasing emphasis on including life course, generational factors in SDOH models: “feedback loops among health determinants play out over the life course, intergenerationally, and at both the individual and the population and community levels …” (Health Policy Brief, RWJ, 2014).

Figure 3. Ecological model of four domains of active living (Sallis, et al., 2006; p. 301)

Discussed below are interpretations of the ecological (SDOH) models that

informed the coding structure and analysis of this report (in addition to Cockerham’s),

specifically those elucidated by McLeroy et al. (1988), Stokols (1996), Brown et al.

(2004), and Walker et al. (2014b). While the former two present models applicable to health in general, the latter two offer a conceptualization of the relationships and processes among SDOH and health outcomes in adults with diabetes specifically.

Ecological/SDOH Models Informing Analysis and Coding Structure

Much of the early work on formalizing a SDOH theoretical structure was based on Urie Bronfenbrenner’s (1977) ecological systems theory of child development. 54

Bronfenbrenner, a developmental psychologist, proposed a five-tier structure (adapted by McLeroy et al., 1988) of influences on human development: microsystems (e.g., a student’s home environment), mesosystems (e.g. a student’s parents’ relationship with his/her teachers), ecosystems (e.g., the influence on a child of his parents’ losing their jobs), macrosystems (i.e., the student’s total cultural environment, the economy, religion, values, political systems, et al.), and chronosystems (i.e., environmental changes over time, changes over the life course) (Bronfenbrenner, 1977).

Bronfenbrenner also included the concept of “proximal processes” to his basic model: the idea that person/environmental interactions, “to be effective,” must occur

“on a fairly regular basis over extended periods of time” (p. 38). Such processes, occurring over time, can be advantageous or can present barriers to health-related outcomes (Grzywacz & Fuqua, 2000). This writer suggests that Bronfenbrenner’s

“proximal processes” are conceptually similar to Bourdieu’s idea of “habitus”: person/environment interactions occurring over expanses of time influence lifestyle choices. Figure 4 below presents a schematic of Bronfenbrenner’s model.

Figure 4. Bronfenbrenner’s model of human development (1977)

McLeroy, Bibeau, Steckler, and Glanz (1988, p. 355) offer a version of the

ecological model (see Table 1) similar to Bronfenbrenner’s (Figure 4) designating five

levels of influence on human behavior: intrapersonal factors (e.g., knowledge, beliefs,

attitudes, skills, and developmental history, etc.), interpersonal processes (e.g., family,

work group, friendship networks, etc.), institutional factors (e.g., social institutions with

both formal and informal rules and regulations), community factors (e.g., built

environment, neighborhood associations, cleanliness, transportation, leadership,

businesses, walkability, green space, noise, crime, etc., within “defined boundaries” [p.

355]), and public policy (i.e., local, state, and national laws, regulations, and policies such as increased taxes on cigarettes and alcohol, seat belt and speed limit laws, tax laws, labor laws, foreign policy, etc.).

Table 1. Ecological model of health behavior (McLeroy, Bibeau, Steckler, and Glanz 1988, page 355; Stokols 1996; Lopez-Class and Jurkowski 2010, pages 809-810)

Examples relating to self- Level of influence Description management of diabetes Intrapersonal Characteristics of the individual Knowledge, attitudes, skills factors such as knowledge, attitudes, related to self-management of behavior, self-concept, skills, diabetes; historical cultural and etc. This includes the familial influences on diet, developmental history of the exercise, smoking et al. individual. Interpersonal Formal and informal social Social support and social processes and network and social support relationships that influence primary groups systems, including the family, behavior both positively and work group, and friendship negatively networks Institutional factors Social institutions with Health care systems’ impact on organizational characteristics, health care seeking and care and formal (and informal) rules experiences, insurance carrier and regulations for operation. policies, clinic hours, wait time, cost of care, clinician guidance, language barriers Community factors Relationships among Availability and location of health organizations, institutions, and clinics, access to healthy foods informal networks within and places to safely engage in defined boundaries. physical activity, availability and affordability of public transportation Public policy Local, state, and national laws Regulation or policies related to and policies health care funding on a local, state, or national level; other economic, social, political, and legal policies affecting health and well being

Stokols provides an “applied translation” of the McLeroy et al. model

(Butterfoss, Kegler, & Francisco, p. 337). Among the early adapters of the McLeroy model, Stokols (2003, 1996, 1992) was particularly interested in exploring organizational and community factors that were “especially health promotive” (1992, p. 7). He deemed these to be “environmental leverage points” and considered their identification to be an

“important task” for research and practice (p. 7).

Scholars label as leverage points those factors that “exert a disproportionate amount of influence” on a particular behavior or health outcome (Grzywacz & Fuqua,

2000, p. 103; Stokols, Pelletier, & Fielding, 1996). While the McLeroy et al. model outlined the five general classes of influence (as discussed above), Stokols emphasized health supportive environments and focused on the concept of “community capacity for health improvement.” He conjectured that “community capacity” included not only material resources (e.g., financial assets, natural resources, technological capital, et al.) but also social, human, and moral capital. For example, he considers community assets to include the mobilization and coalescing of community leaders, individuals who contribute their time, expertise, creativity, and energy to promote the general health of the community.

Further, he describes “moral capital” as being an “investment of personal and collective resources toward the cultivation of virtue and peace” (Stokols, Grzywacz,

McMahan, & Phillips, 2003, p. 6). Stokols (1996) moved from theoretical considerations to practical application by offering guidelines for community health promotion.

Finally, the framework for the analysis and coding structure used in the present study incorporates the SDOH/diabetes models proposed by Brown et al. (2004) and

Walker et al. (2014b). The models at their core are similar, but differ slightly in the factors they include as predictor variables. Importantly, unlike the more general health promotion conceptualizations presented earlier, both the Brown and Walker models include “proximal” (Brown et al., 2004, p. 66) mediator and moderator variables pertaining to the treatment and management of diabetes specifically. These include

58 variables relating to individual behaviors, (e.g. blood glucose monitoring, diet, exercise), access to care (e.g., affordability, physical access, and “acceptability not merely adequacy of supply” (Gulliford et al., 2002, p. 186), and the processes and quality of care

(e.g., Does the patient receive a dilated eye examination each year? A foot examination on a regular basis?). Both models also include ascribed status variables (e.g., race, sex, age) and socioeconomic variables (e.g. income, employment, education, occupational prestige) as predictor variables. They differ in the respect that the Brown model includes community and neighborhood factors (e.g., crime rates, access to healthy food, environmental exposures, et al.) while the Walker model considers psychosocial variables as SDOH (e.g., social support, self-efficacy, fatalism, et al.). The Brown model also includes a greater number and variety of health outcome measures than does the

Walker model although they both include diabetes intermediate outcomes such as glycemic control, lipid management, and medication management. See Figure 5 and

Figure 6 below for illustrations of their conceptualizations of the SDOH and diabetes nexus.

Figure 5. Socioeconomic position and health among persons with diabetes – a conceptual framework (Brown, et al., 2004, p. 66)

Figure 6. Modified model adapted from Brown et al. (2004) – socioeconomic and psychological SDOH in patients with diabetes (Walker et al., 2014a)

Finally Figure 7 below presents the World Health Organization’s Social

Determinants of Health conceptual framework (2010) and, along with the above models, serves to frame the analysis and interpretation of this study’s findings. Unlike the above-discussed and illustrated models of SDOH, the WHO framework prominently includes macro-level economic, social, and health policies, and situates individual

“behaviors” at a less powerful level of influence than do other models. The WHO describes “individual behavior” as a “third,” “intermediary determinant” of health, not a

“primary determinant” (Solar & Irwin, 2010, p. 6) as do the models proposed by

Cockerham, Brown et al., and Walker et al.)

Figure 7. A conceptual framework for action on the social determinants of health (Solar & Irwin, 2010, pg. 6)

Analysis and interpretation of this study’s findings were informed by the five

models presented and discussed above (Cockerham, McLeroy et al., Brown et al.,

Walker et al., and the WHO model of SDOH).

Considering these five models in relation to the empirical work of this project effected an application of Goldkuhl and Cronholm’s (2010) Multi-Grounded Theory

(MGT), labeled “theoretical matching.” “Theoretical matching” means that “evolving

theory is confronted with other existing theories” (2010, p. 197). Going beyond the

pure inductivist approach of GT, the authors propose that theory be developed not only

from empirical data but also by considering the role of preexisting theories. Using a

purely inductive method, grounded only in the data, they argue, implies a lack of prior

knowledge and may amount to “reinventing the wheel.” Rather, they suggest that

researchers compare and contrast empirical findings and abstractions with those of

other theories: “We claim that theory development should aim at knowledge

integration and synthesis” (2010:188). That, too, was the intent of the analysis herein.

Figure 8. Multi-grounded theory as a dialectical synthesis between inductivism an deductivism (Goldkuhl and Cronholm, 2010, p. 192).

Empirically-driven Theory-driven analysis analysis

“inductivism” “deductivism”

Multi-Grounded Theory

“combined view”

Chapter Three. Methodology

Introduction and Background

Two factors distinguish this dissertation and the research upon which it is based from what this author considers a “typical” sociology dissertation:

First, its content and format reflect an extensive exploration and analysis of both theory and empirical results. In effect, this document is a hybrid of a “theoretical” and an “empirical” dissertation design. Although social science dissertations in general contain some consideration of the theoretical thought underpinning their conduct, this text discusses that theoretical framework in greater depth and entails a more expansive consideration of both theoretical and substantive literature. The author explores, compares, contrasts, and synthesizes the work of several scholars with regard to their explications of the agency/structure tension in the discipline and/or the role of individual lifestyle in health management.

Additionally, reviews and considerations of theory and substantive literatures were ongoing from the inception through the analysis of the results of the research and infused all aspects of the methodological and analytic approaches used. Typically, the literature review is conducted before empirical work commences although some grounded theory researchers argue that the literature review should be done after data collection (Glaser & Strauss, 1967). In the present study, this author adopted a middle ground approach and maintained an on-going dialogue with the literature as analysis proceeded (Dunne, 2011; LeCompte, Preissle, & Tesch, 1993).

The second factor affecting the conduct of the study and the presentation of

results is that data analysis proceeded in two distinct stages. In the first analysis, this

author worked as a co-investigator with a clinician-researcher, Shari Bolen, MD, MPH,

(2015) on a qualitative study exploring the delivery of diabetes care at a primary care

clinic of a safety net hospital system in an East North Central state. The research

consisted of observations of medical encounters (the patient’s office visit with the

physician) and personal interviews with both the clinicians and the patients.

Three “sensitizing concepts” (Blumer, 1954) initially guided the coding and

interpretation of the first phase of data analysis: The numbers and types of issues

patients and physicians discussed during the medical encounter, the context of the visit

relating to when and why physicians intensify diabetes medication, and how competing

demands and opportunities (from the perspective of the physician only, not the patient) influence diabetes follow-up, cancer screening, and care of the whole person during the visit. Only the medical encounter data were analyzed for the Bolen (2015) study.

Research is rarely conclusive or exhaustive. The research process does not end after a question is answered or a hypothesis rejected or accepted. Results of a study, regardless of discipline, suggest new research questions; and the cycle begins again:

Research begets more research (Leedy & Ormrod, 2010). In this case, the research team was surprised by the complexity of the medical encounters and the numbers and breadth of the issues discussed. While physicians were more likely than patients to initiate discussions of chronic illness, health behaviors, and prevention issues, patients brought into the exam room with them myriad social environmental issues (social,

psychological, economic, community, et al.) affecting their health status and health

behaviors. An additional unsolicited and unanticipated finding of the research was that

patients described at length, often colorfully, and without prompting, the steps they took to overcome, to “work around,” the barriers they faced in trying to manage their diabetes and overall health.

Consequently, this researcher embarked on a second analysis, the basis of this dissertation, using the findings of the first study as sensitizing concepts. In essence, the results of the first analysis became the sensitizing concepts (i.e. the research questions) for the second analysis: What is the full scope and import of the barriers African

American adults with diabetes face in their efforts to manage their health, specifically diabetes? Secondly, what measures do they take, what “work arounds” do they employ, in their efforts manage their health, diabetes specifically?

Theoretical Framework

Although social scientists employ several theories to conceptualize and conduct their research, their philosophical approaches can generally be classified into two orienting frameworks: positivist and constructivist/interpretivist (Marvasti, 2004;

Charmaz, 2003; Cohen & Crabtree, 2006; Lincoln & Guba, 2000). Arguably, millions of words have been written about these two orientations and their various permutations, but basically, the two approaches can be differentiated by their assumptions, methodology, and criteria for ‘good” research (Cohen & Crabtree, 2006).

A positivist methodology assumes the existence of an objective reality, generally relies on experimental or statistically manipulative methods, involves hypothesis

generation and testing, and is judged “good” or “poor” based on validity, reliability and generalizability (Cohen & Crabtree, 2008). In contrast, a constructivist/interpretivist approach assumes that reality is relative and socially constructed, relies heavily on naturalistic inquiry (“study of the social world through observation of individuals or groups in their natural setting” [Reynolds, 1980, p. 77]); uses qualitative methods (e.g., ethnography, grounded theory, et al.); and recognizes that the researcher cannot be separated from that which is researched. It should be noted that the literature is rife with discussions of various theoretical approaches, their permutations, and adaptations and that simplifying the discussion here using the above positivist vs. constructivist typology does not capture the full range of theoretical frameworks from which to study and understand social processes (Denzin & Lincoln, 2011).

Importantly, several theorists and scholars argue that the criteria used to evaluate the quality of constructivist research should be different from that used for research in the positivist tradition, and they offer their own idiosyncratic evaluative criteria along with extensive rationales (Charmaz, 2006; Cohen & Crabtree, 2006; Angen,

2000; Silverman, 2006; Seale, 1999). Research quality issues and evaluative criteria applied in this study will be discussed in greater detail below. All aspects of this dissertation are based on the constructivist paradigm.

Qualitative Research Approach

Based on the constructivist framework of this research and the nature of the research questions, the author followed the requisites of a qualitative research approach. That is, the objective was to focus on aspects of behaviors and feelings, not

data quantification or reduction, and to explore, in depth, the processes by which

patients and their physicians attempt to manage diabetes and the patient’s overall health. That is, this research asks “why,” “what,” and “how,” rather than “how many” or

“what is the statistical association” between variables. This researcher’s aim, rather than “counting beans,” was to provide “information as to which beans are worth counting” (Anderson, 2006, p. 3).

Consequently, as will be discussed in greater detail below, the sample was non- random and of small size relative to quantitative studies, and the data were collected in the respondents’ “natural setting,” in a primary care clinic and in their homes. The researchers “directly observed” the medical encounter (doctor/patient visit), and key informant interviews were conducted with both patients and physicians. In contrast to participant observation, in “direct observation” the researcher, while physically present, strives to be as unobtrusive as possible, does not take part in the process, and her appearance or role is usually episodic and short term (Trochim, 2006). Finally, rather than “pre-coded surveys or other formulaic techniques,” the researcher in this case was the “instrument of data collection” (Marvasti 2004, p. 12).

Strategy of Inquiry

Several methodologists suggest that qualitative studies need not conform to one, specific research approach, but rather that it is desirable and advantageous for a researcher to “mix and match” methods to accommodate the goals and requirements of a study (Creswell, 2012; Patton, 1999; Miles & Huberman, 1994). In his extensive oeuvre, Creswell (2012) identifies and differentiates five “qualitative traditions”:

Narrative Research, Phenomenology, Ethnography, Grounded Theory, and Case Study.

According to Creswell’s interpretation, narrative research proposes to capture

the detailed stories and life experiences of one or a few individuals.

Phenomenology is used when the researcher seeks to describe how individuals

‘make meaning” of their lived experiences with regard to a specific shared concept or

phenomenon: “The basic purpose of phenomenology is to reduce individual experiences

with a phenomenon to a description of the universal essence” (Creswell, 2013, p. 76).

In a case study, the researcher is interested in analyzing, in depth, a single case

or a very small number of cases.

In grounded theory the researcher seeks to “build” theory directly from the data.

In ethnography the researcher directly observes the behavior of a social group

and describes, analyzes, and interprets her/his observations.

As described in detail below, both ethnography and grounded theory (GT)

informed the design and conduct of this study. An ethnographic approach was taken

because the research focus was “the behavior of a social group” (type 2 patients at the

clinic). Grounded theory was employed to build/augment theory exploring the social determinants of diabetes self-management from the “ground up”; i.e., based on the experiences of the “social group” in their own words.

Although numerous definitions and interpretations of both strategies exist in the literature, for purposes of this research the terms are defined as follow. Ethnography usually involves a researcher’s directly observing the behavior of a social group and producing a written description, analysis, and interpretation of those observations

(Scott & Marshall, 2009; Creswell, 2013; Atkinson & Hammersley, 1994). Ethnography is

“…the work of describing culture” (Spradley, 1979) using a “process of learning about

people by learning from them” (Roper & Shapira, 2000). Grounded theory, a strategy pioneered by Glaser and Strauss (1967), “focuses on creating conceptual frameworks or theories through building inductive analysis from the data” (Charmaz, 2006; p.186) in contrast to “abstract theory” that is developed by deducing hypotheses which are then tested against observations (Scott & Marshall, 2009). Both ethnography and grounded theory use naturalistic methods (i.e., interviewing/observing people “where they are”) to collect data; and in this case, both direct observation and personal, in-depth interviews with key informants (members of the “social group” under study, i.e., patients at a primary care, out-patient clinic) were used.

Ethnographic research is appropriate when the researcher seeks to understand and explore complex processes and meanings in peoples’ lives. It typically investigates a small number of cases, works with unstructured (uncoded) data initially, and produces verbal descriptions and explanations rather than statistical analysis (Atkinson &

Hammersley, 1994).

Specifically, the methodology applied in this case falls more correctly under the rubric of “focused” rather than “conventional” ethnography. According to Knoblauch’s

(2005) interpretation, conventional ethnography has historically been associated with long-term field studies common in anthropology that explore life experiences of cultures other than one’s own and that involve the observer’s extended and extensive participation in that culture. In focused ethnology the researcher explores aspects of

her/his own culture, and the phenomenon under study is not necessarily new or

aberrant. Atkinson & Hammersley (1994) attribute the theoretical and methodological development of ethnography to two phenomena: The shift toward collecting data firsthand in the 19th century by social science scholars and their recognition that

“understanding” social processes applies to one’s own culture as well as that of others

(Cohen & Crabtree, 2006).

In contrast to conventional ethnography, focused ethnography is characterized

by short-term, sporadic visits in the field resulting in a large amount of data collected in

a relatively short period of time. Consequently, the researcher is likely to use computer-

assisted qualitative data analysis software to manage and analyze large data sets

(Higginbottom, Pillay, & Boadu, 2013). Focused ethnography is also characterized by the extensive use of recording equipment, rather than taking manual field notes, so that the approach offers the advantage of transparency; i.e., other researchers may corroborate results and interpretations. While conventional ethnographers assume a participant as well as an observer role, the role of practitioners of focused ethnography is one of observer only. Finally, in focused ethnography sampling is typically purposive and convenient, the numbers of participants are not usually predetermined, and saturation

(discussed later) often dictates sample size (Higginbottom, Pillay, & Boadu, 2013;

Knoblauch, 2005; Marvasti, 2004; Denzin & Lincoln, 2011).

Higginbottom, Pillay, & Boadu (2013, p.1) posit that focused ethnography is particularly “suitable,” “efficient,” and “pragmatic” for the conduct of healthcare research because it can capture data on a specific topic of importance to individual

clinicians and provide input to improve care and care processes. The findings associated

with focused ethnography in the health care field are “anticipated to have meaningful

and useful application in community or hospital healthcare practice” (Higginbottom,

Pillay, & Boadu, 2013; Knoblauch, 2005). Focused ethnography, they contend, is valuable for research on healthcare issues because it links macro and micro processes; i.e., it addresses the everyday behaviors and interactions of individuals in the context of the wider social/cultural environment.

The focused ethnography approach was well suited to accomplish the goal of this research: Exploring how patients with diabetes self-manage their illness in the

context of social environmental barriers. The methodology is practical and efficient from

a time and budget perspective, it focuses on participants with specific knowledge about

the subject of interest, it typically involves a limited number of participants, and it is

problem-focused and context specific (Higginbottom, Pillay, & Boadu, 2013; Knoblauch,

2005; Muecke, 1994). Figure 9 below illustrates the characteristics of focused

ethnographies as envisioned by Muecke (1994) and (Higginbottom et al., 2013).

Figure 9. Characteristics of focused ethnographies (Muecke, 1994; Higginbottom et al., 2013, p 3.)

Since first articulated by Glaser and Strauss in their 1967 book, The Discovery of

Grounded Theory, grounded theory as a study design and analytic tool has been adopted and/or adapted by several scholars over the ensuing decades, all of whom have postulated, basically, variations on this theme: Constructing theory that is “grounded” in data that are systematically gathered and analyzed (for example, see Birks & Mills, 2011;

Goldkuhl & Cronholm, 2010; Charmaz, 2006, 1995; Clarke, 2005; Strauss & Corbin, 1990;

Glaser, 1978; and Glaser & Strauss, 1967).

Despite this common base, as Marvasti (1964, p. 85) observed, “…there is more than one way of doing grounded theory analysis.” The “discovery” of GT, occurring at a time when positivism was considered the only legitimate path to authentic knowledge, was in a sense revolutionary because Glaser and Strauss argued that theory can be constructed “ground up” from the data rather than deducing testable hypotheses from

existing theories (Charmaz, 2006). Eventually, the two founding theorists themselves

parted ways in their approach to GT: While Glaser retained the strong emphases of the

original articulation of GT (emergence, induction, comparative methods), Strauss placed

greater emphasis on technical procedures over comparative methods and on

verification over emergence/induction (Charmaz, 2006; Walker & Myrick, 2006; Heath &

Cowley, 2004; Glaser, 1992; Strauss & Corbin, 1990).

While recognizing the nuanced differences in the theoretical underpinnings and the applications of grounded theory offered by various methodologists, this researcher based the design and analytic strategy of the present study on the Constructivist

Grounded Theory (CGT) method as articulated by Charmaz (2006, 1995, 1990). Charmaz defines and differentiates CGT from what she considers the Objectivist Grounded

Theory (OGT) approach of both Glaser (1992) and Strauss and Corbin (1990):

While CGT places “priority on the phenomena of study” (Charmaz, 2006, p. 130) and considers both data and their analyses as social constructions (Charmaz, 2006;

Marvasti, 2004), the respective positivist approach of OGT scholars “attends to data as real” and “does not attend to the processes of their production” (Charmaz, 2006, p.

131).

Whereas OGT tends to adhere strictly to pre-established coding techniques and methods, the CGT method is “sensitive to how contextual factors influence the research process” (Marvasti, 2004, p. 86).

Importantly, while OGT stresses that a researcher must and can remain objective and able to separate her/himself from the “facts” that emerge, CGT recognizes that

interpretations of both the researcher and respondents are inextricably bound with the

findings of the research, a relationship that should be acknowledged and addressed

when analyzing results. Consequently, a constructivist approach fosters a researcher’s

reflexivity in grappling with how her/his presuppositions affect data analysis (Charmaz,

2006).

A related aspect of Charmaz’s (2006) conceptualization of CGT is relevant to this

study’s research questions. She sees the constructivist approach as offering a method to

discover “how, when, and to what extent the studied experience is embedded in larger

and often, hidden positions, networks, situations, and relationships” and in doing so

makes visible “hierarchies of power, communication, and opportunity that maintain

differences and inequality,” a major theme of this research.

Table 2 below provides a visual representation of the differences between constructivist GT and objectivist GT as theorized by Charmaz (2012, 2008, 2006).

Although making several distinctions between the two GT approaches, Charmaz (2008, p. 402) adds that “in practice … grounded theory inquiry ranges between objectivist and constructionist approaches and has elements of both.”

Table 2. Characteristics of constructivist vis à vis objectivist grounded theory as explicated by Charmaz (2012, 2008, 2006)

Distinguishing Constructivist Grounded Characteristics Objectivist Grounded Theory Theory (Charmaz, 2006) Resides in positivist tradition Resides in interpretive tradition Conception Attends to data as real; Reality is multiple, processual, of/approach to “real assumes data represent and constructed; it emerges world” objective facts about a and does not exist in some knowable world; truths exist external, readily-discoverable to be “discovered” form

Distinguishing Constructivist Grounded Characteristics Objectivist Grounded Theory Theory (Charmaz, 2006) Role of Researcher Observer, recorder, analyst of Functions as participant and the data; stands apart from observer; data collected are research co-constructed by researchers and participants Goal Seek generalizations that Assumes generalizations are provide explanations and partial, conditional, and predictions; offers “verified situated in time and space; knowledge” offers “plausible accounts” Method for Analysis Applies systematic set of Assumes methods open to methods; offers explicit refinement; emphasizes guidelines; adheres strictly to phenomena of study and pre-established coding interpretation rather than techniques and methods coding techniques, procedures, and guidelines Nature of Data Data yield categories; Feelings and interpretations of categories “privileged” over participants are privileged; experiences more intuitive and impressionistic Trustworthiness of Can achieve reliability and Generates hypotheses and Findings validity concepts that other researchers can apply to similar research problems

Study Population

Study participants were selected from the patient panels of four primary care physicians at a neighborhood clinic of a safety net hospital system in an East North

Central State. A “patient panel” consists of the total number of patients under one physician’s care during “the last 18 (or 12) months” (Murray, Davies, & Boushon, 2007).

A “safety net” hospital or health care system provides a “significant level of care to low- income, uninsured, and vulnerable populations.” While it may be either publicly or privately owned (typically non-profit), a safety-net hospital is committed to serving economically disadvantaged individuals (National Association of Public Hospitals).

The clinic was selected for two specific reasons: First, one of the initial co-

researchers was a primary care physician at the site and as such had immediate and

complete access to the population of interest, the physicians as well as the patients.

Secondly, the Principal Investigator (Bolen et al., 2015) determined that the clinic’s

diabetes patients overall registered “good” clinical outcome scores (A1c, blood pressure, cholesterol, weight, and smoking status) and “good” care process scores (A1c test, eye exam, kidney management, pneumonia vaccination) relative to other primary clinics in the same healthcare system during the 2008 – 2009 reporting period. One of the goals of the study was to explore diabetes care in the context of an exemplar (“a person or thing serving as a typical example or excellent model”) primary care clinic serving a socioeconomically disadvantaged population; this particular clinic served these requirements as well (Oxford Dictionary On Line).

Over a six-month period (June through October 2009), the two co-researchers

selected a total of 25 individuals with diabetes from the patient panels (lists) of each of

four primary care physicians. The doctors were all family practice physicians, White, and

married; 3 were female, 1 male. The sampling frame for the study consisted of the total

number of patients with diabetes on the patient panels of the four participating

physicians who had made office appointments on the specific days the researchers were

in the Clinic. As if often the case in medical research, for time and budget reasons

convenience and purposive sampling strategies were used to assemble a list of patients

who would be asked to participate in the study (Trochim, 2006). An additional criterion

for inclusion was that the patient had scheduled a routine, follow-up, rather than a new patient or emergency, appointment.

The sample was built on a day-to-day basis. That is, data collection days were scheduled in advance at the convenience of the physicians participating in the study. On any given day in the field, the researchers surveyed the appointments for the day for each of the participating clinicians. They then attempted to “balance” the sample with regard to age and sex (i.e., purposive sampling). Again, each day’s sampling frame was limited only to patients being seen that day. Several factors constrained both the design and the conduct of the study, particularly data collection decisions and procedures: time, budgetary, the PI’s schedule, the participating physicians’ schedules, and clinic activities on any given day.

Five individuals declined to participate in the study. Five others were eventually excluded either because, upon further investigation, they did not have diagnosed diabetes or because of recording malfunctions during the office visits and/or interviews.

Type-written transcriptions of all audio recordings (office visits and personal interviews) were produced and used for validation and reliability purposes.

All 15 study participants were African American; 11 were female; 4, male. The mean age of the 15 participants was 60, with a range of 45 to 75. The mean length of the medical encounter was 31 minutes, ranging from 18 to 49 minutes; and the mean length of the personal interviews was 78 minutes, ranging from 49 to 138. Table 3 below presents a description of the sample by sex, age, length of medical encounter with physician, and length of personal interview.

Table 3. Characteristics of Sample

Office visit Interview Respondent Sex Age minutes minutes 1 F 70 39 83 2 F 58 18 83 3 F 62 18 82 4 M 75 50 68 5 F 64 18 52 6 F 50 49 50 7 M 58 25 138 8 F 58 20 71 9 F 65 18 82 10 F 70 36 50 11 M 50 46 49 12 F 53 29 93 13 M 52 25 53 14 F 67 39 94 15 F 45 41 127 Mean 60 31 78 Range 45 - 75 18 - 49 49 - 138

As a co-researcher on the project, this author did not have Institutional Review

Board (IRB) approval to access additional demographic and biomedical information for each participant. Additionally, the decision to use study data for a dissertation was made after initial data analysis revealed the prevalence of social contextual issues in the management of diabetes. Consequently, Table 4 below presents information describing the total number of diabetes patients at the clinic research site and serves as a proxy to describe the sample beyond race, age, and sex.

Table 4. Practice site (clinic) total diabetes patient characteristics†

Practice site/clinic diabetes patient characteristics - Reporting period 2008-2009 Region Wide Sample (8 health care Practice/Clinic systems) Number of diabetes 406 25,724 Patients Insurance Type % Medicare 32% 36% % Commercial 27% 43% % Medicaid 16% 9% % Uninsured 26% 12% Race/Ethnicity % White 2% 53% % African 97% 39% American % Hispanic 0% 6% % Other 1% 2% Gender % Male 22% 45% % Female 78% 55% Average Age 55 58 Median Income $33,156 $40,342 % High School 78% 80% Graduates % Medicaid* patients 22% 22% meeting diabetes clinical outcomes standards*** % Medicaid* patients 43% 31% meeting diabetes care process standards**** % Uninsured** 21% 21% patients meeting diabetes clinical outcomes standards*** % Uninsured** 41% 29% patients meeting diabetes care process standards****

† Better Health Greater Cleveland, Community Health Checkup, June 2009; http://betterhealthcleveland.org/Home * 8 practices, total Medicaid patients n = 2263, with at least 50 qualifying Medicaid diabetes patients ** 14 practices, total Uninsured patients n = 3143, with at least 50 qualifying Uninsured diabetes patients *** Percentage of patients meeting at least 4 of 5 clinical outcomes standards (A1c value, blood pressure, LDL cholesterol, body mass index, smoking status) **** Percentage of patients meeting all 4 care process standards (A1c, kidney management, eye examination, pneumonia vaccination)

Data Collection Procedures

Field work consisted of two phases: Direct observation of patient/physician office visits (medical encounters) and follow-up, in-depth, face-to-face personal interviews with each patient. Prior to the beginning of field work the four physicians signed Informed Consent forms for the observation and the audio taping of the medical encounters and for participation in and audio taping of personal interviews. The medical encounter observations and personal interviews were conducted between June and

December of 2009, the scheduling of which were contingent on patient, physician, and researcher availability and convenience. Researchers were in the clinic for 12 days over this time period. This author completed most of these observations, as well as the patient personal interviews, while the co-researcher interviewed the 4 physicians.

Each day in the field the co-researchers selected a number of patients from a physician’s panel according to the specifications outlined above. A random ten-digit identification number was assigned to each physician and to each potential patient participant to maintain confidentiality and provide anonymity throughout the research process. On the selected observation day, the researchers were notified when a selected potential respondent had checked in at the front desk. Each individual was

quietly approached and asked if s/he would be willing to speak in private about participating in a research study. If the patient agreed, s/he was directed to a private office or exam room in the clinic for the recruitment discussion. After the purpose

(“improving quality of care”) and logistics of the study were explained, signed Informed

Consent forms were obtained from those willing to participate. In signing the forms, the

patient agreed to participate in both the encounter and a personal interview. Although

participants were also asked to sign a separate consent form agreeing to the digital recording of the encounter and interview, they were counseled that they could elect to interrupt or stop a recording at any time. Copies of the Informed Consent forms are included in the Appendix. As an “expression of appreciation,” participating patients and clinicians were offered gift certificates to Target, for $15 and $50 respectively.

As observers, the researchers entered the exam room with the physician. After a

few preliminary remarks acknowledging her presence and role, the researcher chose a

seat as far removed from the physician and patient as was possible, given the relatively small area of the exam rooms. As unobtrusively as possible, the researcher took field

notes and tended to the recording device. The intent was to capture not only the

substantive content but also the nonverbal communication cues occurring between the

patient and physician during the encounter (e.g., body position, posture, hand gestures,

facial expressions, tone of voice, et al.). Either immediately after the encounter or in a subsequent telephone call, personal interviews were scheduled with each participant at their location of choice, the clinic or their home, and at their convenience.

Field work proceeded in this manner from June through December 2009, and during this time an attempt was made to complete the personal interviews as soon as possible after the office visit. The personal interviews were conducted within one to two weeks of the medical encounter, with the exception of two in which the respondents had scheduling conflicts because of vacations or care giving responsibilities. The clinic at that time scheduled 20-minute routine follow-up visits; as noted above, the average office visit lasted 31 minutes, and the range was 18 to 49 minutes.

Before field work began, the co-researchers collaborated in designing and pre-

testing two semi-structured questionnaire formats, one for the physicians and one for the patients, in each case providing ample opportunity for open-ended narratives from

the respondents. The questionnaire was more of a discussion guide than a

questionnaire per se, and the instrument was designed in this manner to ensure that

the sensitizing concepts would be addressed (on either an unaided or aided basis). This

method is appropriate when the researcher will have only one opportunity to interview

each respondent and when the interview is preceded by an observation phase of

research (Crabtree, 2006). Although the researcher occasionally jotted notes during the

interview, reliance was placed on the transcribed recordings so that full attention could

be paid to establishing and maintaining a trusting rapport with the respondent.

The 15 personal interviews lasted an average of 78 minutes with a range of 49 to

138 minutes. Copies of these discussion guides are included in the Appendix.

Data Analysis

The study’s 34 audio recordings (15 medical encounters, 15 patient personal

interviews, 4 physician personal interviews) were professionally transcribed into Word

documents and uploaded into NVivo, a Computer Aided Qualitative Data Analysis

Software program (CAQDAS). CAQDAS programs offer efficient tools to manage, code,

retrieve, store, and analyze textual, visual, and audio data. Writers of this software and

scholars using them generally include the caveat that the programs do not “analyze” the

data; they do not “tell you how to analyze the data”; that remains the purview of the

researcher (QSR International 2015, Gibbs, Lewins, & Silver 2005).

NVivo offers several features of an audit trail to provide transparency to the data analysis process (Lincoln & Guba 1985). Some researchers, including this author, believe that using CAQDAS programs to analyze data doubles as an audit trail because they include features that facilitate the capture and storage of text developed in each stage of the process (Bringer, Johnston, & Brackenridge, 2006). The items constituting the audit trail for this study include the raw data (transcriptions of office visits and personal interviews) and the cataloging of the results of several steps in the coding process: initial codes generated for each transcript (labeling text using the words of the participant as closely as possible), themes (combining initial codes into broader, more expansive concepts), and memos (records of analytical thinking and decision making during the analysis). Memo writing was used to record thoughts and reflections occurring as coding proceeded regarding definitions, patterns in the data, or any thinking that might

ultimately inform the analysis and interpretation of results (Saldaña, 2009; Corbin &

Strauss, 2008; Charmaz, 2006).

Analysis of the data began with the reading of each typewritten transcription

accompanied with memo writing to capture processes or themes initially thought to be

significant. Memos were also prepared for each study participant to describe details

about their lives, including demographic, health, work, and family background to the

extent each participant provided such information. The memo writing feature of NVivo was used so that the initial notes would become part of the study record. This process was akin to manually writing notes in the margins but has the benefit of becoming part of the project record in NVivo. All 34 study documents were included for this analysis; only the medical encounter transcripts had been used in the first analysis. In that research phase, coding was decided a priori because the researchers were interested in capturing only a limited amount of specific information as noted earlier.

Saldaña (2009) and Charmaz (2006) both offer extensive, detailed summaries,

definitions, and examples of a variety of coding stages and methods. Both scholars

generally categorize the several methods into two phases [first and second cycle

(Saldaña) and initial and focused (Charmaz)], note that the methods may overlap, and

suggest that many projects may require at least two analytic coding approaches to

adequately capture the depth and breadth of findings. Although various scholars define

“coding” somewhat differently (see, for example, Gläser & Laudel, 2013; Saldaña, 2009),

it is essentially the process of “attaching labels to segments of data that depict what the

segment is about” (Charmaz, 2006, p.3). A summary of their work is beyond the scope of this study, but brief descriptions of the coding stages and strategies are in order.

First cycle, or initial coding, lays the foundation for eventual analysis leading

from discrete pieces of information to concepts and categories. The researcher may

choose to code text on a word-by-word, line-by-line, or segment-by-segment basis or

may code entire paragraphs or pages of text. (Saldaña, 2009; Charmaz, 2006). The intent is to remain open to theoretical possibilities that might not have been considered in crafting the research questions initially (Saldaña, 2009; Charmaz, 2006). Charmaz

(2006) recommends that initial coding “should stick closely to the data” and that the researcher look for “actions in segments of data” rather than immediately assigning the text to preexisting categories (p. 47). Saldaña (2009) profiles 22 first coding strategies, one of which includes Charmaz’s (among others) “initial coding” approach. For each

strategy he provides a source (i.e., the scholars exemplifying the approach), a definition

and description, suggested applications (i.e., descriptions of the types of studies for

which the strategy is well suited), and examples of text and illustrative coding.

In Second Cycle, or focused, coding the objective is to integrate and synthesize

the data into more categorical, abstract levels of description. A researcher’s objective

here, using the “constant comparative” method (Glaser & Strauss, 1967), is to classify, prioritize, integrate, synthesize, and theorize about the initial codes (Saldaña 2009,

Charmaz 2006). Whereas first cycle coding “deconstructs” a mass of textual material into discrete “data points,” second cycle coding reconstructs the data in new ways that reflect the emergence of conceptually similar categories and themes. Saldaña offers a

colorful analogy to explain the distinction between first and second cycle coding. He

likens the steps involved in assembling a table to the coding process: The first step (first

cycle coding), before actual “construction” (second cycle coding) of the table, involves both taking an “inventory” to be sure all needed parts (e.g., bolts, table legs, bolts, etc.) are there and “arranging the parts appropriately on the floor before assembling” (p.

150). Figure 9 below illustrates the process.

Figure 10. Codes-to-theory model for qualitative inquiry (Saldaña, 2009, p. 12)

There is no one, “right,” prescribed way to code text. Coding decisions depend on several factors (e.g. ontological and epistemological considerations, the research questions, the types of questions asked, the types of responses received, and so forth).

Each author and each study present with different coding strategy possibilities (Saldaña,

2009; Charmaz, 2006). Moreover, the various strategies overlap and may be combined

in a “mix and match” fashion as a form of “eclectic coding” (Saldaña, 2009, p. 150.) In

the end, “all coding is a judgement call” since we bring “our subjectivities, our personalities, our predispositions, and our quirks” to the process (Sipe & Ghiso, 2004,

pp. 482-3).

In the first step each document (both office visit and interview transcriptions)

was coded using Charmaz’s first cycle “initial coding” approach. The intent was to

remain as close as possible to the exact wording used by the research participants. Each

document was coded line by line or phrase by phrase, as suggested by Charmaz. This

was done not only to establish transparency of process (i.e. provide evidence of research rigor) and also because this researcher has discovered through extensive past

qualitative coding experience, that collapsing codes into categories prematurely can

prove ultimately inefficient and may limit new ways of thinking about the data.

Additionally, one of the objectives throughout the conduct of this research,

reflected by the research questions themselves, was to honor the contributions of the

respondents by reporting their experiences in their own words before integrating and

synthesizing the data.

Finally, close, line-by-line coding facilitates a researcher’s refraining from imputing personal experiences, motives, and expectations to the respondents and the collected data (Charmaz 2006). These initial codes were understood to be “tentative” and “provisional” (Charmaz, 2006, p. 81) and subject to subsequent rearrangement, combination, or elimination in second cycle coding stages.

In this initial analytic phase, to the extent possible, a “process coding” approach

was used. That is, while examining the text on a word-by-word, phrase-by-phrase basis,

an attempt was made to code instances of “action” (cognitive as well as behavioral) on

the part of the respondents (Charmaz, 2006; Glaser, 1978). Throughout her extensive oeuvre elucidating the Constructivist Grounded Theory (CGT) approach to qualitative

data analysis, Charmaz (2008, 2006, 2005) urges researchers to code for social and

social psychological processes rather than for topics. She recommends that codes and

their definitions emphasize actions and use gerunds (a noun formed from a verb

describing an action, state or process) in their construction.

In addition to “preserving action” and “staying close to the data,” Charmaz

(2006) also suggests that in the first coding phase a researcher should keep coding

“simple and precise” and “move quickly through the data” (p. 49). “Simultaneous

coding” was also applied to all steps in the coding process. That is, as appropriate, the

same textual passage was included in more than one code (often several) (Saldaña,

2009). Table 5 illustrates initial coding for excerpt of text from this study.

Table 5. Initial, process coding example

The doc for me is the knowledge person that knows, Believing doctor is okay. My responsibility is to be active. You’ve got to “knowledge person” be active in your own health care. You’ve got to be proactive. You’ve got to act, but if there’s something that’s bothering you, you’ve got to ask the doctor, Being responsible for my own then the doctor makes a recommendation on what he health or she thinks you should do, and then like I say, then you know. Then you go through the process of accepting. Believing my job is to be active and proactive Yeah, and then you go to the acceptance and then you do it. So with this diabetes, it’s pretty much on you, Accepting is a process because if you don’t eat right and you don’t take your

medicine, the doctor can’t be there 24-7 and it’s a 24- Seeing doctor as person who 7 disease. I mean it’s always with you. But she can can offer suggestions and give you some insight if you have some aches or some resources pains or what’s related and stuff, and that type thing, and as far as your vision and all that kind of stuff. You Eating right, taking start to ask questions like that, and then she says ‘Well medication let me send you to the Optometrist and see if there’s anything in there,’ and that’s what she did. So that’s Believing diabetes is 24/7 what we’re going to do. disease

“Doing” comes after acceptance

Partnering with doctor to manage health In the second coding step [second cycle (Saldaña, 2009) or focused (Charmaz

2006)], the initial codes were prioritized, organized, integrated, and synthesized into broader and more abstract categories, themes, and concepts (Saldaña 2009; Charmaz,

2006). The structure of these thematic coding categories was based on the two research

questions, Cockerham’s Health Lifestyle Model, and the four social ecological models

discussed in Chapter 2 (Walker et al., 2014ab; Solar & Irwin, 2010; Brown et al., 2004;

McLeroy, Bibeau, Steckler, & Glanz, 1988).

These models were discussed at length and in detail in Chapter 2 and were

“theoretically matched” (Goldkuhl & Cronholm, 2010) with the data generated by this research. The Brown and Walker models were particularly useful in coding text pertaining to the four instrumental diabetes self-management behaviors: those relating to diet, exercise, medication management, and blood sugar monitoring. Playing a central role in the coding structure and eventual interpretation and analysis of the results were the five levels of social environmental influences suggested by McLeroy et al. (1988): intrapersonal, interpersonal, institutional, community, and public

policy/society. This model was the foundation for the interpretations discussed in

Chapters Five and Six.

Throughout all phases of coding, Glaser and Strauss’s (1967) “constant comparative method” was applied. At each coding/analytic step, comparisons were made between the selected text and existing categories to determine where it

“belonged” – in an existing category or in a new or higher order category. Coding development was, consequently, a process of “continuous meaning making” and of

“progressive focusing” (Srivastava & Hopwood, 2009, p. 77).

Moreover, as is true for grounded theory investigations generally, all phases of this research, from development of research questions through interpretation of results, were emergent and iterative. An emergent method is “inductive, indeterminate, and open-ended,” and “it begins with the empirical world and builds an inductive understanding of it as events unfold and knowledge accrues” (Charmaz, 2008, p. 155).

Although an iterative approach in qualitative research refers to a “systematic, repetitive, and recursive process” (Bassett 2010, p. 503), it is not, Srivastava and Hopwood (2009) emphasize, a “mechanical task” but rather a “reflexive process” (p. 77) that involves ongoing examinations of the data and the codes to connect them with conceptual and theoretical insights (Srivastava & Hopwood, 2009).

In addition to process coding as recommended by Charmaz, the text was also coded and categories were constructed to reflect several of Saldaña’s (2009) coding strategies. These included looking for instances of: “observable behavior” (e.g., taking medication, having an A1c done, getting a pneumonia shot, et al.); “conceptual

behavior” (e.g., did the participant describe self-managing diabetes as a “struggle” or as

a “negotiating process” or as having to “adapt” lifestyles changes?); and “types of

behavior” (e.g., did the participant portray her/his self-management of diabetes as

“strategic”? as “random”? as “routine”? as “automatic”?). Respondents use of “if,”

“when,” “because,” “then,” and “so” were noted and coded to capture instances of

sequences or processes in action. Finally, using what Saldaña (2009, p. 94) terms

“versus coding,” this researcher looked for instances of asymmetrical power relationships among the various stakeholders and components of the healthcare system. For example, were there instances of conflict between the physician and the patient? Between the physician and the clinic where s/he practiced? Between the physician and the larger medical system? Between the patient and social policy (e.g. insurance, employment, tax laws)? Between the physician and the diabetes treatment guidelines as promulgated by the American Diabetes Association? And so forth.

Role of Researcher

All aspects of this research, from the crafting of research questions to the analysis and interpretation of the data, were informed by three theoretical frameworks that reflect the axiological, ontological, and epistemological assumptions made by this researcher: Marxist/Conflict Theory, the Constructivist/Interpretive paradigm, and

Constructivist Grounded Theory (CGT) as envisioned by Charmaz (2006).

All three of these perspectives are discussed in earlier sections of this paper; but briefly, a Marxist view assumes that individuals and groups (social classes) in a society

possess unequal amounts of material and non-material resources and that those

possessing power and wealth exert influence over and exploit those without.

The interpretive sociological paradigm is most often discussed in relationship to

its supposed opposite, positivism. Generally, positivism assumes that society has

objective social facts which are knowable and measurable, that the goal of scientific

study is to explain and predict, and that what “we know” is independent from the

context in which “we know” it. In contrast, an interpretive approach prioritizes

understanding and meaning over measurement and prediction, considers that all

meaning is constructed by both the researcher and the research participants, and that

what we know and how we know is context dependent.

In the third perspective, a contemporary revision of Glaser’s (1967) “classic grounded theory,” Charmaz’s Constructivist GT assumes that both data and analyses are social constructions, acknowledges multiple realities and standpoints on the part of both the researcher and the participants, and takes a reflexive stance toward all aspects of the research process. Charmaz (2006, p. 188) captures the essence of reflexivity:

…the researcher’s scrutiny of his or her own research experience, decisions, and interpretations in ways that bring the researcher into the process and allow the reader to assess how and to what extent the researcher’s interests, positions, and assumptions influenced inquiry. A reflexive stand informs how the researcher conducts his or her research, relates to the research participants, and represents them in written reports.

Taking a reflexive stand by definition requires that an author make explicit the research philosophies - axiological, epistemological, and ontological - guiding the conduct of a research study. In this report, the author’s theoretical stances have been discussed repeatedly over several chapters, given that theory guided its every step, from

research question formulation to analysis. The paragraphs below discuss how that

theory influenced my approach to this work; and, in this case, I mindfully use the first

person “I.”

I privilege the voices of the research participants and recognize that they (as

does this author) actively construct reality and meaning on a day-to-day, often moment-

by-moment basis. I recognize that meaning-making is dependent on myriad contextual

factors involving an individual’s physical, psychological, social, economic, political, legal,

cultural, etc. “location” at any one particular time and/or place.

Returning to Bourdieu (1986), I consider that life in the United States is replete

with grotesque disparities of economic capital (money, property, material goods);

cultural capital (class standing, access to knowledge, access to the arts, communication

skills, physical appearance, social skills, et al.); social capital (networks of social

relationships and connections, from the “old boy networks” and “legacy admissions” of

the upper class strata to memberships in fraternal lodges and bowling leagues of the

working class); and symbolic capital (prestige and status). Because of its obvious relevance to the project at hand, I add here one additional form of capital- “cultural health capital” - as explicated by Shim (2010, p. 1)

I propose … the new concept of ‘cultural health capital,’ based on cultural capital theories, to help account for how patient-provider interactions unfold in ways that may generate disparities in health care. I define cultural health capital as the repertoire of cultural skills, verbal and nonverbal competencies, attitudes and behaviors, and interactional styles, cultivated by patients and clinicians alike, that, when deployed, may result in more optimal health care relationship.

Finally, I approached this as well as I have other research endeavors with the belief that a strict, “purist” positivism is but one way of “knowing the world” and that

legitimate “knowing” originates from sources other than or in addition to “experts in the

field” and institutionally acceptable and sanctioned discourse and methodologies

(Foucault, 1971).

These assumptions and positions were birthed from a lifetime of experiences: work, academic, professional, and personal. Looking back, I now appreciate even more the power of early family life (Lareau, 2003) in influencing an individual’s intellectual and moral development. It occurs to me now that I made nascent steps into adulthood and the development of a value system on those occasions when, instead of “playing hide and seek with the other kids” outside, I was hunkered down on the kitchen floor rapturously listening to parents, aunts, and uncles discuss, animatedly at times, the legacy of FDR and the “New Deal,” the legitimacy of labor unions, and their own reminiscences about the Depression and World War II.

I came to this project after decades of marketing and advertising as well as social science research. Over the years I have been responsible for (or assisted in) the conduct of hundreds of research studies (qualitative and quantitative), from proposal development through data collection, analysis, and presentation of results. In the qualitative realm, during my career I have conducted dozens of focus groups and hundreds of personal interviews with individuals from all walks of life: elementary school students, “consumers” of myriad products and services, civil rights leaders, police officers, physicians, nurses, engineers, architects, business executives, boards of directors of nonprofit organizations, elected officials, civic leaders, older cancer survivors, and medical patients, among others. This extensive “people” and listening

experience served me well in conducting the interviews and obtaining Informed Consent

for this project. I feel honored that the participants shared their personal stories with

me and welcomed me into the exam room with them and their physician.

Study Quality

The positivist, quantitative tradition demands both validity (internal and

external) and reliability as measures of research trustworthiness. However, growing

numbers of qualitative researchers reject the notion that traditional measures of

quantitative research quality (i.e., random sampling, reliability, validity, replicability)

should be applied to qualitative research (Golafshani, 2003; Whittemore, Chase, &

Mandle, 2001; Lincoln & Guba, 1985). In their discussion of and proposals for judging the quality and rigor of qualitative research, Cohen and Crabtree (2006) acknowledge the abundance of suggested criteria and advise researchers to consider two issues initially: the research paradigm (positivist vs. interpretive) and the standards of excellence of the particular qualitative tradition used (i.e., grounded theory, case study, phenomenology, discourse analysis, etc.). They present their own criteria and refer to the work of other scholars who have contributed to the dialogue for judging standards for, specifically, qualitative health research.

Several strategies were used to establish quality and rigor in this research effort and were developed using the suggestions of a number of methodological scholars

(Cohen & Crabtree, 2006; Lincoln & Guba, 1985; Mays & Pope, 2000; Seale, 1999). Rigor has been defined as “The thoroughness, accuracy, confirmability, and ethical soundness of all aspects of a study’s design” (Andrew & Halcomb, 2009, p. xvi). A similar typology is

offered by Lincoln and Guba (1985) who suggest that four overriding criteria be used to

assess the merit of qualitative research: credibility, transferability, dependability, and

confirmability. The strategies outlined below speak to these various criteria.

First, “Low-Inference Descriptors” (i.e., verbatim comments) were used

extensively in the analysis (NVivo initial coding) and in the presentation of study results.

Low-Inference Descriptors seek “to record observations in terms that are as concrete as

possible, including verbatim accounts of what people say, for example, rather than

researchers' reconstructions of the general sense of what a person said” (Seale, 1999, p.

148). This was an attempt to prevent the researcher’s drawing conclusions and making

connections in the data too early in the process. As noted earlier, this approach not

only enhances study credibility but also mirrors the primary purpose of the research: To

present participants’ experiences from their specific perspectives, using their words and

expressions.

Several types of triangulation, as elaborated by Denzin (1978) and Patton (1999), were applied in the conduct of this research: Method, Source, Theory, and Analyst. In method triangulation, the researcher examines data generated from more than one method; in source triangulation, the researcher examines the consistency of data gathered with the same method; in analyst triangulation, the researcher considers the points of view of multiple observers or analysts; and in theory triangulation, the researcher applies multiple theoretical perspectives to examine and interpret the data

(Cohen & Crabtree, 2006).

In the present study, method triangulation was achieved by using both personal

interviews and non-participant observation to gather data for analysis. These methods explored complimentary aspects of the phenomenon under study - how patients and their physicians manage diabetes.

Source triangulation was attained by conducting the observations and interviews at different points in time, obtaining the points of view of the physicians as well as the participants, and gathering information in both “public” (the medical visits) and in

“private” (personal interviews) settings.

Theoretical triangulation was achieved by applying several theories and points of view to inform all aspects of this research, from crafting the research questions and designing the study through analysis and presentation of results: Marxist/Conflict

Theory, the work of Bourdieu, Weber, and Giddens, Cockerham’s Lifestyle Model, several “social ecological” models of health as explicated by various health care stakeholders, grounded theory as conceptualized by Charmaz, and coding strategies outlined by Saldaña.

Finally, research quality efforts were enhanced using analyst triangulation

(Cohen & Crabtree, 2006), referred to as “peer debriefing” by Creswell and Miller

(2000). In analyst triangulation multiple analysts are involved in the research process. As discussed earlier, the data for this dissertation were obtained under the auspices of the

“Essence of Primary Care” project funded by a National Institutes of Health KL2 Career

Development Grant awarded to Dr. S. Bolen. Four individuals were involved in the initial

97 project: Dr. Bolen, Dr. Kurt Stange (Clinician, Researcher), Dr. Adam Perzynski

(Sociologist), and this author.

For this dissertation this author had sole responsibility for all coding and analysis decisions; and the 15 personal interviews as well as the 15 office visit transcripts were used for the analysis. Analyst triangulation was achieved by virtue of including both Dr.

Stange and Dr. Bolen on the Dissertation Committee, and their input informed the analysis and interpretation of the results as did feedback from Dr. Gran and Dr.

Deimling.

Dr. Bolen and this author collaborated on all phases of this research project including the preparation of research instruments (observation and interview guides, environmental check lists, various study data management forms, et al.); determining field work procedures and logistics; obtaining Informed Consent from participants; observing patient provider medical encounters; conducting personal interviews with patients; and managing, coding, and analyzing the medical encounter observations using

NVivo.

Although both researchers participated in data collection, this author conducted most of the medical encounter observations and personal interviews with patients. Dr.

Bolen conducted the personal interviews with the four participating physicians.

Potential biases were discussed prior to conducting the field work and throughout the analysis process. During the observation phase of the study, it was noted that Dr. Bolen was more likely than this researcher to code medical issues and; conversely, that this author was more likely to code social environmental issues. The co-

researchers collaborated in integrating and synthesizing the two perspectives for the

initial analysis (Bolen et al., 2015).

Additionally, issues of personal bias are addressed by making transparent the theoretical underpinnings of every step taken in this research and by acknowledging this author’s axiological, epistemological, and ontological worldview as discussed in the Role of the Researcher section above.

Every effort was made to ensure transparency of process throughout each phase of this research. Transparency not only enhances the quality of research but also provides the information necessary should another researcher wish to revisit the analysis. Transparency of process has been achieved in several ways: extensive use of several theoretical frameworks, use of audio recording all field work sessions

(observations and personal interviews), typewritten transcripts of observations and recordings, the use of NVivo coding, an extensive collection of Research Memos that discuss strategies and rationales used throughout the analysis process (e.g. general impressions, coding decisions, reflexive notes, and motivations); and the inclusion of all study instruments and forms.

Finally, “thick description” (Lincoln & Guba 1985) was used in the presentation of study results. That is, analysis remained as true as possible to the words of the participants themselves and extensive verbatim quotations provide evidence for the interpretations and conclusions reached. The intent was to provide sufficient detail so that with methodological revisions appropriate to the time/place under study, the

conclusions drawn may be transferable to other situations, people, and time periods

(Cohen & Crabtree, 2006).

Ethical Considerations

This research, from inception of the field work through data analysis, at all times followed strict ethical guidelines. A random ten-digit number was assigned to each participant, and only one document linked names and numbers. That Master File was saved on the medical institution’s secure data network and was accessible only to the co-researchers. All study materials – oral recordings, scanned copies of written field notes, signed Informed Consent forms, et al. – were also stored on the secure network drive as well. Written documents, field notes, etc. were shredded. Participants throughout the process were told that they could withdraw from the study at any time and that they could request that the audio recorder be turned off. They were also assured that they could, at any time, choose not to answer a particular question.

This research was supported by a grant to Dr. Bolen from the National Cancer

Institute (R25TCA111898) and by grant number RR KL204990 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH) and NIH Roadmap for Medical Research.

Study Limitations/Sample Size Considerations

Any research study has limitations, if for no other reason than they are human endeavors; and they are often funded by “outside,” third-party stakeholders such as the

National Institutes of Health, private foundations, or commercial interests. As such, time and budget considerations often prevail in dictating study parameters. The decision to

100 use “The Essence of Primary Care” study as a basis for this dissertation necessarily limited my ability to make methodological decisions ex post facto. Decisions regarding the field work clinic site, sample size, sample selection criteria, sample descriptors, and timing of interviews and observational sessions were made by Dr. Bolen and approved by the funding agencies. Consequently, I was limited in my ability to make methodological decisions, including the gathering of more detailed demographic and medical status information.

It is typical for qualitative researchers to state in the “Limitations Section” of a paper that the results of a study are not projectable or generalizable to a wider population, that being defined ipso facto as a “limitation.” In the present study, while acknowledging the sample to be small relative to that of a quantitative study, it is argued not only that the results are theoretically transferable to similarly positioned patients (informed, determined, resilient), physicians (culturally competent), and health care systems (i.e., safety-net), but also that a small sample size is an internal characteristic of qualitative research, not a limitation. Transferability essentially refers to other situations and contexts where results are most likely to be relevant and applicable.

Because a social phenomenon cannot be exhaustively and definitively measured or statistically projectable to a population does not negate its relevance to the lived lives of patients, their families, and their physicians. The present study was conducted assuming that the knowledge generated by qualitative research is significant in its own

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right, and its intent and interpretation honors the lived experiences of the research

participants (Myers, 2000).

On the other hand, those in a position to judge the quality of a dissertation (i.e.,

primarily committee members) may legitimately question the appropriateness of the

sample size. It is instructive, in this regard, to consult prominent qualitative research

methodologists for recommendations regarding sample size.

Qualitative researchers extensively use “theoretical saturation” as a standard by

which to determine sample sizes (see Guest, Bunce, & Johnson, 2006; Morse, 2004;

Sandelowski, 1995;). “Theoretical saturation” refers to the point in the research process at which no new information or themes emerge from the data (Glaser & Strauss, 1967).

At the same time, “there are no published guidelines or tests of adequacy for estimating the sample size required to reach saturation” (Morse, 1994, p. 147). Baker and Edwards

(2012) asked 14 “expert voices” in qualitative research (participants included Howard S.

Becker, Kathy Charmaz, Norman Denzin, and Charles C. Ragin) for an answer to the perennial question, “how many qualitative interviews is enough?” The consensus among the group was: “It depends ….” (p. 42).

For the work herein, the most helpful, practical discussion of and recommendations for sample size in qualitative research was provided by the empirical work of Guest, Bunce, and Johnson (2006) who operationalized “theoretical saturation” by analyzing code book development in their study involving 60 in-depth interviews with

women in two West African countries. Basically, they determined saturation to be that

point in the data collection and analysis process where new information produces little

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or no change to the codebook. They systematically documented the progression of

theme identification (i.e., the degree of data saturation) after each set of six interviews

for a total of ten analysis rounds. Although they caution that sample size determination

ultimately remains subjective to a degree, they nonetheless conclude that “…saturation occurred within the first twelve interviews, although basic elements for metathemes were present as early as six interviews” (2006, p. 79).

Additionally, in their metasynthesis of qualitative diabetes self-management studies, Gomersall, Madill, and Summers (2011) report that the sample sizes of the 38 articles they reviewed ranged from 6 to 119 with a mean of 26. Of the 38 articles reviewed, twelve (32%) had sample sizes of 15 or fewer; 21 (42%) had sample sizes of 20 or fewer.

Although they are academicians in an unrelated field (Information Science [IS]),

Marshall, Cardon, Poddar, and Fontenot (2013) examined 83 IS qualitative studies to explore each author’s sample size decision making process. Based on their analyses, they recommend a sample size of 20 to 30 for grounded theory qualitative studies and between 15 to 30 for single-case studies.

The analysis herein is based on 30 transcripts and reflects both the “private”

(personal interview) and the “public” (physician visit) perspectives of the participants concerning self-management of diabetes. Although a subjective judgment since coding changes were not tracked empirically, saturation in the present study was reached after five or six transcripts were coded. The basic structure remained applicable thereafter with relatively minor adjustments or enhancements.

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Chapter Four: Themes Derived from the Literature Review

Introduction

Searching the literature played a prominent and on-going role in writing all

facets of this dissertation. The process was emergent, iterative, and continued from the

beginning of the project through the preparation of this report. At each step, theory, methodology, and analysis, along with their attendant literature, informed each other.

To build the theoretical framework, this writer initially drew from the tenets of

Conflict Theory as elucidated by Marx, and also considered the work of Engels,

Bourdieu, Weber, Giddens, Cockerham’s health lifestyle model, and other theorists exploring the agency/structure nexus (e.g. Musolf, 2003; Michie, 2001; Hitlin & Elder,

2007). The work of these scholars exploring the agency/structure tension formed the basis for the initial exploration of the literature.

As the review continued into the analysis phase of this project, the oeuvres of several other theorists, scholars, and clinicians were consulted; these writers expanded upon, amended, augmented or otherwise broadened the “social determinants of health” discourse in general (e.g., Marmot, Raphael, Waitzkin, Navarro, Link, Phelan,

Golden, Earp, Stokols, and McLeroy among others) and in relation to type 2 diabetes specifically (e.g., Hill, Peyrot, Glasgow, Brown, and R. J. Walker among others). Still other scholars explored the nexus of SDOH and the treatment and management of diabetes specifically among African Americans and other minority and low socioeconomic populations (e.g., Bhattacharya, Chlebowy, Walker, Sherman, Chaufan, Lutfey, D. R.

Williams, Lopez-Class among others). The contributions of several of these scholars are

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discussed in the review below as well as in the Theoretical Framework section of this paper.

Methodologically, the work of several primarily grounded theory scholars was consulted. These included most prominently Charmaz, as well as Strauss, Corbin, Glaser,

Denzin, Lincoln, Guba, Creswell, Saldaña, Cohen, Crabtree, Marvasti, and Trochim among others. Detailed citations for these authors is not included here because their work is extensive and spans decades of contributions. A reference to any one article or book will produce a readily-available compendium of their work. This literature is discussed and applied to the research problem at issue in the Methodology section of this report.

This chapter discusses the processes used to generate and evaluate the literature that ultimately informed the analysis and interpretation of the work herein and the conclusions drawn from that search. Undertaking any literature review in this

Digital Age is a daunting endeavor. One might assume that, depending on study objectives, it is possible to amass literally thousands of articles pertaining to the subject at hand. Millions of academic journals and articles, conference presentations, government and foundation-sponsored reports and studies, databases, search engines, datasets, videos, and images are available internationally, instantaneously on the

Internet. Most dissertation literature reviewers, this writer included, lack the resources

(time, funding) to produce a 100% complete, fully-realized, exhaustive, and definitive

(systematic) review of literature on any particular subject especially in view of the collaborative, cross-disciplinary nature of much academic research today. Given the

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enormity of the task most researchers of necessity must delimit the review effort. In this

case, parameters were placed (discussed in detail below) on the search process with regard to purpose, goals, focus, perspective, coverage and organization (Cooper, 1988;

2009).

This writer approached the literature review with two overarching purposes in mind, and it was consequently conducted it in two steps. The first goal was to gain a broader understanding of the larger sociological issue underpinning the work of this dissertation: how social structure affects an individual’s lifestyle and behavior. As will be discussed in greater detail below, this quest initially focused on the variables “social structure” and “social environment” but ultimately came to include the far-reaching phenomenon initially used by the World Health Organization, “social determinants of health” (SDOH).

In this first phase, the intent was to seek a better understanding of the construct: its general discourse, vocabulary, key variables studied, sensitizing concepts, methodological practices, relationships between research findings and practices, and theories and models advanced to explain its influence on both individual and population health.

In this literature review stage, an attempt was made find exemplary or seminal theoretical and empirical work, to discover scholars and experts prominent in the field, and to understand the historical development of the construct. The bulk of the discussion regarding historical development of the SDOH construct is included in the

Theory section. The information gleaned in this step was used to inform the

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development and refinement of the study’s coding and analysis structure and to provide

a framework for discussing study findings in a larger context. That context included

exploring if, how, and the degree to which knowledge gained in this field has been

translated into practices attempting to understand, prevent, manage, and ameliorate the deleterious effects of diabetes.

The second purpose of this review was to explore previously conducted research

that relates specifically to the subject of interest: How inner-city, socioeco-nomically

disadvantaged African American adults with diabetes navigate social environmental

barriers to health self-management. As expected given the extensive literature exploring the phenomenon of interest, several on-point articles were found and are summarized in Table 9 (see, e.g., Clochesy, Gittner, Hickman, Floersch, & Carten, 2015; Bhattacharya,

2013, 2012; Chlebowy, Hood, & LaJoie, 2013, 2010; Cagle, Appel, Skelly, & Carter-

Edwards, 2002; Sherman, 2015; Sherman & McKyer, 2015; Sherman, McKyer, Singer, &

Larke, 2014). Similarly, there are thousands of articles, documents, studies, etc. concerned with the more expansive, umbrella issue “social determinants of health”

(SDOH), and Table 9 presents a sample of that literature as well.

On the other hand, this researcher did not expect to find a study that totally replicated the one discussed herein. That is, this project is concerned with a specific

population of individuals located in specific settings (primary physicians, clinic, medical

system, neighborhood, community) at a specific point in time and space. By definition,

“social determinants of health” are unique to an individual or a population of individuals

similarly positioned with regard to myriad variables (discussed in detail below) involving

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“physical location” (e.g. quality of housing, public green space, water quality, air quality, neighborhood milieu, proximity of toxic materials, et al.) as well as social and cultural milieus.

A brief analysis of the on point articles (e.g. those addressing how African

American adults with diabetes self-manage their health) was conducted to compare and contrast the experiences of African American adults with diabetes across different physical, social, and cultural “locations.” A brief summary of the articles is presented in

Table 8 and includes each study’s purpose methodology, variables studied, and results.

The Discussion section in Chapter Six compares and contrasts this literature with the findings of this study. The following two sections discuss (1) the research processes and strategies used to produce this review and (2) the results of that review based on the purposes outlined above.

Finally, as emphasized at length elsewhere in this report, the SDOH discussed herein relate to overall health and well-being as well as to diabetes specifically.

Diabetes is a complex disease that affects the whole person, is related to a host of comorbidities, and affects most aspects of patients’ lives. Obesity is implicated in its etiology and exacerbates its management. Both obesity and diabetes have been increasing over the past several decades. Consequently, the nexus of obesity, rising rates of diabetes, and the powerful influence of physical and social environmental factors invites consideration of variables that affect health in general as well as diabetes specifically.

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Process/Search Strategies

The literature was initially searched to understand the general sociological, substantive issue at hand; that is, how social structure influences health and health promotion. The search was subsequently narrowed to address specifically how African

Americans in the United States with diabetes self-manage their illness in the face of

social environmental barriers. Several search terms were initially used to capture the

concept since it became apparent there is little consensus on “naming” or defining it in

the literature within and across disciplines. The following search terms were used originally:

“diabetes” AND (self-management OR self-care) AND (“social structure” OR “social environment” OR “social determinants” OR “social conditions” OR “social context” OR “social factors” OR “social ecology” OR psychosocial) AND (barriers OR obstacles) and (" Blacks" or "African Americans")

Dozens of major academic databases available to the Case Western Reserve

University community as well as search engines available to the general public were accessed. These included: Summon, Academic Search Complete, Annual Reviews,

Directory of Open Access Journals, Article First, Sage Journals, Ohio Link, EBSCO, JSTOR,

ISI Web of Science Databases, PsycINFO, CINAHL, SocINDEX, Sociological Collection,

Social Sciences Citation Index, and PubMed.

Google Scholar was used as an adjunct to the above databases. Google Scholar now appears as a link in some academic databases and has been found to be “on average, more scholarly than materials found only in library databases” (Howland,

Wright, Boughan, & Roberts, 2008, p. 227). The same authors found no statistically

significant differences in scholarliness across disciplines.

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Although both academic databases and the individual sites for sociology journals

specifically were consulted, most of the literature informing this study came primarily

from the areas of public health, behavioral health, epidemiology, nursing, and

publications specific to the diabetes community (e.g., Diabetes Care, Diabetes, Current

Diabetes Reports, Diabetic Medicine, The Diabetes Education, et al.

Web sites of health and diabetes stakeholders were also consulted. These

included U. S. government agencies (e.g., CDC, Healthy People 2020, Agency for

Healthcare Research and Quality, et al.), the World Health Organization, and private foundations funding health initiatives (e.g., the Robert Wood Johnson Foundation, The

Kresge Foundation, American Diabetes Foundation, UnitedHealth Center for Health

Reform & Modernization, et al.). Two journals pertain to the subject matter of the present study: The Journal of Health Care for the Poor and Underserved and the Journal of Social Health and Diabetes. The latter is an international journal publishing largely the work of authors outside the United States, is based in India, and operates under the aegis of Novo Nordisk (http://www.joshd.net/aboutus.asp).

Using the above search terms and working through the various databases, prominent scholars and seminal articles were noted; and citation chaining was used to discover additional relevant material. That is, this writer looked at papers cited by the authors of the paper under review (“backward” searching) as well as authors subsequently citing the article (“forward” searching). This strategy led to an understanding of the trajectory of work that has been done in the areas of interest.

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In addition to citation chaining, when looking for articles concerning specifically how African Americans self-manage diabetes, this researcher first took note of reviews

of the literature, meta-analyses, or syntheses of previous research to get an initial focused view of the types of work that have been done in this regard.

As was true during data analysis, searching the literature for relevant theoretical, empirical, and review articles was iterative, emergent, and ongoing throughout the process of conducting the study. The end result was the attainment of a “gestalt,” whole-picture view of the constructs of interest: social determinants of health and self- management of diabetes.

On the other hand, the task was overwhelming; and it became clear from visiting and revisiting the literature over the several years of working on this project that conducting a definitive, exhaustive review of all literature is beyond the ability (time and cost constraints) of seasoned researchers let alone an unfunded Ph.D. student.

Consequently, the results discussed below take a “big picture” view of the construct, the nomenclature, the variables studied, and the linkages between theory, research, and practice.

Results

Terminology

From the onset it became clear that there is little if any consensus on how to name, refer to, and define those social and physical environmental factors that affect health in general or diabetes specifically (Barnet & Casper, 2001). Walker et al. (2014a, p. 46) characterize SDOH as a “poorly defined term used to describe an array …. of

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health-related issues,” (e.g., demographic, cultural, economic, social, psychological, et

al.). A number of terms have been used in the literature, and many articles contain

references to more than one (e.g., Braveman & Gottlieb, 2014).

Terminology used in this regard includes: “biopsychosocial” (e.g., Wade &

Halligan, 2004), “social environmental” (e.g., Gleeson-Kreig, 2008; Glasgow, Strycker,

Toobert, & Eakin, 2000), “social conditions” (e.g., Link & Phelan, 1995; Phelan, Link, &

Tehranifar, 2010); “fundamental causes” (e.g., Link, Phelan, Miech, & Westin, 2008;

Lutfey & Freese, 2005; Phelan & Link, 2005); “social ecological” (e.g., Hill et al., 2013;

Glasgow, Strycker, Toobert, & Eakin, 2000), “socioeconomic” (e.g., Pampel, Krueger, &

Denney, 2010; Herd, Gosling, & House, 2007), “social contextual” (e.g., Gallant, Spitze, &

Grove, 2010; Glanz, Rimer, & Viswanath, 2008; Albright, Parchman, & Burge, 2001),

“social patterning” (e.g., Braveman, Egerter, & Williams, 2011; Jarvis & Wardle, 2006;

Jarvis & Wardle, 1999); “social epidemiology” (Krieger, 2001); “social factors” (House,

2002); and more recently, attributable to the work of the WHO, “social determinants of

health” as documented by the several citations in this document. When one considers that SDOH can be anything that isn’t biomedical, it is not surprising that so many terms would become “attached” to the construct (Braveman, Egerter, and Williams, 2011).

The lack of consensus with regard to descriptors and definitions of SDOH, as well

as the numbers of citations, makes any search and exploration of the literature

problematic. It appears that referring to physical and social environmental factors as

“social determinants of health” is gaining traction as standard terminology since, in

addition to the WHO, it has been adopted internationally and nationally by myriad

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governmental stakeholders (e.g., CDC, Healthy People 2020, National Association of

Chronic Disease Prevent and Health Promotion), private foundations funding health

promotion research (e.g., Robert Wood Johnson Foundation, the Kresge Foundation,

The Commonwealth fund, et al.), and health promotion initiatives in general (e.g., the

National Expert Panel on Social Determinants of Health Equity, Healthy Communities

Program, The National Diabetes Educational Program). Not only is some degree of

consensus forming with regard to nomenclature, but also the volume of literature

exploring SDOH is burgeoning (Marmot & Allen, 2014; Braveman, Egerter, & Williams,

2011) as will be discussed in greater detail below.

Constructs/Definitions/Glossary

Just as historically there has been no consensus with regard to “naming” the

SDOH construct so, too, various definitions have been offered. These range from the

relatively succinct definition used by the WHO (and now by international and U. S.

governmental agencies, et al.), to a comprehensive consideration of variables offered by

Barnett & Casper (2001).

The WHO definition of “social determinants of health” has been adopted internationally and nationally by myriad stakeholders (e.g., CDC, Healthy People 2020,

Robert Wood Johnson Foundation, et al.):

The social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities - the unfair and avoidable differences in health status seen within and between countries (WHO, 2015).

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Although purporting to define “social environment,” Barnett and Casper’s

(2001) definition of SDOH is included here in its entirety because it illustrates the

complexity and problematic nature of fully defining the construct.

Human social environments encompass the immediate physical surroundings, social relationships, and cultural milieus within which defined groups of people function and interact. Components of the social environment include built infrastructure; industrial and occupational structure; labor markets; social and economic processes; wealth; social, human, and health services; power relations; government; race relations; social inequality; cultural practices; the arts; religious institutions and practices; and beliefs about place and community. The social environment subsumes many aspects of the physical environment, given that contemporary landscapes, water resources, and other natural resources have been at least partially configured by human social processes. Embedded within contemporary social environments are historical social and power relations that have become institutionalized over time. Social environments can be experienced at multiple scales, often simultaneously, including households, kin networks, neighborhoods, towns and cities, and regions. Social environments are dynamic and change over time as the result of both internal and external forces. There are relationships of dependency among the social environments of different local areas, because these areas are connected through larger regional, national, and international social and economic processes and power relations (p. 465).

In a third example, Braveman, Egerter, and Williams (2011) define SDOH as being

“used to refer broadly to any nonmedical factors influencing health” (p. 383). This

interpretation of SDOH is adopted for the present study because it appears to offer the

most succinct, appropriate conceptualization given the vast numbers of non-medical,

non-biological variables involved in the etiology and management of illness and disease.

Consequently, the discussions below reflect this gestalt view.

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Health Disparities Among Black Americans

This study is concerned with health Health Status Disparities disparities based on race (African Americans) “Non-Hispanic Blacks are the most likely of all races examined to report they are in and socioeconomic class (low) although health fair or poor health.”1 disparities (i.e., “types of differences in health “Blacks are most likely to have a chronic illness or disability, with almost half reporting such that are closely linked with social or economic a condition.”1 “Even at higher income, Blacks disadvantage”) exist for other protected, priority are more likely to suffer from a chronic condition or disability populations (CDC). “Priority populations” are than Whites and Hispanics.”1 Access to Care Disparities “groups with unique needs or issues that require “Black, Hispanic, and Asian adults are more likely to be special attention” and in addition to African without a regular doctor than White individuals.”1 Americans include women, children, older Quality of Care Disparities “40% of Blacks received worse adults, residents of rural areas, and people with care than Whites, and Hispanics received worse care than non- disabilities or receiving end of life care (AHRQ). Hispanic Whites for about 40 percent of quality measures.”2 The CDC lists a glossary of terms used in “28% of physicians visited primarily by Black patients vs. 19% of physicians visited research and practice to refer to constructs primarily by White patients reported that they were not involved in the study of SDOH, and the able to provide high-quality care to all their patients.”1 definitions in their entirety may be referenced 1Racial and Ethnic Disparities in U. S. Health Care: A Chartbook (2008). Retrieved July 6, 2015 from on their web page http://www.cdc.gov http://www.commonwealthfund.org/u sr_doc/mead_racialethnicdisparities_ch artbook_1111.pdf

/nchhstp/socialdeterminants/definitions.html. 2Robert Wood Johnson Foundation, Quality Field Notes (2015). Retrieved July 6, 2015 from These terms include: health disparity, health http://www.rwjf.org/enlibrary/articles -and-news/2014/06/race-and- ethnicity-impacts-patient-access-to- equity, health inequality, health inequity, health quality-health-care.html. literacy, index of disparity, poverty,

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socioeconomic position, socioeconomic status, and socioeconomic gradient in health

(see also Braveman, 2006).

The differences in their definitions are nuanced, but they all basically refer to the

fact that some people, by virtue of their disadvantaged group status, experience poorer

health and have less access to adequate and quality health care than do, in the United

States, White people of higher socioeconomic status. The health disparities they suffer for the most part are attributable to systemic obstacles such as discrimination and exclusion and include the groups defined above as priority populations. Groups meeting this definition are basically those defined above as “priority” populations.

Consequently, an important term relative to this study is “health inequity,”

which is defined as differences or disparities in health outcomes “that [are] systematic,

avoidable, and unjust” (CDC, 2015; Braveman 2006, p. 168; Whitehead & Dahlgren,

2006). Health disparities occurring because of health inequities are the primary concern

of this paper as is the case in a series of reports published during the first decade of this

century by the WHO’s Commission on the Social Determinants of Health (WHO,

Commission on Social Determinants of Health, 2005 – 2008).

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The Introduction to this dissertation

presents evidence of the degree to which African African American Health Disparities Compared to Non- Hispanic Whites* Americans in the United States not only have

Blacks are poorer health status than White Americans, but 60% more likely to have T2D also experience less access to and/or receive 2 times more likely to undergo leg, foot, or toe amputation inferior quality of care. 20% less likely to receive treatment for depression An exhaustive compilation of the race and 2.1 times more likely to die from asthma. ethnic disparities in U. S. healthcare could fill 40% more likely to die from stroke. tomes. And it does. See for example Racial and 30% more likely to die of heart disease Ethnic Disparities in U. S. Health Care: A 40% more likely to be obese Chartbook, 2013; Minority Health: Recent 2.5 times more likely to die during pregnancy Findings, 2013; and the CDC’s Health Disparities 9 times more likely to be diagnosed with HIV and Inequalities Report. According to these 2 times more likely to die from prostate cancer reports, racial/ethnic minorities in the 2 times more likely to die from cervical cancer U. S. experience health disparities across a 40% more likely to die from breast cancer number of health status measures and *African American Health Disparities Compared to Non-Hispanic Whites. outcomes, and these differences are driven by (2014). Retrieved July 6, 2015, from http://familiesusa.org/product/african -american-health-disparities- compared-to-non-hispanic-Whites discrimination, exclusion, income, education,

work status, poor housing, segregation, and

other neighborhood, community, and national environmental factors: “Your health depends on who you are …race and ethnicity continue to influence a patient’s chances of receiving many specific health care

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interventions and treatments” (Robert Wood Johnson Foundation, Quality Field Notes,

2014).

This paper is concerned with the health status of African Americans with

diabetes and does not present expansive statistics or review documentation of the various ways other racial and ethnic minorities are subject to health inequities.

Additionally, because of the voluminous documentation and evidence readily available, this paper does not include an exhaustive review of health disparities suffered by

African Americans. That being said, the sidebars above present an abbreviated, yet compelling, picture of the degree to which Black Americans suffer health disparities.

Although retrieved from the Families USA website, the statistics presented are based on

CDC data.

Growth and Multidisciplinary Nature of the Study of SDOH

Although dozens of academic databases and search engines exist (most are proprietary and costly to access), this writer searched the Summon database available to the Case Western Reserve University community to illustrate the degree to which the construct SDOH has been increasingly used in the literature and the degree to which the

SDOH knowledge base has increased. Summon is an all-encompassing, “one-search” engine indexing dozens of journals and other databases (see, for example, http://media2.proquest.com/documents/Summon-Databases- Full-Text.pdf).

In the first search, the terms “social determinants” or “social environment” or

“social ecology” and “health” were used. The search parameters were as follows:

English; all available years; scholarly, peer-reviewed material only; and the search

118 included results from “outside CWRU’s collection.” Newspaper articles, book reviews, and dissertations were excluded, and no exclusions were made by country and subject

(discipline). The search resulted in 119,374 citations, from 1 in 1916 to 9,355 by the end of 2014. Most of the articles were published between 1990 and 2015 with publications peaking after the release of the 2008 WHO report.

Examination of the Summon database results is instructive as well in highlighting the various disciplines involved in exploring SDOH. The disciplines publishing the greatest numbers of SDOH articles included medicine (16%), public health (13%), psychology (12%), social welfare and social work (8%), sociology, social history, and social sciences (8%), and education (7%). In a second step “diabetes” was added. This netted 2,694 citations, almost all having been published between 2008 (after the WHO report). The disciplines were similarly represented as outlined above. Most articles were published in medical and/or public health journals.

Additionally, many articles are empirical studies or systematic reviews of diabetes self-management interventions, often among ethnic/minority populations; see, for example, Bolen, et. al. 2014 (patient activation interventions); Strom and Egede,

2012 (social support interventions); Smalls, R. J. Walker, Bonilha, Campbell, and Egede,

2015 (community interventions, African Americans); Samuel-Hodge et al., 2009 (church- based interventions). Clearly, although SDOH have been considered since antiquity, interest in the phenomenon has burgeoned in the early years of the 21st century. This summary includes only the citations found in a Summon Database search. As noted earlier, several other databases (e.g., Web of Science, Academic Search Complete,

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Article First, Pub Med, Google Scholar, et al.) were searched throughout the research

process, from inception through analysis.

After dozens of database searches, prominent scholars publishing in the SDOH

arena became apparent. These include, for explorations of SDOH in general, prominently, Sir Michael Marmot, who was a key contributor to the WHO’s Social

Commission. Other academics and researchers deeply involved in exploring SDOH issues include R. J. Walker, Peyrot, Glasgow, Raphael, Braveman, V. Navarro, D. Williams, among others. Scholars particularly interested in African Americans’ experiences with diabetes include: Bhattacharya, Cagle, Chaufan, Chesla, Chlebowy, Lopez-Class, Majeed-

Ariss, and Sherman, among others. This search exercise was intended to illustrate (1)

the growth of interest in SDOH, especially since the 2008 WHO report, and (2) the

multidisciplinary nature of SDOH research.

SDOH Variables (barriers and/or facilitators) implicated in the etiology and treatment of diabetes and health in general

As suggested by the above definitions, arguably hundreds of social and physical environmental variables influence personal and public health for better or for worse. As observed by Braveman and Gottlieb (2014), SDOH are basically everything and anything that isn’t medical or biological.

Briefly reviewing a discussion included in the Theory chapter, the scientific literature generally recognizes five major dimensions of population and individual health: Biology and genetics (e.g., gender and race), individual behavior (e.g., alcohol use, injection drug use, unprotected sex, and smoking), social environment (e.g., discrimination, ethnicity as it applies to social customs and traditions, income, education

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level, and marital status), physical environment (e.g., place of residence, crowding

conditions, and the built environment), and health services (e.g., access to quality care,

insurance status, and previous diagnosis of a health-related outcome) (CDC, 2015;

World Medical Association, Social Determinants of Health, 2015; Beltran, Harrison, Hall,

& Dean, 2011). The Healthy People 2020 initiative includes a sixth dimension,

“policymaking,” at the local, State and Federal levels (Office of Disease Prevention and

Health Promotion, 2015).

The WHO and CDC (as well as other scholars) have proffered models to explain

the relationships among the various SDOH variables, and they reflect complexity at four

levels. There are multiple numbers of SDOH; there are multiple dimensions of health

affected by those SDOH (e.g., mortality, morbidity, well-being, et al.); there are multiple

causal pathways through which SDOH influence each other and health outcomes

(occurring across the life course and generations); and there are multiple levels of

influence, including intrapersonal, interpersonal, community, institutional, and societal

(The Robert Wood Johnson, Health Policy Brief, 2014;).

In addition to these factors, decades of research demonstrate that psychological/social factors such as stress directly and indirectly affect health status as well (Thoits, 2010). In a review of 39 (“relevant”) articles (culled from 930 titles), Kelly and Ismail (2015, p. 441) concluded:

The review found an increased risk for diabetes in people: exposed to stressful working conditions or traumatic events; with depression; with personality traits or mental health problems that put them in conflict with others; of low SES, either currently or in childhood; and in racial/ethnic minority populations, independent of current SES.

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Although scientists do not know the precise contribution of each dimension to

overall health, various stakeholders over the years have offered estimates (CDC, Social

Determinants of Health, Frequently Asked Questions, 2016). One scholar suggests that genes, biology, and behavior account for 25% of population health, with 75% being explained by the social and physical environments (total ecology) and health

services/medical care (Tarlov, 1999). Similarly, and more recently, Redmon et al. (2014)

estimate that health care contributes only 20% to population health, with modifiable

social and community factors contributing 80%. In contrast, in earlier work Bunker et al.

(1995) suggested that health care accounted for 43% of population health status with

“other factors” accounting for 57% (Bunker, Frazier, & Mosteller, 1995).

Two items are worthy of note in a discussion about relative contributions to

health status.

One, as illustrated by the WHO model (Figure 7), although individual behaviors

contribute to health status, they are inextricably linked to and influenced by other

determinants of health; that is, SDOH (material, social, physical, emotional, political,

cultural, etc. al) interact with and influence individual behaviors and are the “causes of

the causes” of specific lifestyle choices (Marmot, 2014, p. S517; Sallis & Owen, 2015;

RWJ, Health Policy Brief, 2014). This is the basis for Cockerham’s (2005) health lifestyle

theory used to frame the work of this dissertation although his model does not include

macro level variables, as does the WHO model (quite prominently).

Secondly, estimates of the contribution of health care services to health status

have dwindled over the years relative to other contributing factors. Some argue that

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stakeholders place too much emphasis on medical care and not enough on community-

wide efforts for health improvement and promotion (Marmot & Allen, 2014; McGinnis,

Williams-Russo, & Knickman, 2002). Of the trillion dollars the United States spends on

health, 95% goes to direct medical services and only 5% to “population wide approaches

to health improvement” (McGinnis, Williams-Russo, & Knickman, 2002, p. 78). The

benefits of the massive amounts spent on health care in the United States are

undermined by “very low investments in social services” such as housing programs,

family support systems, employment programs, et al. (Robert Wood Johnson

Foundation, Health Policy Brief, 2014, p. 1).

The massive numbers of variables implicated in the etiology, management, and treatment of diabetes (and health in general) are used in the literature alternatively as predictors or outcomes, as mediators or moderators, as independent or dependent, and as exogenous or endogenous depending upon the intent and design of the research.

Noting that exploring social and psychological barriers to diabetes self-management is

“complex” and “can be overwhelming” (p. 39), Glasgow, Toobert, and Gillette (2001) state that one of the first conceptual issues is to decide what is a barrier and what is an outcome. For example, depending on the research question, “depression” can be used as an independent/barrier variable or as an outcome/dependent variable in diabetes

research.

Often, socioeconomic and psychological variables are used as exogenous

variables (see Figures 1, 5 and 6). An exogenous variable has been defined as a “factor

whose value is determined by factors or variables outside the causal system under

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study” (Lewis-Beck, Bryman, & Liao, 2004) In omitting the “causes” of the exogenous variables from a model, researchers ultimately lose information about powerful influences that are related to the phenomenon under study. For example, many health models use socioeconomic status as a predictor, exogenous variable. However, socioeconomic position is “caused” by numerous factors outside the causal system under study, e.g., early childhood experiences; parents’ income, wealth, and social class; generational and cultural influences; discrimination and racism; public policy, laws; neighborhood characteristics, and so forth. When considering the social determinants of health, Braveman and Gottlieb advise that (2014, p. 19) “it’s time to consider the causes of the causes.”

In empirical studies exploring the pathways from SDOH to health outcomes

(specifically those for diabetes), the outcome variables are generally biomedical (e.g.,

A1C, blood pressure, morbidity, health status), psychological (e.g., stress, depression, self-efficacy, overall quality of life), and/or social well-being measures (see Bolen et al.,

2014, Walker et al., 2014b; Brown et al., 2004;).

SDOH variables have been used alternatively as predictors or outcomes, as mediators or moderators, as independent or dependent, and as exogenous or endogenous depending upon the intent and design of the research. For example, in the model proposed by Brown, et al. (2004) (Figure 5, page xx) the health outcomes measured for individuals with diabetes include, among others, morbidity, mortality,

“immediate” diabetes outcomes (e.g. glycemic control, blood pressure, cholesterol), and quality of life. Independent variables include socioeconomic position and neighborhood

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factors as well as race/ethnicity, age, and sex. In this model (as well as Walker et. al,

2014b) mediating and moderating variables are specific to the management of diabetes

and include health behaviors, health access, and processes of care (e.g., foot

examination, eye examination, A1C measurement).

The conclusion is irrefutable given the decades (centuries) of research exploring

the phenomenon and the ensuing accumulated evidence: Although individual behavior

is a factor in the management of health and diabetes, it is not the primary dynamic; and

it is itself influenced by psychological, social, and environmental variables beyond the

control of the individual (Braveman & Gottlieb, 2014; Bierman & Dunn, 2006). Morever,

as above estimates attest, both health services and health technology play a less

significant role than originally thought in determining health status (Clark & Utz, 2014).

Given the vast numbers of SDOH variables linked to health in general and

diabetes in particular, the present study does not include an exhaustive listing or discussion of all the variables and the pathways through which they affect health. Given the scale of the empirical work done, the purpose of this literature review was not to amass outcome statistics and determine methodological shortcomings but rather to understand the breadth, depth, and history of the scholarship exploring the construct.

Producing an exhaustive compendium of the role of SDOH and health (and diabetes) is

not only beyond the scope of this paper but could arguably be said to comprise several

scholars’ life work.

Similarly, as noted earlier, thousands of interventions designed to help

individuals manage diabetes have been conducted worldwide. Most of these

125 interventions, especially in the United States, have been conducted and based on theories of individual behavior change and do not address the root influences on health status (see, for example, Bolen et al. 2014). As a number of scholars have noted, this approach does not and cannot resolve the diabetes epidemic because it is not addressing the “causes of the causes” (Braveman & Gottlieb, 2014).

Consequently, it was not a purpose of this literature review to examine in great detail the outcomes of these self-management behavioral interventions. Additionally, the evidence of the effectiveness of the interventions (e.g., diet, exercise, blood glucose monitoring, education, counseling, et al.) is spotty and problematic in part because of methodological issues (Bolen, et al., 2014). That being said, there is growing interest in funding and conducting community-based intervention efforts.

Because of the immensity of the SDOH literature, summary findings are presented in table rather than narrative form to more efficiently convey the breadth and depth of factors that affect individual and population health. It is a premise of this paper that billions of words (as well as research dollars and massive scholarly efforts) have been devoted to exploring and understanding the SDOH phenomenon; but relative to the knowledge and evidence produced over centuries, most health promotion interventions continue to center on individual behavior.

It was not the intent of this paper to add to this volume of “talk,” to produce yet another extensive systematic review of the literature, but rather to contribute the results of one study that illustrate how social environment factors affect the health behaviors of inner-city African Americans with diabetes. Table 6 below presents several

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specific social and physician environmental factors that have been identified as barriers

(and/or faciliators) to the management of diabetes and health in general. I include only one sample citation in each case although numerous others exist.

Table 6. Sample/illustrative list of psychological, social, and physical environmental factors implicated in health and diabetes management (barriers and/or facilitators)

SDOH Example citation biodiversity loss von Hertzen, Hanski, & Haahtela, 2011 Black neighborhoods have higher access to James, Arcaya, Parker, Tucker-Seeley, & fast food Subramanian, 2014

built environment Pasala, Rao, & Sridhar, 2010 childhood dietary patterns Northstone, Joinson, Emmett, Ness, & Paus, 2011 childhood poverty Tamayo, Herder, & Rathmann, 2010 clinician barriers (need for education, lack of Brown, Harris, Webster-Bogaert, Wetmore, time, lack of confidence in clinical skills, Faulds, & Steward, 2002 complexity of diabetes, need for effective charting systems clinician communication skills re diabetes Nam, Chesla, Stotts, Kroon, & Janson, 2011 comorbidities in patients with diabetes Struijs, Baan, Schellevis, Westert, & van den Bos, 2006 continuity of care in diabetes Hanninen, Takala, & Keinanen- Kiukaanniemu, 2001 coordination of care - diabetes management Chen, Tseng, & Cheng, 2013 culture (food, dietary preferences, lifestyles, Nam, Chesla, Stotts, Kroon, & Janson, 2011 traditions, religious beliefs) and diabetes death due to legal intervention (e.g. police Krieger, Kiang, Chen, & Waterman, 2015 misconduct) diabetes in homeless persons Elder & Tubb, 2014 diabetes knowledge McPherson, Smith, Powers, & Zuckerman, 2008 early childhood adversity Garner, Shonkoff, Siegel, et al., 2012 early-life intelligence Schaefer, Caspi, Belsky, et al., 2015 electronic health records and quality of care Cebul, Love, Jain, & Hebert, 2011 environmental noise Basner, Ba Kovats, et al. 2014bisch, Davis, Brink, Clark, Janssen, & Stansfeld, 2014 environmental pollutants and diabetes Hectors, Vanparys, Van Der Ven, Martens …&Van Gaal, 2011 exposure to crime, violence Black, et al. 2010 food additives, chemical residues, natural Shaw, 2014 toxicants in food - cocktail effect

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SDOH Example citation food insecurity Ramsey, Giskes, & Turrell, 2012 green space Astell-Burt, Feng, & Kolt, 2014 health implications of fracking Kovats, et al. 2014 intimate partner violence Campbell, 2002 pervasive exposure to violence Goldmann, Aiello, Uddin, et al. 2011 health literacy Bains & Egede, 2011 health threats of trade agreements Thow, Snowdon, Labonté … & Friel, 2015 helplessness, frustration Nagelkerk, Reick, & Meengs, 2006 higher density of liquor stores in low Romley, Cohen, Ringel, & Sturm, 2014 income and nonwhite areas housing insecurity and diabetes Vijayaraghavan, Jacombs, Seligman, & Fernandez, 2011 income inequality Pickett & Wilkinson, 2015 inequitable distribution of environmental Morello-Frosch, Zuk, Jerrett, Shamasunder, hazards & Kyle, 2011 interactions of patient, physician, systemic Brown, Harris, Webster-Bogaert, Wetmore, factors re diabetes Faulds, & Steward, 2002 job loss/unemployment Brand, 2015 life stressful events and diabetes Mooy, De Vries, Grootenhuis, Bouter, & Heine, 2000 low income neighborhoods Ludwig, et al. 2011 low socioeconomic status and diabetes Agardh, Allebeck, Hallqvist, Moradi, & Sidorchuk, 2011 neighborhood physical and social Christine, et al., 2015 environments re diabetes health literacy and numeracy skills Bohanny, Wi, Liu, Yeh, Tsay, & Wang, 2013 obesogens (chemicals in food, water, Holtcamp, 2012 products) patient health beliefs Ahola & Groop, 2013 patient/doctor relationship/communication Ciechanowski, Katon, Russo, & Walker, 2014 perceived unsatisfactory care re diabetes Tiedt & Sloan, 2015 pesticides Blair, Ritz, Wesseling, & Freeman, 2014 clinician attitudes, beliefs, knowledge Nam, Chesla, Stotts, Kroon, & Janson, 2011 psychological factors Walker, Smalls, Campbell, Williams, & Egede, 2014 racial/ethnic residential segregation White & Borrell, 2010 racism, discrimination Dolezsar, McGrath, Herzig, & Miller, 2014 self-efficacy Aljasem, Peyrot, Wissow, & Rubin, 2001 social support Strom & Egede, 2012 spirituality, religion Bhattacharya, 2012 stress at work, stressful working conditions Heraclides, Chandola, & Witte, 2009 stress Kelly & Ismail, 20915, McEwen, 2012

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SDOH Example citation diabetes perceived as complex, invasive, Stoeckel & Duke, 2015 unrelenting toxic metals and diabetes Afridi, et al. 2008 traffic-related air pollution Kramer, et al. 2010

Table 7 presents a discussion of “macrosocial determinants of health” as explicated by several authors contributing to Galea’s (2007) book examining the phenomenon. Again, the variables at the national and international levels affecting individual and population health are clearly beyond the control of an individual, they are daunting, they span all aspects of life, and they include factors such as globalization, international trade agreements, political and military conflict, corporate practices on many levels, unsafe consumer products, taxation policies, and the effects of climate change on health.

Table 7. Macrosocial Determinants of Population Health (Galea, 2007)

Macrosocial Determinants of Health Cite globalization - global trends in exchanges, interactions Florey, Galea, & Wilson, 2007 including economic, political, social, environmental across three boundaries (spatial, temporal, cognitive) urbanicity (urban living), urbanization (changes in size, Ompad, Galea, & Vlahov, 2007 density, heterogeneity of cities over time), and urban environment (specific features of cities that influence health – social, physical, resource infrastructure) corporate practices (levels: free market system as Freudenberg & Galea, 29007 whole, national/regional economy, specific industry, specific company, specific product, industry practices) health impact of consumer products (alcohol, tobacco, Freudenberg & Galea, 2007 automobiles, food and beverages, firearms, pharmaceuticals) corporate interactions with other sectors Freudenberg & Galea, 2007 (government, science, media) political economic systems (refers to the conditions Waitzkin, 2007 under which economic production is organized (Work

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Macrosocial Determinants of Health Cite of Virchow, Engels, Allende, “Latin American Social Medicine”) class, race, gender, poverty, income inequality, Waitzkin, 2007 perceptions of one’s economic position, access to health care services, national health policies including national health insurance global governance Aginam, 2007 macroeconomics Bishai & Kung, 2007 culture – specific and diffuse effects (diffuse cultural Eckersley, 2007 impact on health: individualism; media influences, role of religion, perceptions of quality of life, views about the future and the world, taxation policies (used to raise revenue, redistribute Caraher & Carr-Hill, 29007 wealth, modify people’s behavior) patent law and policy (e.g. pharmaceuticals) Kellelheim & Avorn, 2007 migration (e.g. trafficking, effects of stigma, racism, Loue & Galea, 2007 cultural differences, et al.) mass media (offer information, entertainment, Viswanath, Ramanadhan, & persuasion, and cultural transmission; define Kontos, 2007 worldviews, knowledge, behaviors) climate change (e.g. increases in mortality during heat O’Neill & Ebi, 2007 waves; production of allergens; concentration of air pollutants; death and injury from floods, landslides, windstorms, fires; disruption of water and sanitation systems, drought, decrease in food supply, survival of disease-causing organisms, water availability and quality conflict, war (within and between country) Bornemisza, Ranson, Poletti, & Sondorp, 2009

Table 8 below presents a list of systematic reviews or metasyntheses of studies that have linked specific psychological, social, and physical environmental to health status and management of diabetes. These are general population studies.

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Table 8. Social determinants of health/diabetes: Barriers and/or facilitators to self-management – general population samples

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators Bagnasco, Systematic review Factors influencing health status, duration of disease, Study in progress DiGiacomo, Della protocol self-management in comorbidity, diabetes knowledge, Implicated factors Mora, Catania, patients with diabetes. understanding of the care plan, found in literature Turci, Rocco, & Describe a protocol understanding of the treatment review Sasso, 2013 for a quantitative regimen, complexity of treatment, systematic review, complexity of medications, health Factors influencing to identify, critique, beliefs, attitudes, knowledge, self- self-management and summarize efficacy, self-care agency, age, in patients with factors that education level, type of diabetes, type 2 diabetes: influence self- partner’s influence, health literacy, a quantitative management decision-making skills, patients systematic review education. beliefs re adherence, family habits, protocol social support, helplessness, stress, frustration, social isolation, interpersonal conflicts, depression, fear re hypoglycemic attacks, self- care skills, age, motivation, understanding of disease. belief in treatment effectiveness, linguistic barriers, problems with weight, fatigue, problem-solving skills

Clark & Utz, 2014 Systematic review Examine current poverty, cultural influence of “Study findings Social understanding of the family, gender roles, financial indicate that external determinants of Search terms: social determinants restraints, social support, or upstream factors

131 type 2 diabetes type 2 diabetes affecting diabetes and spirituality and faith, healthcare prominently affect

health. provider factors, lack of public individuals diagnosed

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators and health in the social transportation, language barriers, with diabetes, in part United States determinants employment issues, cost of by influencing self- health medication, burden of taking management and in determinants medication, lack of diabetes turn exerting lasting United States physicians and educators, lack of effects on long-term insurance, education materials not diabetes and health 20 descriptive screened for literacy levels or outcomes” (p.302) studies cultural appropriateness, cultural n = 15 quantitative and folk beliefs, team-based care, n = 5 qualitative psychological factors, spousal support, race, patient-provider communication, barriers to food access, lack of sidewalks, community crime rates, education level, economic stability, health beliefs Gomersall, Madill, Metasynthesis of “Synthesize the most sleepiness; interrelationships Literature assumes & Summers, 2011 qualitative studies contemporary between culture and diabetes that diabetes qualitative research on management (e.g. refusing food at, management is A Metasynthesis of n = 38 articles, patient perspectives on or bringing diabetes-appropriate influenced by multiple, the Self- sample sizes from 6 the self-management alternatives family events “would complex, competing Management of to 175, mean 29 of type 2 diabetes; that be considered rude to the hosts factors, including Type 2 Diabetes is, the literature that and would not be accepted”; interpersonal relations, Respondents with has been published in collectivist vs. individualistic ways gender, and diabetes the first 10 years of the of living); kinship relationships; sociocultural context. 21st Century.” family; spirituality (especially for However, diabetes General populations African Americans); God as management was Inspect ways in which support or as healer; degree of construed as a facet of key phenomena were self-control; beliefs (e.g. acting on individual agency and 132 constructed in the advice of doctor but diabetes still was accepted

identified literature; not controlled, believing that take uncritically, placing

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators i.e., the agency of the medication “cures” diabetes; accountability for self. preference for patient provider health with patients relationship (partnership vs. themselves. welcomed paternalism); gender and gender roles (women “The most construed diet as their contemporary responsibility vs. men viewed qualitative research on dietary change as a matter for the self-management wives/partners); belief that of type 2 diabetes diabetes was complex and addresses a number of confusing; miscommunication with interesting and health professionals; procedures important conceptual considered threat to integrity of themes that include body; comorbidity (heart attack); self-management in problems using insulin (“diabetic context, gender and junkies”); view of selves as self- management, self “unhealthy”; adoption of society’s under attack, and individualistic concept of self intervention and (victim self-blame, sense of regulation of the self. personal failure); ability of patient to use “cues from embodied experiences” Joseph-Williams, Systematic review To systematically too little time for appointment, “The results suggest Elwyn, & Edwards, and thematic review patient- clinicians who “seem” too busy and that a large number of 2013 synthesis reported barriers and “hurried,” feelings of guilt “taking patients currently can’t facilitators to shared up physicians’ time,” full waiting participate in Knowledge is not Study decision making (SDM) rooms, having too many clinicians healthcare, due to power for patients: findings/results for and develop a involved in care, not being known various structural, A systematic each included paper taxonomy of patient- personally by the clinician, “sup- predisposing, 133 review and were extracted reported barriers. optimal informational flow” interactional, and

thematic synthesis verbatim and between clinicians, continuity of preparatory factors,

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators of patient-reported entered into care, nurses who can “explain rather than the more barriers and qualitative software information” (e.g. care by a team common view among facilitators to for inductive of healthcare workers), healthcare clinicians that patients shared decision analysis. setting (e.g., noisy, lack of privacy), won’t participate making overspecialization of doctors, lack because they don’t 2956 unique of reimbursement for physicians want to. Patient- references who take the time to share reported barriers and 289 full text articles decision making with the patient, facilitators 45 articles met comorbidities, cognitive to SDM relate to how inclusion criteria impairments, age, ethnic the healthcare system background, having poor is organized (i.e. time articulation, lower level of available, continuity of education, differences between care, organization of doctor and patient (e.g., dialect, workflow and the accent, age, sex), nature of setting itself) and to condition (e.g., infectious, drug what happens in the addiction, alcoholism), attitudes re consultation (i.e. decision-making and authority, predisposing factors sensitive topics (end-of-life such as patient decisions, sex), clinicians’ characteristics, presumptions about the patient interactional role, patients’ presumptions about influences including the clinician role, interpersonal the power imbalance characteristics of physician, some between patient and clinicians do not want to take part clinician, and in “shared decision making” preparation for the SDM encounter and the process itself, including knowledge 134 gain). These need to be

considered alongside

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators clinician-reported factors” (p. 306).

Nam, Chesla, Systematic review Summarize existing Patient factors Stotts, Kroon, & n = 1,454 articles in knowledge regarding patient’s adherence, attitude, Janson, 2010 English published barriers of diabetes beliefs, and knowledge about between 1990 and management from the diabetes; cultural beliefs and Barriers to 2009 perspectives of language capabilities; financial diabetes patients and clinicians resources; comorbidities; social management: type 2 diabetes support; race and ethnicity; Patient and patients’ barriers cultural norms; socioeconomic provider factors clinicians’ barriers status; insurance status; self-management education/health literacy level; spirituality; lack of English Types of studies proficiency; cultural practices (e.g., reviewed: food and dietary preference, qualitative lifestyles, traditional and religious cross-sectional beliefs); “frustrations toward RCT diabetes”; types of health services retrospective received; non-collaborative disease cohort management (decision making not prospective shared); communication skills; cohort attitudes toward seriousness of parallel group disease; depressive symptoms; design logistics of obtaining care; physical prospective limitations; self-efficacy; perceived observ. side effects of medications; weight 135 descriptive, cross problems, fatigue; pain;

sectional transportation problems;

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators emotional barriers, e.g., fear of insulin therapy

Clinician factors clinician’s attitude, beliefs, knowledge about diabetes; communication skills of clinician; degree of integration of healthcare system; the health care system itself; clinician failure to follow treatment guidelines; physician doubt of efficacy of treatment; physician doubt of their ability to treat successfully; attitudes toward seriousness of disease; physician reaction at time of diagnosis; “frustrations toward diabetes”; physician lack of knowledge re recent evidence-based guidelines; physician uncertainty re when to start insulin; clinician’s lack of knowledge re patients’ psychological well-being; physician receipt of feedback re performance

Health care system factors physicians expected to address too many issues in too short a time frame, 10 to 15 minutes (in 136 addition to diabetes care, patient

complaints, medication

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators management, preventive activities); 75% of diabetes patients receive care only from the primary care provider; physician lacks time to address emotional, psychological, social, behavior issues affecting patient’s ability to manage diabetes; use of automated reminder systems; use of flow sheets and checklists; level and frequency of feedback Walker, Smalls, Systematic review Examine whether lower socioeconomic status, Social determinants Campbell, social determinants of financial distress, community may influence diabetes Williams, & Egede, Adults 18+ with health have an impact disadvantage, educational outcomes through an 2014 diabetes on health outcomes in attainment, depressive symptoms, impact on glycemic United States - type 2 diabetes. low health literacy, acculturation, control Impact of social English race, health beliefs, social isolation,

determinants of trust in health care services, food Based on the studies Study measured one health on insecurity, low neighborhood SES, reviewed, social of five outcome outcomes for type health care access, technology, determinants have an measures: glycemic 2 diabetes: a insurance coverage for impact on glycemic control, LDL, BP, systematic review complementary and alternative control, LDL, and blood quality of life, cost pressure to varying medicine, expense of medication, comorbidities, “hassles in self- degrees. 2,1110 articles management,” impoverished identified More investigation into environment, involvement of 61 reviewed based other domains needed community health workers, use of on inclusion criteria structured patient/physician self- More research needed Study designs: cross- monitoring program, integration of

137 on the effect of SDOH sectional, “safety net” medical homes with on diabetes outcomes retrospective clinical pharmacy services, Medical (e.g., A1c)

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators cohort, randomized- Assistance Program, diabetes controlled trials, education, care received in primary Need to clearly define path analysis, mixed care network vs. medical center, SDOH of interest methods, pharmacist involvement in and ensure that prospective cohort, titration, “energy and mobility,” measure is being used quasi-experimental high out-of-pocket medication in studies costs, problem-solving skills, Further explore impact Sample sizes ranged diabetes of neighborhood from 30 to 148,846 environments education, receiving food stamps, race and sex, “support resources” Use SDOH evidence in developing national health policies

SDOH - poorly defined terminology and fundamental categories Whittemore, Theoretical and Discuss current diabetes education, socioeconomic Articles suggests Melkus, & Grey, literature review challenges related to status, education, discrimination, several strategies for 2004 obesity and type 2 stigmatization, lack of economic undertaking diabetes and to and social resources, modern community-level Applying the Social present the social technology and contemporary health promotion. Ecological Theory ecological theory as a culture foster sedentary lifestyles, to Type 2 Diabetes framework for the ex- abundance of high-fat and high "Health is not Prevention and pansion of the reach of calorie food; abundance of fast deliverable; it cannot Management diabetes prevention food enterprises, large portions, be given to anyone. and management advertising; neighborhood living What can be done is to relevant to community conditions, available resources set up the conditions

138 health nurses (e.g., pharmacies, banks, that optimize health"

supermarkets, exercise facilities), (Duhl,, 1996, p. 261).

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators high priced markets in low-income areas, more liquor stores in low- income areas, crime, violence, social doctors, knowledge, skills, beliefs, attitudes, self-confidence, institutional influences (e.g., health promotion programs at places of employment, worksite smoking policies, cafeteria food choices, food labeling, etc.); churches, especially in the African American community; school environment, community-level health interventions, public policy (e.g. tobacco control, highway safety, food labeling laws, et al.), Wilkinson, Systematic review Identify issues that communication skills of provider Main factors affecting Whitehead, & of qualitative influence ability to self- and patient, respectful self-management: Ritchie, 2014 studies using Joanna care for adults living communication and trust (i.e. communication, Briggs Institute with diabetes types 1 acknowledgement of feelings, education, personal Factors influencing approach and meta- or 2. rights, traditions, wishes), diabetes factors, provider the ability to self- aggregation education, providers who “go out issues, support manage diabetes of their way to care for them,” lack for adults living 1,739 studies of support from significant others, Multiple barriers with type 1 or 2 identified education of significant others re influence day-to-day diabetes 37 qualitative diabetes factors, individual management studies reviewed adaptability, learning experiences, personal beliefs, psychological “People living with MeSH terms: factors, discrimination, language diabetes face many 139 Diabetes mellitus, barriers, consistency of message, issues in their day-to-

type 1 and 2, adult, applicability of advice to daily life, day management of

Author, Year, Title Method Purpose/Phenomenon SDOH Variables Implicated in Conclusions/Results of Interest Health Management Barriers/Facilitators decision making, dietary advice, recognition of the disease, education, ethnic cultural and personal preferences, compounded by groups, guideline types of “learning experiences” vulnerability to wider adherence, patient (e.g., experiential, vicarious, situational, cultural and acceptance of didactic, naïve experimentation, social issues. Self-care health care, patient proactive learning, fear of ability is a dynamic, compliance, patient complications and shared evolutionary process participation, experience); spiritual, cultural, and that varies from person patient satisfaction, illness beliefs; fatalism, cultural to person and involves patients, personal views of obesity, physical moving from a disease autonomy, self-care symptoms, comorbidities, poor focused existence to and self-efficacy. vision, hearing problems, cognitive maximizing life” Plus barriers, impairment, fatigue at work, (p.111). facilitators, self- decreased physical and social management functioning, side effects of medication on sexual lives, financial limitations (affecting many things: ability to purchase healthy food, supplies for blood glucose monitoring medications, shoes, transport, childcare, et al.), care giving for others, access to healthcare, access to consistent healthcare clinician, lack of clinician time, inappropriate scheduling of appointments, physician not knowing a patient’s history and background, appointment times too short 140

Finally, Table 9 below presents a listing of individual empirical studies as well as systematic and literature reviews

exploring the experiences of specifically African Americans and, in some cases, other minority populations.

Table 9. Social determinants of health/diabetes – barriers and/or facilitators to self-management – African American samples or subsamples

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Anderson, Barr, Qualitative Identify issues that integrating regimen into lifestyle Edwards, could serve as (diet, exercise, medication) Funnell, 4 focus groups topics for a series of importance of cultural traditions Fitzgerald, & educational videos associated with food in Black Wisdom, 1996 34 Black adults in portraying community Detroit area with psychosocial issues coping strategies to manage stress Using Focus diabetes of urban Black importance of early diagnosis and Groups to individuals with education Identify diabetes. need to know signs, symptoms, Psychosocial complications Issues of Urban working through stages (denial, Black anger, depression, acceptance in Individuals With taking control) Diabetes knowledgeable and emotionally supportive family and friends so that support is appropriate importance of speaking up, asking questions, expressing feelings and points of view

141 good match between patient and physician

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) denial of diabetes and its seriousness role of religion role of folk medicine and home remedies danger of fatalistic attitude and passive acceptance organizational, time management, self-discipline skills needed for self- care importance of caring for patients as human beings difficulties losing weight negative associations with insulin injections important role of friends familiar with diabetes feelings of suspicion, hostility, toward healthcare professionals anxiety receiving different info. from different healthcare providers culturally inappropriate education programs/materials et al. Bhattacharya, Qualitative Qualitative study patients doubted they could make diabetes self-management is 2012 explored the necessary lifestyle changes; felt often associated exclusively Personal interviews underlying incompetent to make changes with following guidelines for Psychosocial psychosocial factors unaffordable places to exercise lifestyle changes and Impacts of Type African American and conditions that “disconnect” between reality of described in terms of 142 2 Diabetes Self- adults with may influence type lives and required exercise individual responsibility.

Management 2 diabetes guidelines Nonadherence is framed as an

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) in a Rural diabetes from the (diabetes) self- fear of being on meds for whole entirely personal failure. Our African Arkansas Delta management life; study provides critical American n = 31 (15 males, among adult would always be a “sick person” information from the real-life Population 16 females) diabetes diagnosed feelings of inevitability experiences of diabetes African Americans fear of loss of limbs and blindness diagnosed African Americans, in the Arkansas ambivalence about family support both men and women, namely Delta. feelings of being alone the barriers they themselves distrustful of disclosing diabetes identify to following diabetes (1) examine adult status to peers management guidelines. By African churches central to lives of many listening to the participants’ Americans’ African Americans narratives, we gained psychological states believed that church should not meaningful insights into social and emotional have any supportive role to play in cultural and historical feelings upon first diabetes management influences upon their self- learning their sharing diabetes with church determination and their diabetes diagnosis members would violate church motivation to self-manage (2) discover from sanctity and they would feel guilty diabetes. their feelings of helplessness; “why did I narratives the get this when I follow God?” Article discusses specific challenges they lacked belief that making lifestyle strategies for developing encounter in changes would benefit them diabetes self-management following the generally trusted doctors but not guidelines and interventions. guidelines for the medical care system lifestyle changes in uncomfortable giving personal terms of diet, family health history physical exercise, fatalistic attitude upon diabetes and medication. diagnosis belief in food and dietary patterns they practiced since childhood 143 importance of storytelling and

intergenerational oral histories to

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) preserve collective spiritual practices, values, traditions, histories belief that dietary and exercise guidelines were impractical and not culturally relevant to them Bhattacharya, Qualitative Qualitative study spirituality important in lives of AA, “The participants’ narratives 2012 explored the helps them cope with experiences disclosed the importance of Personal interviews underlying of slavery, racial prejudice, spirituality in AA life. Churches Spirituality and psychosocial factors discrimination guided their personal life Type 2 Diabetes African American and conditions that spiritually guides life goals goals. Their personal Self- adults with may influence type perceptions of health, illness, perceptions of health, illness, Management diabetes from the 2 diabetes behavior tied to spiritual practices and health behaviors were Among African Arkansas Delta (diabetes) self- and beliefs tied to their spiritual practices Americans in the n = 31 (15 males, management believe that God is a “healing and beliefs. Within this broad Arkansas Delta 16 females) among adult resource”; prayer is central worldview, three specific diabetes diagnosed fatalistic attitudes toward diabetes themes emerged from our African Americans (“Left it to God”) participants’ narratives: 1) in the Arkansas God has most responsibility to spirituality, religion, and Delta decide health issues relationship with God; 2) role not taking care of body goes of church in diabetes contexts; against scripture and 3) health illness beliefs church should not play supportive and link to God,” (p. 475) role in diabetes management depressed: follow God’s will but got diabetes anyway feelings of helplessness

Clochesy, Qualitative Exploration of having to wait beyond what is Participants want health care 144 Gittner, 11 focus groups barriers to reasonable time for the doctor or providers to know them, know

Hickman, healthcare as other provider their situation, do not rush

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Floersch, & “Medically and perceived by feeling rushed by doctor during through an office visit, who Carten, 2015 socially members of encounter list, who conduct a “human to disenfranchised medically and treated like their time not as human” interaction, who Wait, won’t! groups”: African socially important as that of doctor provides treatments that Want: barriers Americans (20), disenfranchised waiting acceptable – not being told “work for them.” to health care as Hispanic/Latino communities. about it is not; waiting was endured perceived by (15), LGBT (21), if the provider respected the Participants also want: simple, medically and Russian immigrants patient’s time understandable choices; socially (4) provider should be courteous, fair, streamlined bureaucracy; disenfranchised equitable with time to discuss affordable healthcare and communities n = 60, 28 women personal health issues insurance and 32 men, living won’t take med that makes them in Northeast Ohio sick won’t go to provider or hospital who doesn’t respect them won’t put up with bureaucracy, red tape, paperwork, strict enforcement of rules dislike labyrinth of rules to navigate to get care dislike being “shuffled” from one doctor to another feeling dehumanized, not getting clear answers judgmental providers, provider bias want to be known by the doctor or system, including knowledge of previous healthcare records 145 want long-term relationship with

doctor or healthcare system

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) want doctor who knows about the patient’s family, home life, work situation want to build doctor/patient partnership want to feel truly cared for by the doctor/provider doctor who listens and provided needed information want open communication with doctor want to be able to trust doctor and system want provider to follow through Cagle, Appel, Qualitative Explore perceptions family is core, prioritized; Family is core – women Skelly, & Carter of African American participants function as matriarch prioritize family over Edwards, 2002 Focus group women re work, the and leader of household themselves; wish to maintain multicaregiver role, problems with working for lead role of the family; family Midlife African n = 12 midlife and the survival, stress came first even when support American African American management of stress of not working because of not received from them; did Women With women with diabetes diabetes not wish to become Type 2 Diabetes: diabetes tied to pressures of work and dependent on family; working Influence On family; competing responsibilities for these woman was a matter Work And The preservation of self through of survival (half were major Multicaregiver introspection, spirituality, church breadwinners) Role feeling indebted to colleagues, community, work ethic public assistance limited relative 146 to living expenses

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) not fully understanding insurance coverage or changes in Social Security, Medicare, Medicaid diabetes restricts care giving role fatigue, neuromuscular weakness, vision problems, body weakness, dizziness, anxiety limited finances time required to manage diabetes average of 6 daily roles: mother, partner, worker, family chauffeur, cook, community/church member continued cooking “traditional African American foods” for family making daily self-care a routine fear of complications, problems that come with getting older strong religious connection to church and bonds with supportive females selectively shared diabetes only with trusted others, not with coworkers not wanting to be judged by others physicians concerned only with A1c not life factors that would improve self-care feelings of discrimination – sex, 147 race, lack of understanding of

interactions of race, sex, disease

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) need to appear “not sick” refusal to allow diabetes to identify them belief that God would make them well if they were strong

Chesla, Fisher, Quantitative Specify features of family world view Unresolved family conflict Mullan, Skaff, family life that are family emotion management about diabetes statistically Gardiner, Chun, African Americans, associated with family conflict significantly related to more & Kanter, 2004 25 to 70 years old, disease negative family emotional tone depressive symptoms and with diabetes management in belief that life has order meaning lower DQOL (diabetes quality Family and with identifiable African Americans and can be managed of life) Disease family health with type 2 family coherence Management in partner who was diabetes. sense of family closeness and No associations apparent African either a spouse, social sharing between unresolved family American primary relative family’s belief system conflict and diabetes Patients With (parent, sibling, management behaviors Type 2 Diabetes child), or someone the patient Unresolved family conflict considered family may produce emotional arousal, resulting in deleterious emotional and endocrine responses for patients with long-term risk for diabetes regulation. Chlebowy, Qualitative Identify facilitators support from family, peers, Hood, & LaJoie, and health care providers 2010 38 African barriers to self- fear of glucose monitoring American adults management of lack of self-control 148 Self- with diabetes type 2 diabetes memory failure

management of receiving care at 1 mellitus among

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Type 2 Diabetes of 3 health care urban African perceived lack of control over Among Urban agencies in American adults. diabetes African midsized city in expense of food American Adults southeast U.S. “bad” taste of low-fat, sugar free Focus Group foods Findings 27 women, 11 men difficulty understanding food labels lack of provider empathy lack of knowledge lack of motivation cultural tradition lack of affordable and accessible restaurants, stores, and recreational facilities cost of medication and supplies managing other chronic conditions relentlessness of living with diabetes every day complexity of management stress fear powerlessness presence of daily routine knowledge about diabetes not enough time in day pain associated with blood glucose monitoring Davis, Pope, Qualitative Examine how 20 positive agency, capacity for “Most of the interviewees Mason, Mixed methods African Americans decision making have not linked knowledge Magwood & Combination with type 2 diabetes negative emotions and fears with psychosocial mediators, 149 Jenkins, 2011 “positioning make beliefs about diabetes and are at the mercy of their

attitudes, family, friends beliefs and attitudes, not

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) “It’s a Wild theory” and sense of the always related to biomedical Thing, Waiting “stance analysis” practices that led to explanations,” p. 415. to Get Me” recurrent Stance Analysis n = 20 African emergency of African Americans with department visits to Americans diabetes identify needs for With Diabetes 12 female, 8 male more effective intervention. Dawson, Cross sectional Investigate perceived racial discrimination Association between Walker, the influence of perceived discrimination and Campbell, & Black and White perceived racial health behaviors known to Egede, 2015 patients with discrimination on improve diabetes outcomes diabetes biologic measures Effect of (glycemic control, Association between perceived racial n = 602 blood pressure, and perceived discrimination and discrimination 65% Non-Hispanic LDL cholesterol), the the mental component of on self-care Black mental component quality of life (the MCS). behaviors, of quality of life glycemic Setting: 2 adult (MCS), and health Influence of perceived control, and primary care clinics behaviors known to discrimination may differ by quality of life in in SE US improve diabetes race adults with type outcomes. 2 diabetes. Perceived discrimination in Blacks associated with clinical outcome of systolic BP

Perceived discrimination in Whites associated with MCS and self-care behaviors 150

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Dolezsar, Systematic review Quantitatively perceived racial discrimination Small but significant McGrath, Herzig, evaluate the association between & Miller, 2014 Out of 32,651 association between perceived discrimination and articles, 44 met perceived racial hypertension Perceived racial inclusion criteria discrimination with discrimination hypertensive status Perceived discrimination may and and systolic, partly explain racial health hypertension: a diastolic, and disparities. comprehensive ambulatory blood systematic pressure. review.

Gallant, Spitze, Synthetic Review Integrate the beliefs about personal Self-care behaviors are but & Grove, 1010 (“not an literature on family responsibility re illness one category of many causal exhaustive, and social ties management determinants of chronic illness Chronic Illness systematic review”) among older ethnic knowledge of illness outcomes Self-care and the minority men and social networks Family Lives of Selected literature women with the “resilient, flexible, resourceful” Differences in self-care Older Adults: A literature on chronic “fictive kin” networks behaviors are partly Synthetic illness self-care socioemotional support from attributable to the fact Review Across among elders in friends that current approaches to Four Ethnic these groups church, religion, spiritual beliefs self-care have not adequately Groups cultural values and traditions incorporated cultural values (“strong cultural value on related to health and illness autonomy and independence; high management cultural value placed on giving support to others, reciprocity) cultural traditions related to spirituality, social support, non- 151 biomedical healing

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Gazmararian, Qualitative Explore individual, emotional distress (stress, Individual and systemic Ziemer, & 3 focus groups educational, and frustration, social isolation, barriers to patient self- Barnes, 2009 Sample: system barriers that interpersonal conflicts, depression, management identified “economically limit low-income fear, denial) Perception of disadvantaged diabetes patients’ having to make lifestyle changes Emotional impact of having barriers to self- patients with ability to achieve (e.g., preparing separate meals, diabetes – “overwhelmed” care diabetes” optimal diabetes eating only home-prepared meals, management “Mostly African self-management. no more eating out, eliminating More education needed re among diabetic American sample,” pies, cakes, and other pastries; monitoring blood glucose, patients n = 31, total n = 35 consuming more fruits and understanding of meaning of vegetables; avoiding sodas, having A1C numbers to monitor blood glucose regularly, et al.) “In conclusion, these focus not knowing risks and group discussions provided consequences of “asymptomatic” important information conditions regarding barriers to diabetes not understanding A1C management as well as follow-up diabetes refresher opportunities for improving courses care for underserved patients support groups with diabetes.” nutrition and medication education expanded clinic hour treatment of diabetes is “overwhelming” belief that having diabetes was “unjustified” and “unfair” belief that having to use insulin means their diabetes not under control 152 fear of having to use insulin

throughout life

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) having different work schedules (night shift vs. day shift) unsure what to do when feeling lightheaded succumbing to diet temptation weight gain on diabetic diet level of self-discipline use of media written materials (e.g., Diabetes Magazine, Prevention Magazine) choice of receiving diabetes information in different forms (“how to” videos, written, audio materials) Johnson, Elbert- Literature review Review the religious/spiritual beliefs: source of Spirituality is an important Avila, & Tulsky, literature on comfort, coping, and support part of African-American 2005 African Americans spiritual beliefs that God is responsible for physical and culture and affects treatment in any setting may inﬂuence the spiritual health preferences The Inﬂuence of treatment decisions the doctor is “God’s instrument” Spiritual Beliefs 577 initial citations of African only God has power to decide life Although identifying a and Practices on n = 36 Americans. and death common set of beliefs, the Treatment divine intervention and miracles individual differences exist Preferences of occur with regard to education, African spiritual beliefs and practices, socioeconomic status, age, Americans: A particularly prayer, are important sex, geographic location, Review of the they receive support from God acculturation with dominant Literature spirituality is the most effective culture way to influence healing there are prohibitions against Authors cautioned about 153 limiting life-sustaining treatments stereotyping all African

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) spirituality differences between Americans based on study physicians and patient findings. trust of the health care system access to care prior experiences doctor patient relationship Majeed-Ariss, Systematic review Elicit patients’ views self-identity “The findings provide insight Jackson, Knapp, of type 2 diabetes emotional outlook into what Black and minority & Cheater, 2015 Black and ethnic self-management response to living with diabetes ethnic people regard as the minorities, diabetes confidence levels barriers to, and facilitators of A systematic gender roles self-management, as opposed review of International cultural norms and beliefs to what health professionals, research into literature caregiving role policy makers and trial Black and family, social, and work roles researchers may have ethnic minority 57 studies perceptions of health professionals assumed” (p. 1). patients’ views n = 54 qualitative language/linguistics on self- n = 2 mixed method family support management n = 1 quantitative social stigma of type 2 beliefs, attitudes, knowledge of diabetes diabetes spiritual beliefs diabetes education experiences of others having role models knowledge, attitudes, behaviors re self-management, medication adherence, adherence to blood glucose testing fear of hypoglycaemia 154 causal belief

fatalism

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Moody-Ayers, Cross-sectional Explore the 95% percent of participants Results highlight the need for Steward, frequency and perceived societal racism awareness and understanding Covinsky, & 42 African correlates of gives rise to distrust of physicians (among physicians and the Inouye, 2005 Americans aged 50 perceived societal even if one does not experience health care system) of how and older with racism racism in the health system itself racism/discrimination in day- Prevalence and diabetes mistrust of medical system to-day life affect patients’ Correlates of reported emotional responses health outcomes and Perceived include: feeling strengthened, experience with the health Societal Racism angry, frustrated, sad, stressed, system. in Older powerless, and ashamed African- coping responses were active American Adults (speaking up) and/or passive with Type 2 (prayer, avoiding, ignoring, Diabetes accepting, forgetting, keeping it to Mellitus oneself Nam, Chesla, Systematic Review To summarize adherence less if on insulin Several patient factors may Stotts, Kroon, & existing knowledge unwillingness to take insulin if contribute to type 2 diabetes Janson, 2011 Included regarding various prescribed management: adherence, cross-sectional barriers of diabetes misperceptions re seriousness beliefs, attitudes, knowledge, Barriers to studies; management from attitudes and beliefs of patients ethnicity/ culture, language diabetes randomized clinical the perspectives of positive attitude results in behavior ability, financial resources, management: trials (RCTs); both patients and change comorbidities, Patient and observational clinicians belief in benefit of medications and social support. Seven provider factors studies and taking insulin means personal studies found that qualitative studies failure adherence to self- taking insulin is punishment for management are influenced 1454 initial failing to manage by an individual’s financial citations; analysis fear of injections resources, beliefs and based on 80 studies belief that taking insulin means life attitudes about the 155 more restricted disease, and effectiveness of

the treatment regimen. This in

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) General population belief that insulin will worsen the turn positively affected including disease glycemic control [12–17,42]. minorities, Blacks, relationship between knowledge Knowledge Hispanics, Mexican and behavior and outcomes alone, however, does not and Chinese inconsistent necessarily lead to good Americans culture, ethnicity, language adherence of self-care if other influence behaviors (diet, lifestyles, barriers still exist. pp. 5-6 traditional, and religious beliefs, beliefs about general health) Blacks more likely than Whites to report receiving support from family and friends spirituality and self-management deeply embedded in African American culture language and literacy barriers financial resources comorbidities depression rates twice as high for people with diabetes social support physician’s attitudes, beliefs, knowledge physician’s lack of knowledge about patients’ psychological well-being patient/clinician interaction and communication longer appointments, automated reminder systems, and flow sheets 156 and checklists improve diabetes

care

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Paradies, 2006 Systematic review Review population- self-reported racism Association exists between Quantitative based studies of self-reported racism and ill A systematic empirical studies self-reported racism negative effects on mental health health after adjustment for a review of n = 138 studies and health outcomes (i.e., emotional distress, range of commonly measured empirical 105 cross- depression, obsessive-compulsive confounders research sectional symptoms, somatization, anxiety, on self-reported 16 cohort stress), negative physical health 54% of health-related racism and 12 experimental outcomes (i.e., increased blood outcomes associated with health 5 case-control pressure/hypertension, infant low self-reported racism Study populations: birth weight/decreased gestational African American, age, heart disease, diabetes, Most consistent association White, Asian. increased body mass index, between self-reported racism Latino/a, cigarette smoking, alcohol (mis)use, and health was found for immigrant/refugees substance (mis)use) negative mental health indigenous outcomes 62% of health- related behaviors significantly associated with racism Pascoe & Meta-Analytic Synthesis of data perceived discrimination Perceived discrimination has Richman, 2009 Review relating perceived significant negative effect on Each article needed discrimination to a Types of perceived discrimination both mental and physical Perceived to report sufficient health outcome n = 125 racial or ethnic health. Discrimination data to calculate n = 29 gender and Health: A correlation n = 13 sexual orientation Perceived discrimination Meta-Analytic coefficient n = 21 unfair treatment produces significantly Review n = 192 articles n = 20 other or not specified heightened stress responses related perceived discrimination to Perceived discrimination health outcome related to participation in n = 134 of 192 unhealthy behaviors and 157 contained data for nonparticipation in health

meta-analysis behaviors

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators)

Peek, Odoms- Qualitative Explore patient Degree of shared decision-making African-Americans experience Young, Quinn, perceptions of how with physician, information- SDM less often than Whites, a Goraware-Bhat, n = 24 in-depth race may influence sharing, deliberation, decision- fact which may contribute to Wilson, & Chin, personal interviews shared decision making, race related issues racial disparities in diabetes 2010 making (SDM) (physician bias or discrimination, outcomes. 5 focus groups, n = between African- “cultural discordance”), trust issues Race and shared 27 American patients with White physicians, negative Race-related patient and decision-making and their physicians attitudes, internalized racism physician-related barriers may (SDM): African-Americans serve as significant barriers to Perspectives of over 21 with e.g. bias: “Less likely to share shared decision-making African- diabetes information re test results,” “more Americans with likely to be domineering with AA” diabetes e.g. AAs less forthcoming with physicians re health information, AAs more deference to physicians, AA less likely to adhere to treatment regimens Rahim-Williams, Semistructured, in- Explore and identify diabetes beliefs (e.g., if diabetes For African American women 2003 depth interviews health beliefs and “runs in the family,” other family the self-management regime and questionnaire health behaviors members will be diagnosed with necessitates modification of Beliefs, affecting diabetes diabetes”) models that consider only Behaviors, and Personal interviews self- management conception of the nature of an biomedically recommended Modifications of with African among African illness episode self-management lifestyles Type 2 Diabetes American women American women diabetes knowledge and behaviors. Self- aged 46 to 87 with type 2 diabetes beliefs (“diabetes comes management diabetes. with age or is genetic or you could “Self-management, while

158 Among African Participant be obese,” “if you get diabetes important, “is not static. Self- observation at 5 management needs to be

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) American self-management while pregnant it may go away later understood within the Women education classes in life”) mediating circumstances of a available support systems and woman’s life. This n = 25 African resources understanding is important American women access to care because patients are often with diabetes costs of medications, testing required to make complex supplies, et al. treatment decisions and vary fear of diabetes and its self-care behavior from complications (“It’s a curse”), social situation to situation,” p. 212 support (family and friends) access to free glucose monitoring More similarity than supplies dissimilarity among the education classes women in self-management having an exercise partner beliefs and behaviors and the patient physician relationship factors affecting self- safe neighborhood in which to management. exercise comorbidities (pain, neuropathy) religion and spirituality diabetes education self- management class Robinson & Secondary research The objective was poverty Positive relationship between Cheng, 2014 to examine the income inequality socioeconomic/structural National data set: relationships educational attainment determinants and health Exploring National Survey of between environmental factors outcomes of African Physical Health American Life socioeconomic, discrimination Americans. of African (NSAL) structural, poor housing Americans: community, and food insufficiency Empirical evidence supports A Social National household individual factors poor working conditions the hypothesis that there is a 159 Determinant probability sample and health neighborhood characteristics positive relationship between

Model outcomes of African socioeconomic structural

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) of U. S. adults 18 Americans in the community connectedness, social determinants and health and over United States using capital outcomes of African a modified self-esteem Americans. Results show poor n = 2,926 African version of the social depression housing and low income Americans, ages 18 determinants of “John Henryism” [“… a style of contribute to poorer health to 64 health model in a strong coping behaviors used by outcomes; therefore, in order nationally many African Americans to deal to improve the health representative with psychosocial and outcome, programs are sample of 2,926 environmental stressors such as needed that provide their non-elderly African career issues, health problems and residents with adequate American adults. even racism. The classic traits of JH and safe housing and are seen among those African employment. Moreover, local, Americans who are extremely state, and federal preoccupied with success, governmental entities need to particularly in new environments work together to rebuild and with which they have little revitalize the housing in experience” Duke Medicine African American Webpage] communities. negative expectations stress poor mental state poor coping skills income-to-need ratio crime public housing education occupational skill level comorbidities Samuel-Hodge, Qualitative Identify culturally spirituality “Our findings suggest that 160 Headen, Skelly, relevant multi-caregiver responsibilities influences on diabetes self-

Ingram, psychosocial issues general life stress management

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Keyserling, 10 focus group and social context psychological factors (feelings of behaviors of African-American Jackson… & interviews variables influencing deprivation, physical and emotional women may be best Elasy, 2000 lifestyle behaviors-- tiredness, worry, fear of understood from a 70 southern African specifically diet and complications) sociocultural and family Influences on American women physical activity--of context. Interventions to Day-to-Day with diabetes southern African- improve self-management for Self- American women this population should Management of with diabetes. recognize the influences of Type 2 Diabetes spirituality, general life stress, Among African- multi-caregiving American responsibilities, and the Women psychological impact of Spirituality, the diabetes. These findings multi-caregiver suggest that family-centered role, and other and church-based approaches social context to diabetes care interventions factors are appropriate.” p. 928 Seawell, Hurt, & Qualitative Explore influence of stress “… results revealed the Shirley, 2015 stress, gender, and pessimism re ability to manage existence of significant stress Focus groups culture on diabetes diabetes and some pessimism with The Influence of n = 20 Black men prevention and family support respect to perceived ability to Stress, Gender, management relationship with health provide prevent and manage diabetes. and Culture on among Black men fatalism The participants made it clear Type 2 Diabetes “legacy”/family members with that, while their families are Prevention and diabetes primary sources of support for Management poverty managing stress, including Among Black childhood experiences (“as children diabetes, they can also be a Men: A directed to eat everything on their source of stress, particularly Qualitative plates”) with respect to parenting. 161 Analysis diet and culture (“soul food”) Black men had mixed opinions

on their relationships with

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) inaccessible and/or unaffordable respect to their health care healthy foods providers; some had positive, caregiving for multiple generation long-standing relationships family members while others little control over household reported little or no schedules and food choices relationship with their stress associated with finances providers. In response to life stress, Black men reported experiencing inadequate and disrupted sleep as well as consuming too much alcohol at times. Some of the participants reported engaging in physical activity to manage their stress.” (p. 928) Sellers, Bonham, Cross sectional Examine the effects racial discrimination Data indicated an inclination Neighbors, & survey of college- of racial toward a negative relationship Amell, 2009 educated African discrimination and between racial discrimination American men health-promoting and mental health. Encourage Effects of racial Quantitative behaviors on the the design, development, and discrimination Members of physical and mental implementation of a “racism and health historically Black health of a sample over the life course” behaviors on national fraternal of 399 well- instrument. mental and organization educated African physical health n = 399 American men. of middle-class AA men Sherman, 2015 Qualitative Explore and church-related support Diabetes self-management understand how the wellness communities may be facilitated by 1

62 We’ve come this Personal interviews church, faith, and health ministries incorporating the spiritual

far by faith: with 19 African spirituality plays a prayer, faith, “God is in charge”

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Faith and American men, 35 role in type 2 God provides strength and beliefs and virtues of AA men spirituality as a to 69 years of age diabetes encouragement in managing living with the illness. facilitator to management diabetes self-care among African- use God to help manage or let God Some participants declined to management of American men take total control belief that “only discuss religion and type 2 diabetes God has the power to heal” spirituality. For some the among African- church/spirituality does not American men play a part in managing diabetes. Sherman, Qualitative Explore, understand beliefs about diabetes etiology AA men perceived their McKyer, Singer, and describe the family history and/or own personal experience of managing type Larke, & Guidry 19 African lived experience of behaviors (diet, health behaviors, 2 diabetes as tedious, 2014 American men 35 African-American eating behaviors, tobacco, alcohol), complicated, demanding, and to 69 years of age men living with type others in family or friends have frustrating. Understanding with diabetes 2 diabetes, diabetes the essence and with emphasis on fears about long-term effects of Social support from family and lived experience Reside in southern capturing diabetes, kidney failure, vision friends provided critical of self-care state, U. S. perceptions of problems, sexual dysfunctions; encouragement and support management challenges, belief that insulin shots serve as toward managing their among African- Personal individual facilitators and indicator of disease progression diabetes American interviews perceived barriers belief that managing diabetes is men living with associated with self- difficult type 2 diabetes care management formal diabetes education seeing others effectively managing diabetes support network Spruill, Interpretive Gain an spirituality Themes: Magwood, qualitative study understanding of acknowledgement or denial “as acceptance/acknowledgement Nemeth, & the colloquial coping mechanisms through an of diabetes (“front seat 163 Williams, 2015 5 focus groups phrase “I ain’t active or passive relationship with driver”) vs. denial (“back seat

claiming it,” used driver”), terms used to

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) African 3 informant among Gullahs of God” lack of resources such as describe self-management of Americans’ interviews South Carolina testing supplies, insulin, medication diabetes Culturally n = 52 when discussing lack of knowledge regarding Specific Adult African diabetes care and causation of diabetes Denial = God is major actor, Approaches to American men and management (i.e., lack of knowledge re how to attribute positive outcome to the women (18 to 75) descendants of prevent complications of diabetes God, back seat rider, yields Management of (Gullahs of South enslaved Africans authority to God Diabetes Carolina – Blacks living on the cost of with distinct South Carolina) Acknowledgement – African-origin partnership with God, person language) with diabetes is the major actor, active participant, God in background

Spirituality is present in every aspect of life – “culturally specific coping behaviors” Tang, Brown, Cross-sectional, Examine social satisfaction with support Social support plays a role in Funnell, & observational support and its positive support behavior predictor diabetes-specific quality of life Anderson, 2008 design relationship to for healthy eating and exercising and self-management 89 African diabetes-specific negative support behavior a practices. Social support Social support, American adults 40 quality of life and predictor for not taking medication encompasses multiple quality of life, years of age and self-care behaviors as recommended dimensions that differentially and self-care older diagnosed in African physician primary support followed influence specific diabetes behaviors with diabetes Americans with type by spouse or other family member health-related outcomes and among African 2 diabetes. behaviors. Americans with type 2 diabetes Utz, Steeves, Ten focus groups Describe the inability to find diabetes specialists Addressing health disparities 164 Wenzel, Jones, 3 rural experience of self- costs such as the high incidence of

& Muphy, 2006 communities managing type 2 support type 2 diabetes among people

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) n = 73 diabetes among information of color requires that “Working Hard 42 women; 31 men rural dwelling coping strategies healthcare providers tailor With It” Self- African Americans; use of close-knit networks among care to the lives and management of identify barriers to kinfolk, friends, church groups understandings of their Type 2 Diabetes self-management; prayer, religion patients. Results of this study by Rural African et al. use of complementary and reinforce the importance of Americans alternative therapies offering diabetes education that is culturally tailored to recipients. Unique life experiences of African Americans in rural areas require diabetes education and support consistent with those needs. Wagner, Cross sectional Investigate the racial discrimination Self-reported racial Tennen, & relationship discrimination was associated Osborn, 2015 Quantitative between self- with continuous glucose in reported exposure women with type 2 diabetes. Self-reported to racial discrimination, discrimination and diabetes n = 37 African continuous glucose Some effects of discrimination distress, and American levels and variability on glucose cross racial lines. continuous n = 37 White among Blacks and “In the US, Blacks virtually blood glucose in Whites; test always report higher levels of women with whether Diabetes discrimination than other type 2 diabetes. Distress mediated racial and ethnic groups do, this relationship but the relationship between discrimination and outcomes is not exclusive to Blacks,” (p. 165 750).

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) Wanko, Brazier, Quantitative Determine physical 52% reported that they had a “Recognition of patient Young-Rogers, activity preferences barrier to exercising exercise preferences and Dunbar, Boyd, Cross-sectional and barriers to difficulty exercising because of pain barriers should help in George, Rhee, exercise in an no will power developing exercise strategies El-Kebbi, & n = 605 urban diabetes health not good enough for improving glycemic Crook, 2004 89% African clinic population “don’t know what to do” control.” p. 2004 American “no one to exercise with” Exercise 44% Male no convenient or close place to Preferences and exercise Barriers no safe place to exercise in Urban African beliefs about importance of Americans With exercise Type 2 Diabetes Williams & Literature review Provides a review perceived discrimination and racial “The research on Mohammed, and critique of disparities are stressors linked to: discrimination and health is 2009 Minority empirical research multiple forms of violence (e.g., continuing to grow rapidly. populations on perceived intimate partner violence and Although the discrimination Discrimination discrimination and violence among adolescents), poor variable has been and racial 5,107 articles health mental health status (anxiety, operationalized in a variety of disparities in initially identified depression, behavior problems and ways, the consistency of an health: evidence n = 115 articles rebelliousness in teens, feeling inverse association between and needed threatened, anger, distress, discrimination for an research Study samples burnout, low quality of life, self- increasingly broad range of included variety of esteem, psychosis, PTSD symptoms, health outcomes, across minorities, low self-esteem, internalizing multiple population groups in primarily Black problems, suicidal ideation), a wide range of cultural and hypertension risk, physical health, national contexts is cardiovascular reactivity, low birth impressive, and lends weight and prematurity, nutritional credibility to the plausibility of 166 risk, hemoglobin A1c, breast perceived discrimination as an

cancer incidence, fatigue, sexual important

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) problems, access to healthcare, emerging risk factor for mammography screening, receipt disease.” p. 39 of health tests (cholesterol, eye exam hemoglobin A1C, flu shots), Multiple ways discrimination delay of treatment, refraining from and racism affects health. seeking treatment, substance use (alcohol, tobacco, marijuana, other illicit drug use), HIV risk behavior, residential segregation, internalized racism, differential access to goods and services, et al.

Xanthos, Review Consideration of the low socioeconomic status Significant health disparities Treadwell, & social determinants racial discrimination of African American men Holden, 2010 of health among incarceration compared to rest of U. S. African– American stress population Social men highlighting alcohol disproportionately determinants the serious health marketed in Black census tracts Disparities can be attributed of health among disparities among neighborhood characteristics to social and environmental African– this population in lack of recreational facilities factors affecting this American men relation to health worry about personal safety population including reduced status, health reduced access to goods and access to quality health care behavior, and services health care assumptions made by physicians reduced access to health care (including mental health services) 167 lack of cultural competency and

diversity in healthcare workforce

Author, Year, Method Purpose/ SDOH variables linked with health/ Conclusions/Results Title Phenomenon of diabetes management Interest (barriers/facilitators) physician medication prescribing practices

168

These several tables above present a composite of the variables involved in determining health and illustrate the complexity of the interactions involved. These findings are illustrative only. The variables listed the tables span the five domains previously discussed; i.e., intrapersonal (e.g., beliefs, health knowledge, socioeconomic status, poverty), interpersonal (e.g., social support, doctor/patient relationship and communication), institutional (e.g., coordination and continuity of diabetes management, health provider knowledge of patients’ cultural background ), community

(e.g., green space, food security, crime), and public policy (e.g., taxation policies, banking laws, effects of fracking, inequitable distribution of environmental hazards, unemployment rate).

The intent here was to summarize and provide an overview of the SDOH literature, not to offer support for evidence-based practice (Kysh, 2013) or an exhaustive meta-analysis of findings. Additionally, because diabetes is inextricably linked with general health status and a number of comorbidities (as discussed at length elsewhere), the summary tables include articles exploring influences of SDOH on health in general as well as influences on the management of diabetes specifically.

Most SDOH more or less affect all individuals at some level, but many factors are specific to disadvantaged “socially disenfranchised” populations such as African

Americans (Clochesy, Gittner, Hickman, Floersch, & Carten, 2015; Gittner, Clochesy,

Gutierrez, & Robinson, 2015; Bhattacharya, 2012). Four factors, in addition to low socioeconomic status, appear to play a prominent role in the management of diabetes

169 in the African American community: religion and spirituality (see, for example, Johnson,

Elbert-Avila, & Tulsky, 2005; Levin, Chatters, & Taylor, 2005), the multiple caregiving roles of African American females (see, for example, Bennett, Sheridan, & Richardson,

2014; Samuel-Hodge, 2000), Black culture (see, for example, Zeh, Sandu, Cannaby, &

Sturt, 2014; Tripp-Reimer, Choi, Kelley, & Enslein, 2001), and, most significantly, racism, discrimination, and neighborhood segregation (see, for example, Dawson, Walker,

Campbell, & Egede, 2015; Williams & Mohammed, 2009).

Clochesy, Gittner, Hickman, Floersch, and Carten (2015) conducted 11 focus groups with 28 women and 32 men from Northeast Ohio to explore barriers to healthcare as perceived by “medically and socially disenfranchised communities” (p.

174). Their sample consisted of 20 African Americans, 15 Hispanic/Latino, 21 lesbian, gay, bisexual or transgendered individuals, and 4 Russian immigrants.

The respondents discussed three types of barriers at the “systems” level: the perceived cultural competence of health care staff (including their physicians), interactions with their physicians, and issues with the “bureaucratic” nature of “the system.” They identified issues involving “waiting” (e.g., for appointments, for tests, for diagnosis, for the doctor, et al.); “wanting” (e.g., trustworthiness of providers and healthcare systems, physicians who knew them and understood their particular situation; respect; not being rushed through a visit; physician who listens and knows their history, needs, and goals; human-to-human interactions; et al.), and “won’t!”, situations in which they would not participate in further treatment and/or remain with their physician (e.g., feeling disrespected, being judged, feeling like a “lab rat,” being

170 “treated differently,” being rushed, et al.). The findings of this study were compared to those found in the present study because of the similarity of the samples (all characterized as “socially and medically disenfranchised” minorities living in Northeast

Ohio) and methodology (qualitative analysis and convenience sampling).

As will be discussed in detail below and in Chapter Six, the analysis offered herein builds on the above work because it explores diabetes self-management in the context of both the office visit and the patients’ personal reflections made during the follow-up interviews. The results provide a useful exploration, then, not only of barriers patients face in their day-to-day lives but also the barriers the physicians and patients face together trying to manage diabetes during a 20-minute routine office visit demanding attention to other health and well-being issues, social factors playing no small role in increasing the complexity level.

171 Chapter Five: Study Results

Introduction

In review, the results presented in this section are based on data collected for a study conducted by Bolen et al. (2015) that explored the delivery of diabetes treatment services in a primary care setting. The qualitative data for this project were collected from African American, economically disadvantaged adults with diabetes receiving health care at an outpatient clinic of a large, metropolitan safety-net health system in the Northeast. Field work consisted of observing and recording 15 medical encounters

(visits with a physician) and 15 follow-up personal interviews with the patients and the 4 participating physicians.

The findings have been gleaned from the typewritten transcripts of each patient’s medical encounter with her/his physician and from subsequent personal interviews. The sample consisted of 11 females, 4 males. The mean age of the participants was 60, with a range of 45 to 75. The mean length of the medical encounter was 31 minutes, ranging from 18 to 49 minutes; and the mean length of the personal interviews was 78 minutes, ranging from 49 to 138. The medical encounters involved four physicians: 3 females and 1 male. The physicians had been practicing an average of

20 years, and they had been in the Clinic’s healthcare system for an average of 18 years.

Only one had worked for/in hospitals other than the study healthcare system.

The primary purpose of the Bolen study was to examine the influence of competing demands and opportunities on diabetes care, cancer screening, and overall patient care on the conduct of a routine, follow-up medical encounter (visit). A

172 secondary aim of the Primary Investigator (PI) was to understand how, when, and why a

physician makes medication intensification decisions. The analysis presented here was

prompted by and is based on unanticipated findings of the initial study which revealed

not only the significant influence of SDOH in the treatment and self-management of

diabetes as well as other physical and mental health issues but also the intricate, ingenious, and nuanced “work-arounds” or strategies both Physicians and patients used

to mitigate or overcome these SDOH obstacles.

It is important to stress here that the Bolen study work sheets, data

management forms (e.g., coding sheets, respondent selection procedures,

questionnaires, et al.), as well as logistical decisions, were designed to address the

Primary Investigator’s principle goal: To discover “what happens” during a medical visit that affects a physician’s treatment and management of diabetes, specifically,

medication intensification decisions. That is to say, the data used in this analysis were

generated from a study that did not specifically set out to explore, from the patient’s

point of view, the barriers and facilitators involved in managing diabetes. It is likely that

questionnaires and interview guides designed solely for this purpose may have elicited

different and/or more expansive discussions.

That being said, however, it can also be argued that because SDOH issues

emerged from the visits and interviews in a serendipitous fashion and were, in a sense,

“unaided,” the findings presented here offer a somewhat “unbiased” or more “true to

real life” picture of how patients and physicians define, describe, and experience the

effects of SDOH on the treatment and self-management of diabetes.

173 The SDOH factors affecting health and diabetes management discussed below reflect the “flow” of the office visit and the discussions held between the physician and patient during its course. The personal interviews conducted later not only largely mirrored the issues discussed during the office visit, but also included the patients’ more extensive comments and descriptions of their attempts to manage diabetes and health in general in the context of their everyday lives. These SDOH issues, then, necessarily reflect the types of concerns typically “covered” during a follow-up Physician’s office visit; i.e., medication management, acute health issues, health screenings, review of tests already taken and those required (e.g., A1c).

In summary, the results presented below focus on SDOH as they relate to the following major themes emerging from the data. These data reflect the theory informing this project, as presented in Chapter Two: Historical family and cultural background (e.g., diet, beliefs); comorbidities and acute issues; intrapersonal issues

(e.g., work status, leisure time activities, insurance, economic, occupation, transportation); patient beliefs, attitudes, and knowledge; patient behaviors with regard to diet, exercise, blood glucose monitoring, medication adherence, foot care, eye care, regularity of seeing the Physician, regularity of health screenings, et al. ; patient psychological factors (e.g., stress, coping skills, self-possession, self-control, et al.); physician factors (e.g., patient education, resource facilitator, “bedside manner,” knowledge of patient as whole person, et al.); clinic and medical center factors (services offered, personnel, location, personnel, processes, and procedures); medication management (e.g., review and reconciliation, side effects, affordability, et al.); co-

174 ordination of care issues; information availability and sharing (e.g., the role of Electronic

Medical Records (EMR), patient education, sharing test results, et al.); the role of interpersonal relationships (e.g., spouse, family, work colleagues, significant others); other institutional factors (e.g., religion, popular culture, media, healthcare system); community (e.g., resources, green space, access to food and exercise, safety); and public policy issues (e.g., insurance policies, healthcare funding, et al.).

The reader is invited to consider the following caveats in reviewing the results below.

First, the above variables are not always and necessarily either barriers and/or facilitators. In some cases, a variable could be both (e.g., public policy programs).

Nevertheless, for reporting efficiency and clarity several sections below are designated as either “barriers” or “facilitators.” Closer readings of the office visits and interviews, however, suggest that a far more complex web of variables, beliefs, processes, and strategies are involved in treating and managing diabetes than can be captured in the discrete designations of “barriers” and “facilitators.” While some factors were clearly and unarguably “barriers” (e.g., economic, job, insurance status) or “facilitators” (e.g. social support from family and friends, religious beliefs), others were at time nebulous and contextual, changing with time and circumstances of the patient’s life. For example, being fearful of the complications of diabetes might encourage healthy attitudes and behaviors; or, on the other hand, it might impede coping skills and elicit denial.

Although in the present study several SDOH variables were clearly “barriers” and several

175 others were clearly “facilitators,” in general, such distinctions are best made based on contextual factors affecting any one individual’s ability to self-manage diabetes.

Second, physicians and patients manage diabetes in the context of myriad other maladies and difficulties, psychological, social, and economic as well as physical. They consider, treat, and manage the health of the “whole person.” Obviously, given that this study asked specifically about diabetes, that illness was the focus of both the visit and the interviews. However, it became apparent early on that diabetes was but one of several chronic, acute, and social health issues the patient confronts daily; and at times the presence of other often severe health problems further complicates the management of diabetes. Considerations of diabetes management, then, must necessarily be made in the context of broader health and wellness as well as social issues.

Third, several intrapersonal factors are implicated in overall health management.

These include early family history and background, beliefs, attitudes, knowledge, personality, psychological, economic, social, and religious factors. It should be stressed here, however, that although located within the individual, these factors are themselves products of interactions with the larger social system, from family (including family cultural background) to community to institutional to public policy issues: SDOH influence intrapersonal factors, with the exception of ascribed statuses (age, sex, gender, race, tradition). These intrapersonal variables are discussed in the appropriate sections below.

176 Fourth, most textual excerpts were coded in more than one category, often

several. Exchanges between the physicians and patients usually involved several

variables and qualifying remarks. The patients, rather than responding to the doctor’s

queries with discrete “answers,” most often discussed complex processes, thoughts, and

strategies. Consequently, there is overlap in the presentation of results below. Any one

“discussion segment” might be (and was) coded in several construct categories.

Fifth, extensive portions of this Results section include tables and figures illustrating factors, processes, and strategies involved in managing diabetes. It is the belief and hope of this writer that this visual representation captures the magnitude and breadth of the SDOH involved in health management more efficiently, effectively, and colorfully than would a straight-forward textually dense exposition.

Visual presentation of qualitative research results has recently received more attention, and CAQDAS has facilitated this process. Tables, maps, charts, figures, and word clouds have become more common in research result dissemination (Chandler,

Anstey, and Ross, 2015; Henderson & Segal, 2013; Verdinelli & Scagnoli, 2013). Complex

processes and dynamics are more efficiently relayed using visuals rather than dense

text; and, more importantly, visual representation emphasizes and honors the

participants’ own words rather than the interpretations of the analyst:

Qualitative researchers face distinct challenges in synthesizing and publishing their work. Unlike quantitative research, qualitative research often relies on dense transcribed text; these “mountains of words” do not lend themselves to the space limitations of academic journals … The use of quotations, presented as text, serve to exemplify the researchers’ interpretation of the data as findings. In today’s fast-paced world, presenting qualitative research succinctly and clearly is becoming more important and necessary than ever and requires new approaches and modalities beyond text (Chandler, Anstey, and Ross, 2015, p. 1).

177 Sixth, it must be re-emphasized that the sample of diabetes patients was drawn from the patient roster of an urban primary care clinic of a safety-net hospital system, one that (unlike other more typical healthcare systems) offers several resources to assist patients financially (sliding-scale fees, a Social Worker who facilitated applying for free medication, and an onsite financial counselor to help enroll patients in Medicaid or a rated program). Additionally, the Clinic was selected because of its exemplary record treating diabetes (access to and quality of care measures) relative to other clinics in the same healthcare system in 2009-2010.

For the most part, the sample patients were generally controlling their diabetes and following dietary, exercise, and medication regimens to that end. Moreover, the patients were also selected for participation in the study because they had made

“routine” appointments with their physician; i.e., they were seeing their physician on a regular basis. Certainly, given these parameters, one would expect that the study respondents would be more likely than patients in the general population to adhere to self-management standards and post better results. That being said, it renders their problems with self-management all the more noteworthy given the financial help they were receiving and their level of commitment to controlling their diabetes. The point is, even with resources at hand, the respondents nonetheless recounted ways managing their diabetes was difficult.

Seventh, as noted, verbatim comments are used extensively to report results of the study. This report format not only remains true to the initial intent of the analysis, but it also honors and respects the respondents by using their own words to describe

178 their personal experiences. Additionally, using verbatim comments rather than

extensive interpretive narration minimizes, to some extent, the role of this writer’s

theoretical lens: Although this research was undertaken using a Marxist theoretical

framework (as has been previously and extensively discussed), it is hoped that providing

extensive verbatim comments serves to validate the interpretations shared herein.

Extensive verbatims were used, too, because most of the data consisted of explanations

of complex processes people used to make sense of their lives (Corden and Sainsbury,

2006) and were, therefore, less amenable to presenting results in a more truncated fashion or using numbers to constitute results.

Finally, respondents were not always and necessarily asked specifically about barriers and facilitators. These distinctions emerged organically from the physician/patient discussions and from the patients’ depictions of their experiences managing diabetes made during the interview. Consequently, the textual presentation of results below (in contrast to extensive use of verbatim comments) is necessarily interpretive. This writer interpreted the respondents’ meanings and designated particular factors as being beneficial or detrimental to their ability to manage diabetes and their health in general. The reader may refer to the typewritten transcripts of the office visits and the interviews to validate these interpretations.

Social Determinants of Diabetes and General Health Management

Economic Factors as SDOH

A respondent’s economic position was the prevailing barrier affecting all facets of his/her ability to manage health, specifically diabetes. While one respondent noted

179 that she was not constrained with economic worries (e.g., she was retired and had a comfortable pension from a deceased husband), most repeatedly mentioned cost and expense factors as affecting their ability to seek healthcare in the first place, purchase medications, have access to nutritional food, and find safe and affordable places to exercise. Even with free or lost-cost medications and free or low-cost medical care services, many respondents still had difficulty paying medical expenses. As will be illustrated below, publicly financed healthcare assistance was not enough.

The following excerpts illustrate the several ways – often all-encompassing – that economic circumstances served as barriers in the self-management of diabetes and other health issues. Even with insurance, respondents had a difficult time paying the co- pays.

Low wage jobs, minimum or no income Oh, prior to that I worked at , and so all my care was there, but I had come off my job because of my issues and my mother’s health was sorely declining, and so I had to… I moved in with mom, had gave up my house. It was going downhill because I wasn’t able to work since February 25th of ’05, and so it was an overwhelming mess, so I ended up filing bankruptcy and moving in with my mom to help her, and my sister had just passed away.

I mean you know I don’t make that much money.

I didn’t make much, $9 an hour, three hours a day for three to four days a week.

Lack of health insurance Yeah, but like I said when I wasn’t going to the physician. I just wasn’t going. Other things were more important to me because of the fact that I didn’t have medical. So I just didn’t think about it. I knew I was sick, and I would just pray

180 that ‘Okay, I hope I could make another day without being so sick ‘til I just can’t get up out the bed.’ And that’s what I did. I wouldn’t worry about going until I was so sick I’d just have to call one of my daughters … to take me to Emergency.

Because with the new kit, I have everything I need, but the frustration and aggravation at trying to get more supplies without, you know without having insurance…

Lack of access (unaffordability) to healthcare I got to make another appointment to see her, because I had a financial hold because I didn’t have the $5 the other day. So once I pay the $5 I’m a make an appointment to come and see her in probably about three months.

Yeah. And see I can’t afford to go back to her. It’s $65. That’s too much. I can’t do it. The kids will chip in, but I’m not going to keep asking them to do that. That’s a little bit too much, and one of my daughters, she’s not working now. I don’t want to do that.

Food, diet Having more than what, two things on a plate is still kind of overwhelming to me, and to cook all that food and it doesn’t get eaten, and since I’m not working money is a very, very what, scarce commodity?

Okay, the most helpful thing is having the medication. The most difficult thing right now for me, since I’m not working but I’m receiving unemployment is the nutritional side of things, getting the food and stuff.

Because I know how to stretch food because I was taught that as a child. Even though we had an abundance, I was taught that you can take a little bit of money and go a long way …. I can live off of $20 a week.

And so although I would love to eat better, I would love… If money was no object, I would love to have a Nutritionist and someone to cook based on what the Nutritionist said for me. Therefore, I wouldn’t have to be overwhelmed with cooking all of it and not eating it, because I wouldn’t be the one putting it away or throwing it away or you know, and so yeah, that would be good.

Exercise The exercise I was doing three times a week, and I’m not exercising anymore because I can’t afford it so now I’m walking, and I don’t do that three times, but I remember what I used to do exercising, so I try to keep it up.

181 So I mean but it’s [exercise club] is just expensive, and when I turn 65 I want to get into the program they have for seniors, because I’ll be 65 in September, and I’m going to… I think they’ve got Silver Sneakers.

Medication … my only problem was getting the medication, because once I lost my job, I lost my insurance. My job moved out, , and now they’ve sold out to and the company no longer exists, so that was my main thing, but once I got the medicine I got better.

Well that’s the one that’s $28. The other one is more. It’s like $30-something. But you know what really got me? When I went to the Physician and when I went to the Pharmacist, I was paying $5. I had no idea that it had went up from $5 to $28. They didn’t tell me. Nobody told me, so I went there and he said “$28.” I said “I’ve been paying $5.” He said, “This is a very expensive pill.” I said “I don’t care how expensive it is, I was paying $5 for it yesterday, so today what was the difference?” and he didn’t say anything, because I was waiting for him to say something.

But you notice I have to pay 20% of this. I don’t have that kind of money. That’s why I don’t go to these places or do... You know I can’t afford it, 20%.

… Now I do have $2. I can buy the alcohol swipes … I need a prescription if I can get them for free …. yeah, I do have $2.

… she could have given it to me and I told her ‘Give it to me, because that’s why I’m here. I need the insulin and I don’t have insurance.’

Blood glucose monitoring Yes. I don’t do it [monitor blood sugar] very often at all, and when I was here last I think my car was still in the shop. I had been without it for probably like a month, and so the bill was over $600. My husband only works part-time and I’m not working now, so I didn’t have the money to go and get the blood sugar things, because you have to have insurance. You have to have insurance … and so I still haven’t gotten it [glucose monitoring machine] yet, but I just made my last payment to the to the mechanic, right, so that will free up money and I will be able to go get it.

Healthcare screenings Dr. M, she’s trying to get me to do a colonoscopy, but I don’t, but I do the stool cultures … once a year, you know, and so far they’ve been good, but I told her see I don’t have any healthcare yet. I’m trying to wait. I’m going to get some when they have open enrollment, because that is so expensive … my husband

182 passed in 2007 … so my income was cut in half … Dr. M said a colonoscopy could run up to a $1,000 or more …

That’s about the only thing is you know because you know it may, I try to tell her about everything that’s going on with me, but and I let her know if I’m not going to do a more expensive treatment not for a while anyway, but I don’t keep anything from her, but I just let her know I can’t do certain things at certain times.

Loss of job, unable to find employment What happened from there, it got to be a little expensive and my husband wasn’t working any longer and we had no healthcare benefits, and some friends recommended that I go there …

They [hospital] took care of me then, and between that time and now I’ve been looking for jobs and nobody’s hiring.

Surgery I had to come here to [city] for the surgery, because nobody in [city] would touch me because I didn’t have any medical insurance and plus I was unemployed.

Transportation I was just about all out of everything, all my medications, and they told me, you know I came here catching back up on everything and they saw how I was and they said, ‘Well you need this, that and that and that’ and I told them, ‘Well I have no way of getting around,’ I said ‘I’m unemployed. There’s no insurance or anything. For me to get just from my house to [clinic], I’d have to walk’ …

Oh I got to get this. My back, my legs like from here to he … they hurt so bad that when I cough, man, because I’ve been walking for the last six months … I just fixed the car two days ago … finally got the parts and money together.

… well I’m one of the few people in the world that don’t drive, so when I get dropped off I do as much as I can, so I won’t be running … I have one Deacon at church, he said, ‘You know you be down here for every function. You be everywhere … I guess it makes a difference when you have nice people don’t mind taking time with you and stuff, so I mean I can call almost anybody and get where I need to go.

My car is broke down and it’s been that way for what, about three weeks now, and life is difficult when you have you know appointments and follow-ups and things of that sort.

183 Nutritionist I didn’t before I had insurance, and the main reason I didn’t go back to that nutritionist, because why should I have to be trying to give her my little, during that time it was $30 co-pay and now it’s $15 … I mean you know I don’t make that much money. I said I’m not gon’ do that.

Dental services …. [dental] was extremely expensive. So I haven’t been back. I’ll choose another service. I won’t go through [clinic].

Seeing the doctor regularly Well I see him like maybe twice a year, because I can’t afford it because I have to pay that 20% and you’re only getting x amount of dollars Social Security, and then I’ve got to work to pick up a few extra dollars to pay bills. The 20% is not there.

Extended illustration of economic barriers

It is appropriate to end this section with an extended excerpt from one interview

in which the respondent discussed her precarious financial situation and how that

affected not only her ability to pay the bills, but also her emotional well-being. This

exchange was in answer to the interviewer’s question: What things in life in general do

you think make it more difficult for you to handle diabetes and all these health issues?

Her distress with trying “to make ends meet” while attending to her health needs was

palpable. Although discussed later, it is noteworthy, too, that this participant encountered myriad financial difficulties despite her receiving some public funding benefits.

Cost, oh god. You know you make… See I lost a lot of my Social Security because I quit my job and took care of my mother for 12 years. Well okay, had I known, I would have got at least $3,000 a month. I get 500 and something dollars a month. How the hell you gon’ live off of that? I’ve got to work ‘til I die. That’s what worries me, I can’t stop working … I own my own home. It’s been paid for over ten years. I travel. I go places. I do things, but the cost of everything out here is just… And even though I work anywhere from 20 to 31 hours a week, it’s still not enough, and then Social Security wants ‘But you can’t make but so much

184 money.’ What the hell am I supposed to do, starve for you?’ And then you’ve got, true enough you can get Homestead this and Home… It’s not enough to… Isn’t that hell? You’ve been working all your life. I put so much into my jobs and here it is, I’m almost 67 and I still got to go to work, and it still isn’t that plain enough. Now if anything runs my blood pressure up, that’s it. And then the funny part about it, you call them and you say ‘Well Medicare, you’re taking $90- something a month out of 500-something dollars. What the hell you expect for me to live on? Isn’t there a program to help me pay for this 90-something dollars a month?’ … Okay? Then okay now I’ve got to pay for AARP for Part D. Part D, that’s $35. Okay, they do pay half of that $35 a month. Okay, now the cost of everything is so doggone high I need another subsidy. I’m like what the hell? I call. I check. ‘Oh that’s $120 more.’ I say ‘Can you imagine $99 plus $120, plus $35 and half of 35 y’all do pay. So now that’s what, almost $20. Have you seen how much my Social Security check is while y’all taking all this stuff out of it?’ Plus, I have car insurance. I have house insurance … Okay, and do you know the crap is so high and goddamn, I walk around in the dark all the time. Why is my light bill so high? … I pray every day and I know the good Lord gon’ take care of me and I don’t worry about nothing.

Public Policy-Related Issues as SDOH

Public Policy-Related Facilitators

Most of the respondents reported using some form of publicly-funded financial

assistance, primarily the clinic’s sliding fee mechanism, Medicaid, Social Security, and/or

Medicare. One reported that her husband had VA benefits; another, that she was

applying for Social Security disability; and a third noted that he was urged to apply for

Workman’s Compensation but that he “wanted to work” but couldn’t “find a job.” One

woman noted that when she turned 65 she was enrolling in Medicare. Two respondents

noted that they had used the Family and Medical Leave Act (FMLA) to care for

themselves and family members (“… and well I got FMLA now, but it seems like every

year something goes on with my sinus”; “… Yeah, so I had just come back from Family

Leave for myself and my mother …”).

185 Clinic factors facilitating the patients’ ability to gain access to healthcare included

Social Workers, an Ombudsman, Financial Counselors, and a Medicaid spend-down unit located on the main campus. One respondent spoke of using a Family Resource Center located at the main campus of the healthcare system for assistance in obtaining financial aid. The respondents’ comments about this assistance were peppered throughout the visits and interviews and suggest that were it not for financial aid, many, if not most, of the individuals in the sample would have little, if any, access to quality healthcare. Many respondents mentioned having received assistance from the Clinic’s

Social Worker who helped them obtain free medications (albeit having to wade through much paperwork) and reconcile coordination of several financial aid packages (e.g., how does Medicaid Spend Down work with the Clinic’s sliding-fee scale?). The collaboration of the Social Worker and the physician was a pivotal factor in the patients’ ability to afford medications and control their diabetes. The Clinic also provides a Medicaid

“spend down unit” on campus that one individual, in particular, discussed at extensive length and in less than glowing terms. However, other respondents made it clear that the financial aid provided by the Clinic was important to them and that they appreciated receiving it.

Sliding-fee scale Yeah. Well some things, yeah, because right now, although we’re rated, I mean it’s a good thing. I’m glad I’m rated, because I don’t have to pay full prices because I probably would never go to the physician. Before they started this, before I found out about this being rated thing, I wasn’t going to the physician because I couldn’t afford… I didn’t have no medical. You know I didn’t have anything.

Always since I’ve been here. That’s what made me come here, because when I was living in , one of my neighbors, she’s the one who told me about

186 the first Physician that left and I can’t think of her name, and saying how good she was now, and she said ‘Just go on up there. You know they’ll rate you and whatever’ because I stay sick a lot, you know, and because I wouldn’t go to the physician because I was like ‘Oh well,’ I was going to have a bill, and I already got physician bills (you know what I’m saying) that I need to pay. But I need to pay. That messes up my credit, you know, so I said to myself, ‘Well I’m thinking about making a bill, but it can be a bigger bill if I pass away.’ You know what I’m saying.

Social Worker/free medication And then a friend of mine, she told me about rating and everything over here at [Clinic], which I did not even know about, and that’s when I came and got rated and that’s when I started this course with Dr. M, and that’s when she helped me get my medicine through those pharmacy programs that they have working with [Social Worker] … [Social Worker] is a beautiful person.

Physician: Got you. Okay. And then [Social Worker] was going to work with you to try to get you free medicine by the mail. Is that correct? Patient: Yes. Physician: Good. Okay, because I’m pretty sure we filled out those forms, so hopefully within a few weeks you’ll be getting your medicine free.

Financial Counselor And if you see the visit, when you visit how me and Dr. B is, it’s like that all the time, and it’s just a loving clinic and they care … from the Nutritionist, because I see the Nutritionist, from S the Financial Counselor, all of them they just, it’s like they care, you know, so that’s all right.

Ombudsman I ended up having to go, like I said, to the Ombudsman’s Office, and I started talking to her in the early fall. She left. Last time I talked to her was right before the holiday, Christmas of like ’08. She left. So when I called to follow up after the New Year like she told me to, some man answered and told me, ‘Well she’s no longer here.’ I said, ‘What?’

Medicaid Spend Down Interviewer: So did you get that worked out here with the Social Worker then? Did you end up talking with the Social Worker here? Participant: Oh not about the spenddown, except for just sharing with her how bad it went. So that was the beginning of April that the spenddown would happen, April 1 or March 1. April 1. Interviewer: So did she help you then? Participant: Oh she didn’t need to help me. The spenddown people are at the main campus. They’re a Medicaid Spenddown Group over at the main campus.

187 Medicare/Social Security I have Medicare. I have AARP Part D, and I’m trying to get Medicaid to pick up what Part A and B don’t pay, pick up my 20%. That’s what I’m trying to do.

Hospital Family Resource Center … The only time I talk about the totality of what’s going on with me is when I come to the doctor; or I was working with somebody at the Resource Center over at the main campus, when I have to tell my story, like when I was looking for subsidized housing, and so I’m crying out to them, because back then my mother’s house was in foreclosure, and so all that was new and oh my god, I was so overwhelmed … Oh, the only time that I talk about everything is like here or if I have to explain the reason why I need assistance or can’t do something, you know, you know talking about people, ‘You don’t work? Why don’t you work?’ ‘Well…’ and then it’s like, oh … [they don’t understand] …

Public Policy-Related Barriers

One of the key findings of this analysis is that while most of the respondents received some form of public funding for health care, it is not enough to cover their medical and living expenses. Time and again patients referred to their having Medicare,

Social Security, Medicaid or the sliding-fee scale benefit; but that despite that assistance, they still struggled to pay their medical bills. Even with some form of insurance, respondents were unable to afford co-pays. The comments below illustrate the extent to which financial assistance helps …. but. I have purposely included perhaps many more direct quotes than are needed to accomplish this purpose; but the disparity between “what is offered” and “what is needed” is severe enough to warrant highlighting this phenomenon.

Sliding-fee scale helps, but … Participant: … and we’re on this rate thing, but you still need the money to pay, and I’m low income and I just … I need work bad, but I just can’t afford it …

Yeah. Well some things, yeah, because right now, although we’re rated, I mean it’s a good thing. I’m glad I’m rated, because I don’t have to pay full prices because I probably would never go to the Physician. Before they started this,

188 before I found out about this being rated thing, I wasn’t going to the Physician because I couldn’t afford… I didn’t have no medical. You know I didn’t have anything.

I mean it’s good because you know I’m rated, so I didn’t have to pay normally what a person would have to pay to go to the Dentist, but it was hard for me to come up with what I needed to get in, so you know it took me a minute.

Medicare/Social Security helps, but … Well I see him like maybe twice a year, because I can’t afford it because I have to pay that 20% and you’re only getting x amount of dollars Social Security, and then I’ve got to work to pick up a few extra dollars to pay bills. The 20% is not there.

Participant: So and my husband passed in 2007 … So my income was cut in half, so I had to think of that … she [doctor] said a colonoscopy could run up to a $1,000 or more, you know. Interviewer: Now would [Clinic] pay part of it? Participant: Um hmm, and Medicare too, but I’ll still have a sizeable amount because when I did the stress test and all of that, they left me owing almost $700, and I can’t really afford it. My son helped me pay it, though, and I appreciate that. He helped me out … the out-of-pocket can be pretty expensive.

Participant: They set you up on a program. I was on a program where I was just paying $5 for my medication, but when I started getting Social Security things changed. Interviewer: Oh really? Participant: Um hmm. More money. What I was paying $5 for is $28.81 now for one 30-day supply.

Well I see him like maybe twice a year, because I can’t afford it because I have to pay that 20% and you’re only getting x amount of dollars Social Security, and then I’ve got to work to pick up a few extra dollars to pay bills. The 20% is not there.

… but the cost of everything out here is just… And even though I work anywhere from 20 to 31 hours a week, it’s still not enough, and then Social Security wants ‘But you can’t make but so much money.’ What the hell am I supposed to do, starve for you?’

I say ‘Can you imagine $99 plus $120, plus $35 and half of 35 y’all do pay. So now that’s what, almost $20. Have you seen how much my Social Security check is while y’all taking all this stuff out of it?’ Plus, I have car insurance. I have house insurance.

189 Federally Qualified Health Center (FQHC) One respondent spoke of her experiences with a Federally Funded Qualified

Health Center. She posed a rhetorical question during the interview that explicitly and

vividly captures how this health initiative falls far short of addressing the public’s needs:

… Now when I was going to [FQHC] Clinic, I did not like it … you know like they’ve got that neighborhood clinic. I was going there, and a lot of times you could pay, I think you pay $10 and you see the doctor, but believe me, I have gone in there at 8 in the morning, did not see a doctor ‘til maybe about 1 … I went there because I didn’t have insurance … you know they would take anyone, you know. That’s the worst… I mean they do what they can. They have some good doctors there, but they’re just overcrowded, because one doctor had 70 people to see in one day. What is that? How could he give good, anything good, 70 people?

Extended example of public policy barriers

Another respondent discussed at great length, during both the office visit and

the interview, the difficulties she had attempting to receive and coordinate public

healthcare assistance. Table 10 below presents an extended conversation between her, the physician, and a social worker in which the three grappled with the difficulties the patient was facing in navigating the bureaucratic maze of receiving financial assistance.

As can be seen, even the physician, who had been with the Clinic for 20 years, did not know the degree to which the various programs’ requirements conflicted with each

other; and the social worker was not clear on how the Medicaid Spend Down program

worked in conjunction with the Clinic’s aid programs. This exchange is presented in its

entirety because it powerfully illustrates the extent to which the respondent found it difficult to navigate complex, often conflicting bureaucratic structures in attempting to obtain healthcare funding. The respondent also discussed her bureaucratic difficulties at great length and in great detail during the interview. These conversations also vividly

190 portray the extent to which the patient’s difficulties “with the system” caused her stress, devoured personal time, and negatively affected her health. For this respondent, this subject dominated both the office visit and the follow-up personal interview. As is shown, she encountered myriad barriers along the way, from incompetent and rude personnel to bureaucratic mix-ups, mistakes, and miscommunication and publicly funded initiatives that conflicted with each other. Her last comment in regard to all her difficulties was a most telling, succinct summary of her experiences seeking healthcare financial assistance: “I’m telling you, it’s been a full-time job to make sure that I get and keep the assistance that I have.”

Table 10. Excerpt - public policy, health funding assistance barriers – office visit

Physician She’s got spenddown and she’s got the Community Discount Program. How does that work together? Social Oh, that I could not even tell you. She has to talk to the Spenddown Worker Department at [main campus]. But did you meet your spenddown? Physician Well she hasn’t because… Social Okay, yes, because what’s going to happen is if she does not meet it, it’s not Worker going to pop up. Patient Yes. They sent me a letter saying ‘You have no coverage.’ Social Right, and that’s why we were doing the Medication Assistance forms for you. Worker Physician So can we do Community Discount? Social Yes. Worker Physician How does that work? Social Well N is probably the better person to tell you, but it’s my understanding, if Worker they qualify for a Plan 100, they can get the discount program, and she’s a 100, right? Patient The rating? Physician Right. Social Yes, so it’s a certain income level that they can have the spenddown in there Worker as well as the discount program, and that’s for the 100s. Physician But then she’ll never accrue enough of a bill to qualify for her spenddown because we’re not charging her anything. Patient Right.

191 Social Yes. I know, I know. Worker Social So that means that we’re not getting anything from Medicaid for… That’s very Worker interesting Social Right, and that’s something, I don’t know why they even put that in there, Worker because everybody else they don’t do it, the discount program. They have to meet the spenddown. Physician Meet their spenddown. Social But for the discount, 100s, that’s my understanding, that they could still get it Worker because of the income level and… How much is your spenddown? Patient 254 Social Oh, wow. Worker Patient Yes Physician Is that high? Social Okay, but the thing about it, what I’m saying is, she’s so low … to be quite Worker honest… that her visits would probably help her to meet that. Physician But not if she’s on the Community Discount. Social But I should hope that the Medicaid Spenddown Department, they have a Worker system in place where they’re sending it off to help her meet that, but I’m not sure, and like I said… Physician So is there a number? Social Yeah, there’s a number for the Spenddown Department at Metro. Worker

Other public policy health initiatives – local/community.

Several respondents spoke, most often in passing, about various community

services and resources they had used to help them manage their health and their everyday lives: The Free Clinic, Planned Parenthood, local farmers’ markets, local supermarkets offering discounted medications, and their use of public lands/green spaces for exercise and enjoyment (hiking, biking). One noted that she was planning to enroll in a free exercise program, Silver Sneakers, when she was eligible for Medicare.

Another spoke with the physician at length during her visit about the various leisure activities and volunteer opportunities available in her local community – senior centers, recreational facilities, libraries, etc. Importantly, physicians and nurses were

192 instrumental in directing the patients to local grocery stores that offered discounted medications and distributed printouts to them with details.

Like if I have it, I go to the Free Clinic, but it’s hard to get in there, so you know I have to go. I have to do what I have to do. I’ll put it that way.

Yeah, that you need to be eating, and [Clinic] gives you a voucher, too, over there, but I never, I didn’t get it … at the [Clinic]. Yea. They call it Open Harvest, and you’re able to get vegetables and stuff from there. Like you know you might get $15 worth of vegetables and only pay like $5 for it or something, so everything helps.

Right, right, right, to go get the foods and do the things that I need to do, because you’ve got all types of food banks all over town and stuff too and they give out fresh vegetables and all that kind of stuff that you need.

I went to Planned Parenthood and they were saying you know because I’m overweight, being obese and having all my other conditions and … they were shying away from giving me birth control pills …

… syringes, I found them cheap at Walmart. You can get 100 of them for $12, if they haven’t gone up, because I’ve been on the Flex Pen, but I’m out and I don’t know why.

Nurse: I’ll tell you what I would do. I would try [grocery], if there’s a [grocery] or somebody with the $4 prescription plan … because if there’s a generic for those, if she didn’t give you the prescription for generic, all of them will only be $4 … versus if you went to [drug store] or [drug store], I don’t think… Patient: Well what about does [grocery]? Nurse: I don’t know if [grocery] has the $4 plan. You could go down there and check and they’ll be able to look at it.

Physician: So how long, how many, how far do you walk, I mean or how many minutes do you walk a day? Patient: It’s an hour, sometimes over. Really I walk around [name] Park twice. Physician: Okay. I’m going to have to check that out, because I’ve had a couple other patients tell me they exercise and they go down that trail there. Patient: Yeah, and it’s really nice … I think it’s like two miles maybe … It’s really nice though. So I walk there. Sometimes I go up to [park]. My daughter lives over there and we walk there.

193 Work/Occupation/Career/School as SDOH

As would be expected the patients’ past and/or present work/job/school

experiences greatly affected their beliefs, attitudes, and behaviors with regard to health

and diabetes self-management as well as other general life issues. Several respondents had worked – and some continued to work - in the healthcare field as home health aides, nurses, medical assistant, caregiver in a group/supportive living home, etc.

Several mentioned that a family member had or was presently working in the health

field. In part as a result of their past work and their connections with family members

and friends working in the healthcare industry, many respondents were generally

knowledgeable about health issues and the behaviors required to control diabetes. A

discussion of that social support is included in the Family section below. As was true for

their economic status in general, all aspects of work, career, school, etc., affected the

patients’ health and their ability to manage it.

The respondents vividly and colorfully recounted the various ways the world of

work either facilitated or impinged upon their ability to be and stay healthy. Job factors

that facilitated healthy living included gaining knowledge about healthcare, having the

support of work colleagues, and, in a few cases, having some form of health insurance.

Barriers, on the other hand, were legion, the most prominent of which was job stress

engendered by demanding and at times unethical bosses, uncaring and unprofessional

bosses, not being paid, unprofessional co-workers, onerous and unfair job

requirements, et al. This finding is particularly relevant in view of recent research (a

194 systematic review of the literature) that confirms powerful linkages between diabetes specifically and work stress levels:

Two additional work-related barriers had a significant impact on both mental and physical health: Injuries on the job and being denied employment because of a diabetes diagnosis. The two respondents injured on the job not only suffered physical consequences but also were burdened with navigating the processes involved in obtaining assistance. At the time of the field work for this study, neither had received the benefits for which they had applied: Workman’s Compensation and Social Security disability.

Um hmm, I was borderline and never crossed over or never was checked, urine or blood testing, and one day I went for a job and during their physical process I came up like 400 and they wouldn’t hire me until I saw a doctor and got medication …

… we had to go over to the main campus to sign some release forms to get the medical records because I’m trying to get Social Security Disability. I’ve been trying to get it since ’06, and am caught in this appeal spiral …

Well I’ve had a back problem since ’83. I was injured on the job, and after that they said I had like a herniated disc over the years and because I was out of work for a couple of months … I had maybe about three back injuries, I mean because Rehab Nursing is pushing, pulling, yeah.

… Then after I had got hurt with my back, then that was it with the job.

One respondent had worked in a hospital system helping people obtain financial aid but noted that in trying to do so for herself, she was having a difficult time. The

195 knowledge of “the system” she gained through her experiences on the job made her aid-seeking problems all the more “annoying.”

Participant: Well I’m getting ready to send my papers in and I know I’m gon’ have to have a meeting. You see the thing about it is, I have helped people all my life, did all this stuff, and it’s harder for me. Interviewer: Why is that, do you think? Participant: I don’t know. Interviewer: And you knew how to do it, didn’t you? Participant: Yeah, and I know how to do it, but it seems like it’s so difficult. It is so annoying, because it’s me maybe. I’m helping all these other people, seniors that didn’t even know that they could get a pension check. They was just getting a little Social Security check and different things, and I’m helping them get Medicare and Medicaid and VA and ‘Your husband died? Oh let’s see. Was he a veteran?’ You know I’m just all in their business. I got the resources.

The verbatim comments below illustrate the various additional ways work, as a social determinant of health, affected the health and health behaviors and beliefs of the study participants, for both good and/or ill.

Applying what they learned on the job to their own health You know I take care of people and you know I pick up on things that the doctor says to them and all of that, so I just keep my feet clean and I keep them dry. That’s all you can do.

… and see I’ve been in the medical field all my life and I know all these different ups and downs and ins and outs, and I used to sneak in surgery and watch them, go down to the morgue and watch them cut people open and all that stuff.

Healthcare job experience Interviewer: What is motivating you to eat better? Patient: The high blood pressure and the diabetes. Interviewer: Ah, that gets you to move, huh? Patient: Yes. Yes, you know because being in Rehab Nursing and the fact that most of our patients were stroke patients … I saw firsthand … Okay, and I don’t want to have a stroke.

… Well I went to [school] and one time was going to be a Dietician.

… I spent almost 14 years in nursing.

… Well I’ve been at [hospital], in and out, for years. I had my training at [hospital] in 1960 something … I was studying to be a Registered Nurse, but I decided to be a Medical Secretary … then Home Health Care … and then I went

196 into Business Management. I’ve always been a Supervisor ever since my first little job. I’m almost 67 now. Always been a Supervisor or a Manager, yeah.

Health insurance with job Interviewer: … you didn’t take meds for a long time? Participant: Right, but I’m not taking no chance. I got a little insurance on my job, so I do get the eye drops. Interviewer: So you do have some insurance now? Participant: Yeah. Interviewer: And so now you are taking eye drops. Participant: Um hmm.

Work-related stress But I really, I don’t have the stress that I had on the job. That’s why I retired. I retired. I just made up my mind to retire because of the stresses on the job, and so you know I don’t have that stress anymore …

You can’t do it all in one day. You just can’t, and I was trying, and so now I’m doing a little bit better … It’s bad when you hate to go to a place, when you get up and as soon as you wake up you be like ‘Ugh, oh my god.’ Start getting headaches. I said that’s bad. That’s not healthy.

… because I find there it used to be really stressful unnecessarily, but I started taking care of my business. I do what I’m supposed to do, and I’m going to take care of me. And like I said to her, ‘Slavery has been abolished many, many years ago, and I need something too. I need to take a break, because you know like I don’t per se get a break where I can go off to myself, you know. So I let her know that that’s important to anybody, but you can’t, because like I’ve got four guys there in that house …. (caring for patients in a group home).

Not having a job … and the biggest I ever got was like 185 pounds and that was because I got laid off from my job at a tool and die company and I was just sitting back waiting on the unemployment checks and drinking beer and drawing, wasn’t doing no exercise or nothing. I got up to 185 pounds.

Not being paid for work performed The excerpt below is particularly noteworthy not only because it showcases the degree to which job difficulties impinged upon the well-being of the respondents, but also because it occurred during the office visit and was prompted by the physician’s greeting upon coming into the exam room: “I hear you got a job.” Talk of job and job worries and problems constituted much of the early discussion, and it was several

197 minutes before the conversation turned specifically to health issues. This exchange

demonstrates key dynamics of the doctor/patient relationship. First, the physician

knows the patient, her background, and her economic difficulties. As will be shown

later, this particular “bedside manner” trait – “my doctor knows me” - was among the most-treasured by the respondents. Second, the physician, believing the patient’s having a job was good news, had been prepared to offer her congratulations, but said in support, “oh, that is so horrible.” This particular dynamic was played out again and again in all the office encounters. The physicians know their patients, and at all turns offered them emotional support as well as health care services.

[My job] is about to end because he [boss/owner] hasn’t paid us. I’ve been working two months and he hasn’t paid us. He said he don’t have no money. It’s a cleaning company these guys own. So we all sat and talked yesterday, the three of us that’s still there, because two people already quit, but I’m just there by faith hoping that he can just give us the money … I called the company; they said that we don’t work for them, we work for him. He’s franchised with them, and they give a check at the end of the month. We only get paid once a month, the end of the month, less than minimum wages, okay, but I was just so happy because you know I’ve been looking for a job. You know I want to work, you know, and so I just figured some money is better than none and he ain’t paid us. He said he don’t have the money. Every time he comes up with something different. Then he just makes us think that we gon’ get paid, so we’ve been holding on. Two people already quit. The one lady, she walked off yesterday, and one man, he did it last week, so it’s just three of us left and the three of us talked yesterday. We said we gon’ try to finish the end of this month out and hopefully he’ll pay us. But then my sister, what she said makes a lot of sense. She said ‘You keep putting yourself deeper and deeper because you keep working and he gon’ be deeper and deeper in the hole owing you,’ owing me, but I just try to have faith, you know.

Lost job because of my and my mother’s health issues (because of caregiving responsibilities) Oh, prior to that I worked at [hospital] and so all my care was there, but I had come off my job because of my issues and my mother’s health was sorely declining … So you know I went back in August, but I had to be, I had to call in a lot because of my mother, because of myself, and it was very hard and so finally

198 in January, January 6th or 9th of ’06, January 9th of ’06 I had gotten down to my last written warning and they were going to dismiss me, so… I loved my job. I loved the people …

Boss continually wrote bad payroll checks My boss was a pleasant man, but he wrote bad checks routinely … and so I finally, it was like when I got married, after that point it was like ‘Why do you keep doing this?’ So he writes the bad check. I’ve never experienced bad checks, so of course I did what… You take the check to the bank, they give you money … so finally the next time he did that, I was the front desk person. I started deducting the penalty for the bounced checks and the $8 that I had to go to his bank to cash my checks … and so that became overwhelming to me stress wise and anxiety. Pay day became, ‘Oh god…’

Injuries on the job Well I’ve had a back problem since ’83. I was injured on the job, and after that they said I had like a herniated disc over the years and because I was out for a couple of months, go back to work. I had maybe about three back injuries, I mean because Rehab Nursing is pushing, pulling, yeah.

Demands of college life Yeah, because the thing was being that I was studying for all those finals and stuff and really not taking time to really eat right, eating candy bars and drinking coffee … You know what college students do, and it wasn’t good for me.

Diet temptations … Because I know whenever I’m at the nursing home working, like I worked at a nursing home, and there’s always something sitting there, sweets, chocolates…

You know I did all of these things that I was told to do and it (cholesterol) became better, but then like you know circumstances and the way you work and all that kind of stuff and you fall to the wayside, and because I was taking care of the little lady. She was 90-something years old and didn’t give a hoot about what she ate, and I had to eat with her, and I sat there and let that little lady encourage me, ‘Oh it ain’t gon’ bother you.’

Work hours interfere with exercise preferences Physician: And you know what? This woman in the next room told me she does that and she said it’s really fun. She goes… You know a lot of the area recreation centers have water aerobics classes… Patient: Hmm. Physician: …and actually it’s kind of fun. Patient: But when will I have time to do that? And I know I’m not going at night. Physician: You don’t want to go at night? because probably after work you’d have to go, right? Patient: Yeah. Physician: Or on the weekend maybe, or do you work seven days or just five? Patient: I work five, but I work

199 every other weekend. I have every Monday off. Physician: Yeah, so maybe every Monday you could go do it, because it’d make you feel better. You’d feel a lot better if you get some exercise.

Being denied job because of health. So that’s when they said my blood pressure was off the chart. And then I went for a long time after that, and when I first came to [hospital] in ’81, they told me if I couldn’t get my blood pressure under control that I couldn’t work, so that was the real first time that I got on medication.

Family as SDOH

Family played a pivotal role in the respondents’ lives and in the management of their health. During both the office visits and the interviews the respondents made repeated references to various family members who were instrumental in some way

(most often many ways) in affecting their health status and behaviors, from transporting them to doctors’ appointments and emergency rooms to accompanying them on walks in the park for exercise. During both office visits and the interviews, the respondents constantly referred to family members in one context or another. They most-often

mentioned their mothers (n = 101), daughters (n = 64), sisters (n = 59), and

grandchildren (n = 43). Although this was a qualitative study of small sample size and

there was no intent to provide metrics, it is noteworthy that family came up as a subject as often as it did. One gentleman’s wife accompanied him to his office visit so that she would better understand his health and medication issues. In another case, both the patient and her husband had diabetes; and the patient related how this influenced their diet and exercise patterns. They supported each other, reminded each other, and worked together to maintain a healthy lifestyle. As the comments below illustrate,

200 family members provided social support to the respondents at all levels: emotional, instrumental, informational, and appraisal.

Emotional support So it [written print out of test results] lets you know where you’re at too, not just the doctor telling you, because sometimes like I’ll come from the clinic or something and my kids will say, ‘Well Mom, what did they say?’ and I’m like, ‘Oh well you know I can’t pronounce all those big words and all that stuff, some of that medical stuff.’ So right there it’s there, I say, because you know both my daughters done went into doing medical stuff too, you know, so they said, ‘Okay.’

Physician: And how much [of your depression] is missing your grandson? Patient: Oh probably 90%, but I talk to him every day, and he’s moved from [city] too, and he’s in [city] and he’s working. Hopefully this will work out. He’s working right now and training on this job. But yeah, that had a lot to do with it when he moved, but I talk to him every day. Physician: Which helps, but it’s not the same. Patient: No, it’s not the same, but I was very distraught when he moved. I mean he’s a man and so but my youngest son visits and I have two grandchildren here, you know that they visit.

Interviewer: Do they [children] watch over you? Participant: Oh yeah, including the grandkids and the great grandkids. Um umm. They worry to death. No. And the funny part about it, I started dating. Why Lord did they come? ‘What’s your name, and what you plan on doing with my mother and what you got, and how you gon’ take care of my mother?’ … so it’s a good thing, you know.

All I remember was, I remember picking up toys, the central light going out and I was out and the next thing I know, when I opened up my eyes I was laying on my back and my whole family was standing there: my son, his wife, his mother, his brother, the paramedics, all these faces circling me …

Instrumental support Interviewer: Now would [Clinic] pay part of it? Participant: Um hmm, and Medicare too, but I’ll still have a sizeable amount because when I did the stress test and all of that, they left me owing almost $700, and I can’t really afford it. My son helped me pay it, though, and I appreciate that. He helped.

Interviewer: So are you going to get a different monitor at home? Participant: Yeah. My daughter, she’s going to try to get me one. She works for, oh I can never… I think it’s .

201 Interviewer: Do you test your sugar? Participant: Yes. My daughter uses a… She works in a lab and so she checks it for me … maybe once a week. She has the machine.

One time I ran out of syringes and my uncle brought me… I was talking to my grandma and I was telling her that I needed to get to the store to get me some syringes, you know, and so then like a couple hours later my doorbell was ringing and it was him, because my grandmother just lives right on , and he handed me a whole thing of the syringes and stuff. I’m like, ‘Oh, okay.’ Because he’s a diabetic, too, so he’s like, ‘Well, here …. I can share these with you

… I thought it was from just eating and I was just gaining weight and my stomach had gotten real big, and then my mother was staying with me. She told me to call my son. He came from [city] here to take me to … I thought it was from just eating and I was just gaining weight and my stomach had gotten real big, and then my mother was staying with me. She told me to call my son. He came from [city] here to take me to the Emergency.

My daughter made the doctor’s appointment for me.

Informational support The girl, my daughter got it [daily menu planner] from some woman that was a diabetic, and she made herself up a list what she wanted to cook and stuff. So my daughter got it from her, and she had turkey, chicken, fish, the broiled foods. No beef.

Yeah. When you get the diagnosis you be frightened, and also they tell you about the diet, so you just cut out everything and just go strictly by that diet, and that’s what my sister was telling me. She was telling me, ‘You don’t have to be like… You can eat, but you just do it moderately,’ but I was so petrified ‘til I just ‘Strictly diet.’

Appraisal support … and then I’ll just prick your finger, you know.’ So then she pricked my finger and then she said, ‘Mom, your sugar’s high. It’s real, real high.’ Then I said, ‘Oh, okay.’ So then she said, ‘Are you taking your shot and stuff like that?’

… My daughters, they think that you’re, our age, they think ‘Well maybe you need to get a second opinion and maybe you need to go over here,’ and so I satisfied her and went to [hospital] and had my CT scan and all that … they talked me into going. So that’s where we’re making appointments to do the MRI.

202 Um hmm. It’s like I’m losing fluid or something, but my blood pressure was good. I don’t understand this. Sometimes I think I’m a hypochondriac. That’s what my family says.

Yeah, and I take them all together. Maybe I shouldn’t, but just take them all together, ten pills, and you know my children or grandchildren, they see me and they say ‘How can you swallow all of that stuff?’ but I’m used to it. I just take it all at once.

Yeah I still feel it and I don’t know why [allergy, sinus problems, breathing problems]. Maybe it’s in my house, and my son told me, he said ‘Mom, it could be in the house. You could be allergic to stuff inside the house.’

[Re job problems] … But then my sister, what she said makes a lot of sense. She said ‘You keep putting yourself deeper and deeper because you keep working and he gon’ be deeper and deeper in the hole owing you,’ owing me, but I just try to have faith, you know.

… my daughter. I’m trying to tell you, she talked me into going. So that’s what we’re making appointments to do the MRI.

… like my sister said, it’s [diabetes] manageable, because she has it. She seems to manage hers super good. She said if you do what you’re told to do you can manage it.

Influence of family on diet, cooking, exercise

Family members also played a significant role in decisions the respondents made about diet, cooking, and exercising options. Many noted that when they had family living in the home they tended to be less likely to monitor their diets, commenting that they were easily tempted to snack on sweets and other “junk food.” One respondent noted that since her husband also has diabetes, they both monitor their diets and support each other in “eating better than we did before.” Respondents spoke of walking for exercise with family members and friends and indicated that they are more likely to do so when they have “company.” One respondent noted that she found it more difficult maintaining a healthy diet and exercise routine because she lived alone.

203 Diet. …but I was fixing to say when I was taking care of my mom, you know I was cooking for more than just me, so it was easier to kind of eat more of you know a variety, because it was just more than me to eat it. My husband, he’s not big on leftovers and he has a funny palate, and oh…

Well this is what I do. I buy less food, and the less food I have in the house, the less I’ll have to go in and say ‘Oh, there’s some chips. I think I’ll have chips and a hot dog or something.’ I don’t do that anymore. I buy just enough, and of course I’m by myself now, but when my grandson was living with me, who I had raised since he was eight months old, I would eat because I would buy everything that he wanted, even up until he moved last year. I mean he was just a growing, just a big, a growing boy and I mean two gallons of milk a week and potato chips and cookies and I’d just be tempted. And so that was another distraction, because I had to buy food for him and then I would eat and he’d say ‘Oh Granny, I’ve got a taste for ribs,’ and I’d say ‘Well I don’t feel like cooking. Let’s to go the rib place,’ and things like that. But now he’s not with me and so I don’t buy a lot of food. I mean I can live off of $20 a week.

Right, you know, but it’s a different, it’s a different kind of lifestyle you know from what I’ve been used to. All that boiled food. Like I like greens still. I love cabbage still, but I don’t, the meat that I was putting into it, that’s what was bad … I don’t like salt pork no more because it’s so fatty, you know, so I’m working. I’m finding something. I’ll find something and I’m not going to use beef period. Changed my whole lifestyle, my husband’s too. We eat differently, and he likes it.

… See I’ve got Chefs in the family so that helps too.

… because I ate healthy and I made sure that she ate healthy. Then when she got married and it was just me, the first year I still cooked a lot and then finally I got used to cooking for one, and then after a while it was like ‘I don’t have to cook.’

See they don’t like to eat leftovers. Well my father doesn’t. My son can eat up everything and he’s so thin, but my father just had, his heart wasn’t beating right, so I was trying to cook healthier for him …

Sometimes I have to cook different for them [husband and son] … because they don’t want to eat healthy foods … Interviewer: What do they like to eat? Patient: They like pork chops and fried foods. Interviewer: Does that make it difficult for you? Patient: um umm.

204 … what I’m hoping to try to do is get myself, lose a couple of pounds by the time I go back and do some exercising, get the diet right, go back to eating like I normally do, which I haven’t been doing. I mean when you’re by yourself, sometimes it’s kind of hard.

Exercise. My girls had got me into the exercise thing, program, and I think that did it. I lost weight … and then they had bought me a treadmill. It was upstairs. Did I go up on it? No. But now I’ll go upstairs and get on it … they all chipped in, my son and my two daughters. They chipped in and they got it.

You know I really don’t have time now. I have a sister-in-law lives not very far from here. Whenever she’s available, you know we go for walks.

It’s really nice though. So I walk there. Sometimes I go up to [park]. My daughter lives over there and we walk around there, you know. But all three of us are working on it, so.

That’s my favorite, and whenever I’m over my sister’s or my niece’s house, they have the treadmills and the pull-ups and exercise machines. If they’re there, I’ll get on them, because they’re toys to me.

But I think if I had a little more motivation with the exercising. Now my son-in- law he does that. Oh he’s really in shape. He’s a, I don’t want to say a fanatic, but he looks good and he used to lift the weights, the muscles and stuff, and it’s just downsizing. I thought he was one of the kids. His back was turned. So when they come, but they live in [City], so when they come he be talking about ‘Come on, Ma, do this,’ and I’m looking at him like ‘Are you serious?’ So I started doing a little bit of… You know I do all the complaining, but when everybody turns their back, I try it.

My girls had got me into the exercise thing, program, and I think that did it. I lost weight. I went from 189… No I think I was 2-something here, 205 or somewhere. I’m 174 now.

Respondents as contributors of social support and caregivers

The social support given to the respondents by their family members was reciprocated: They talked of visiting with grandchildren and babysitting every day while the parents were at work; and one woman discussed at length her raising a grandson from infancy. During one interview a respondent spoke expansively about her

205 experiences caring for her mother and a sister as well as tending to her own ill health

problems. Her caregiving responsibilities – coupled with her own personal difficulties – caused her serious financial struggles and exacerbated already existing health issues.

Similarly, another respondent, beset with a host of health problems in part due to a traumatic, debilitating injury, spoke of being more concerned about a seriously ill sister than his own troubles. Respondents also were mindful of the lives and needs of their children. They did not want to be a burden to them, and they did not want to impose on them. They understood that their children had very busy lives and many responsibilities raising families and working.

Caregiving. I keep [my granddaughter] most times while her mom works. I send her to school and keep her until her mom gets home from work.

I raised 28 foster kids, ten of my friends’, three of my own, my grandkids, my great grandkids, and I had seniors in my home taking care of them …

Cost, oh god … See I lost a lot of my Social Security because I quit my job and took care of my mother for 12 years. Well okay, had I known, I would have got at least $3,000 a month. I get 500 and something dollars a month. How the hell you …

I really enjoy working in the yard, but I watch my great grandson. He lives with me. He’s 2½. He is a rambunctious … I don’t get to walk as much as I would like to during the day, you know like just a nice relaxing walk or brisk walk …

Not wanting to be burden. Hmm, god, I had to depend on my kids to do for me [when I was first diagnosed. Honey, no. I did not like that … I said ‘Oh my God.’ I said, ‘Lord, let me always be able to take care of myself. Keep me in my sound mind, because I don’t want to depend on these kids to take…’ You know what I’m saying? Oh Jesus, have mercy. I’d go crazy.

So my husband’s very healthy, so I don’t have to you know care for him in that area. So now I do have all the time in the world to concentrate on me … because I don’t want to be a burden to my husband …. not that my mother was a burden.

206

The kids will chip in, but I’m not going to keep asking them to do that. That’s a little bit too much, and one of my daughters, she’s not working now. I don’t want to do that.

One respondent related that although she was close to her children and grandchildren and enjoyed visits with and from them, she no longer had the “energy to keep up” with them.

I don’t have the patience anymore, and the daughters-in-law, you know, and they say ‘Like you don’t care anything about it.’ I said ‘I don’t want to be bothered, you know. I’ll let you know’ … I don’t have the patience, the energy. They like to, you know they like to go and I don’t have that energy. I said ‘If you want to come over here, you know it’s TV, and you know I’ll take you to the store to get ice cream or something like that,’ but I don’t have the energy. But I did go to Columbus last week because my 14-year-old grandson, he graduated to the 9th grade and then his sister had a ballet program, so I did drive down there for that. It was very nice and I stayed in a nice inn.

Although family was central in their lives and influenced their health lifestyles, most of the respondents generally believed that their first priority was and had to be their own health. Several, in essence, asked: If I’m not well, how can I care for and enjoy my family?

You want to be independent. Don’t want to have to have somebody take care of you… I mean that’s just, that’s normal. Your health should be your number one priority, okay. I mean my family, my friends, they’re all a priority, but my health is top priority above any and everything else, because if my health goes down, then who will you call?

You know what? I made a pact that I come first. You know I’ll do you, but I come first, and I’ll do you right. But I come first, because I have been told on my job… Well not just me. It has been said in meetings, ‘When you’re on this job, you don’t count,’ and me with my big mouth, I, ‘I’m first! I do count. If I don’t count, then I can’t do them.’

Interviewer: Does anything in your life take priority over your health? Participant: Can’t let that happen. I can’t let that happen.

207 On the other hand, some participants did qualify their commitment to themselves, and one flatly related that she felt forced to put her job above her health.

Another, that her health could not be a priority because she couldn’t “afford it.” A third

respondent, who himself had debilitating health problems attributable to both an

accident and several chronic illnesses, stated that he was most concerned with his sister

who lay in a comma, the result of an accident. A fourth respondent recounted at length

her experiences working with/caring for an MRDD client. While stressed by the

responsibilities, she was committed to his care.

… but see I have an MRDD person… I just got him … I’ve had him two weeks and it’s just, he’s 25, but he’s like a child … it has been a very stressful situation … because I go to work if I’m sick. If I don’t feel like it, you know if my body is aching with arthritis (I have arthritis, too), if my body is aching and everything and I don’t feel like moving, it gives me a reason, ‘Get up and go’ because you know you’ve got to go see about them … because if they call me to go take care of a patient, then I’m going to go take care of the patient.

Yeah. Yeah, but like I said when I wasn’t going to the doctor. I just wasn’t going. Other things were more important to me because of the fact that I didn’t have medical. So I just didn’t think about it.

The job, because it doesn’t matter what’s going on with you. I don’t care how many years you’ve given them or whatever, and it’s just a whole lot worse now.

Influence of family medical history

Most respondents recalled the influence of their parents and early home life on

their beliefs, attitudes, and behaviors, not only about life in general, but also about

diabetes specifically and how they managed it. The respondents described, often

extensively, the health history of the various members of their families. Several chronic

illnesses were mentioned, prominently diabetes as well as cancer, heart disease, high

blood pressure, epilepsy, and asthma. Having a family history of diabetes (as well as

208 other illnesses, particularly cancer) was a motivating factor in the respondents’ self-

management efforts; and it was also, at times, a source of fear. Knowledge of family

medical history increased the respondents’ consciousness about illness and prompted them to pay attention to their own lifestyles and behaviors. This was true for other health conditions as well, particularly cancer. One woman recounted how her mother, who had been the “first Black RN” in her hometown, cautioned her to examine her breasts yet ignored her own advice and passed away with breast cancer at an early age.

Similarly, another respondent spoke of her mother’s having died of a “massive heart attack at the age of 43.” She believed that if she took care of herself, her condition would be “controllable.” Having a family member with diabetes or having a family history of diabetes made the respondents more mindful of the disease, particularly the ramifications if not controlled.

I’ve got, one, two, three. I think I’ve got like four or five. I think I’m the sixth person in the family that’s been diagnosed with diabetes. Okay I was the first person in the family that was diagnosed with thyroid, Graves, and it’s four of them (a mother, a father and two daughters) all have it, and I was the first one. So it’s five of us who have it.

… because they always tested me because it runs in my family rampant. My sister, my middle sister was Type I Diabetic and my mother became Type II. I don’t know if she was Type II back then, or if it came on a little later … because we ate the same things, you know.

My sister had end-stage renal disease because of diabetes. Yeah, so knowing that that’s in my history, I’m very, very …. I eat pretty well …

And as I said before, I am more aware because of the health concerns that my mother was very adamant about, and so I’ve always been conscious of ‘Oh I’ve got a swelling there. What in the world is that?’

209 … heart attack, cancer, diabetes. it’s in my family. Those are the main things that run in the family. My father was 44 or 45, and my sister was 42. She was in her 40s, and I kind of skipped past that. That was a scary stage there.

My mom had asthma really, really bad. My brother died. He was an asthmatic so bad, bronchial problems so bad.

One respondent spoke at great length about her experiences with diabetes and the involvement of her family. Table 11 below presents her comments and illustrates several processes, health influences, and relationship dynamics at play surrounding family support: a daughter worked in the medical field and shared knowledge with her; a daughter encouraged her to lose weight; when she and a daughter grocery shopped together, they monitored each other to avoid (or minimize) the purchases of sweets and

unhealthy food; the family prepared healthy dinners during holiday seasons because

“my family knows I have diabetes”; she doesn’t totally deny herself, sometimes wanting

– and taking - “a piece of rib”; she eats in moderation, “I’m not going to eat and keep up

like before”; an older sister with diabetes is a vegetarian and the family is sure to have

“something for her to eat”; for the family as a whole eating healthy has become a

routine, an “automatic” way of life; and she and her family communicate often with

each other about diabetes, to the point that a brother teases her saying, “I liked you better when you were quiet.”

From her descriptions it appears that the family very much enjoys each other’s company, they laugh together, tease each other, use humor to communicate, and celebrate “Just Because I Love You” luncheons together. From this extended dialog it is clear that self-management of diabetes for this respondent is very much a family affair.

Finally, the respondent was proactive in her health care, calling the doctor and leaving a

210 message. In turn, the doctor was available for and responsive to the patient’s needs and urged her to “get to the emergency room as soon as possible.”

Table 11. Excerpt – family and diet

Interviewer Respondent

Like this daughter right here, this is my oldest daughter. Like she, what motivated her when she was living in , she was working in… because she’s a big girl, you know, and she was working in in the cosmetic… Well she was seeing breast reductions and tummy tucks and she was assisting you know giving the whatever she was doing in there. She said it just showed her that ‘I need to get this weight off me. You know people are coming in here and getting all of this,’ and she wanted to do it naturally because they, some people, they be… She said in Recovery she had to you know make sure they were all right in Recovery, and the one lady said she hurt so bad, it’s worse than having babies and she done died and came back, and you know she said different stuff like that made her… So my daughter, she’s lost a lot of weight, and then she’s a healthy cook anyway. I mean she cooks healthy anyway, but her thing is, when she gets upset or something’s not going the way she wants it to go in her life, she binges on sweets. Sweets. So when you go to the grocery store with her and she’s in one of those moods, you’ve got to say, ‘Okay, get out of this section,’ because her whole cart be sweets. I say ‘Where’s the meat at? Where the food at?’ Then she says, ‘I just got to get out of this mindset.’ And so that kind of helped me too. I say, ‘Well I can’t be like her.’ You know what I’m saying?

Right. Interesting. And like I went to the grocery store with her a couple of weeks ago, me shopping, and then she’s over there with these pastries, so I bought a big thing of pastries. And so when I got in line, I said ‘You know what? I can’t shop with you.’ She said, ‘Well Mama, you don’t have to get them,’ so I put them back. I told the lady, ‘I don’t want it,’ you know. So I handed her my card now you know so. That’s good. And then my baby girl (see this her right here, the one I’m talking about), yeah, so she’s coming, yeah. But she lost a lot on this picture. She’s really down from where she was at. Are there things that Oh yeah, because they, when I like go to Thanksgiving dinner, you found helpful, that Christmas or whatever, you know, or go to dinner somewhere. My the family has been family knows I’m a diabetic, and so they always have something. helpful in terms of managing your diabetes?

211 That’s good. Something there that I could feel comfortable eating too. You know what I’m saying? But every, like I say, every now and again, if I want a piece of rib, I’ll eat me a rib. I’m not going to eat and keep up like before. You know you could eat, eat, eat, eat, eat, but it’s just they always have something there. Like my oldest sister, she’s a diabetic. I mean she’s a vegetarian, so we know she’s a vegetarian, so when we have parties or dinners or something, or “Just Because I Love You” brunch or something because we do that, we make sure it’s something there for her, you know. You know so that’s what we do. So you don’t have to Um umm, because they already know. They already know, you necessarily… It’s not know, because I’m always talking about it. They told me, ‘If you say like they call you and one more thing about diabetes I’ll put you out.’ My say, ‘What can you brother said, ‘I liked it better when you were quiet about it.’ I said, eat?’ or something. ‘But you see what happened to me. I wasn’t taking it serious.’ He They automatically… said, ‘I liked you better.’ His wife said, ‘Leave her alone. Let her talk,’ so I just say, ‘You know, that’s not good,’ and my brother says, ‘You’re not gon’ come here and tell me what I’m going to eat.’ So sometimes I can get carried away with it, but it be all in fun. You know I have people laughing. It ain’t like they say, ‘Okay, we ain’t gon’ invite her over for dinner no more.’

Historical family cultural influences

In addition to family medical background, the respondents also described cultural influences of their parents and families involving dietary practices and preferences, health beliefs and practices handed down from parents, and the socioeconomic status of their household during their early years. In some cases, the respondents noted that they had to mindfully change their childhood dietary habits to a healthier regimen required in the management of diabetes. Respondents also recounted how health information and advice that their parents had passed on to them influenced their health beliefs and behaviors. A few individuals recalled medicinal “cures” from the past, such as their parents’ giving them castor oil for their ailments.

Diet, cooking Now I don’t just think that ‘Oh, I need potatoes and gravy and rice today,’ because that’s the diet, that’s all I knew all my life, because southern food is that

212 for breakfast, lunch and dinner, it’s like your breakfast is like dinner, your lunch is like dinner. All those meals were full-course meals …. your breakfast is like dinner; your lunch is like dinner. All those meals were full-course meals. You know rice, toast, rice and eggs and bacon is a stable food in the south, and biscuits, or toast.

My mother came from the south, so I used to cook rich. That’s probably why I’m diabetic. We use butter. We use sugar, and we did a lot of desserts and everything which you know and we ate it. You know but you don’t eat like that. You have to change your whole way of doing it. So in other words, you change your way of eating and you cut down on it. You just don’t eat until you .

But see diabetes taught me, ‘You don’t need all that.’ So I went to more bagels because you know, and no offense, I thought bagels was you know a White person’s… ‘Oh well just White people eat bagels for breakfast. We eat bacon and…’ You know what I’m saying?

Attitudes, beliefs – health - intergenerational You know she [clinic doctor] reminds me of the doctors when I was a child, when they made house calls … you can’t imagine a doctor doing that now.

I don’t like taking medicine. You know my family didn’t like taking medicine.

… then I checked back in with [the Physician] to make sure I had done everything. I love to dot my Is and cross my Ts because my father always said, “An ounce of prevention is worth a pound of cure.”

That’s another old school remedy from back in the day before they came out with all the blood pressure medicines and stuff, and I had told her you know I’d been doing the vinegar and honey.

I get a cold, I may take the aspirin or the Aleve or whatever for the fever, but I can use a humidifier or boil a pan of water and get the towel like we used to do, which seems to work better than the humidifier …

Yeah, and when I was little, I never got sick because we took Father John’s, Castor Oil … Yeah. I would try not to ever sneeze because as soon as you sneezed, here comes the Castor Oil. My mom did Father John’s. We took, and cod liver oil … there was so much natural stuff in it, and you took it whether you wanted or not faithfully every day. I used to gag … but I didn’t get sick. When we were kids, we never got sick.

My mother always did the old-fashioned way, the pill bottles, and I’m like it’s overwhelming to see all [those pills].

213

Attitudes, beliefs – life in general Okay, so she couldn’t drive, but you know she was a single mom and she had to do what she had to do, and then she always raised me that ‘You have to depend on yourself. No matter how many friends, how many family, when it all boils down, it’s up to you.’

I’ve always been, my family, we’ve never (thank God) needed assistance. My father worked up to three jobs when I was a child, and then he got into trucking. He worked for the Post Office and he had another janitorial job …

Because I know how to stretch food because I was taught that as a child. Even though we had an abundance, I was taught that you can take a little bit of money and go a long way, and I can do that. And so right now sometimes I may get $20 worth of something. Like I may get spaghetti and eat off of it for a week, and that’s what I’m doing.

Taking medication Um hmm. Right, and he says ‘Well , stop it. I’m going to give you…’ I say, ‘No. Please don’t give me nothing else. Just let me be.’ I don’t like taking medicine. You know my family didn’t like taking medicine.

Family as stressor

As would be expected considering the significance of family life to overall health and well-being, one of the prominent findings of the study was the degree to which the respondents were concerned or “worried” about the health of a loved one. One was actively mourning the deaths of several family members over a short span of time, and he shared his grief with the interviewer as well as the physician. He, among the 15 people in the sample, was the only person who had not been seeing the doctor regularly. Much of the dialog between him and the doctor concerned her not having seen him for two years, his not properly self-managing his diabetes, and his heavy drinking and smoking. In turn, the patient related his anguish over the family deaths, his commuting back forth to another city, and the time and energy limitations occasioned

214 by tending to family matters. Several spoke about mourning deaths in the family and the

illnesses and tragic accidents of family members. One woman related at length her

experiences caring for a mother while she herself was facing multiple and often

debilitating health conditions and the death of a sister. Another respondent, retired

from the health care industry, commented that the severe abuse from her first husband

still haunted her even now, several years after his death and following 15 years of

counseling.

Physician: So what’s been happening to you, because I haven’t seen you in how long, a couple of years or something or…? It’s been a long time. Patient: Well what happened to me, I been having a lot of death in my family, rapidly. I lost my sister. Physician: Oh no. Patient: I lost my uncle. I just buried this one last week, see? Physician: Oh my goodness. Patient: I buried him. Then I’ve got another one, he’s about to pass within you know a couple of weeks or something like that. He’s on hospice now. Physician: Oh wow. Patient: Age, I mean, you just want it. He’s on hospice … but as far as that, I’ve been up in [city]. That’s why I haven’t been seeing you … I’m back after this funeral here. I’ve been back around here with my mother, comforting her, because this is her brothers, my uncles right here. This was the youngest one.

… She’s [sister] been in there [hospital] over a year now. At the same time, I was supposed to go for my colon, everything went out the window and my sister came first, because it’s just actually as far as family wise, it’s my mother, her and me and that’s it, because I lost a sister and a father …

One individual spoke of having been severely abused by a former husband, now deceased. It is perhaps a measure of the long-term damage of domestic violence that she remains haunted by the experiences, even after having been in counseling for over

10 years.

Of course I had extensive counseling for I’d say approximately ten years. One of the reasons is because I was physically and emotionally abused by a husband, severely. Severely, and so that is one of the reasons why I really went into counseling, because it was so horrific that I couldn’t integrate myself into society without being angry, so angry and resentful, and he did pass away from cancer,

215 but I think that I was freed because of his death, because I think if he was still living, even if I was not with him, I would fear for my life.

Physical environment - climate, community, neighborhood, residence

Study participants described several ways their place of residence affected their

health behaviors and attitudes. One spoke at length about another city to which she

wanted/planned to relocate. She spoke glowingly of its amenities and declared that she

“feels much better about life” when she visits there. Many mentioned climate: They believed it was often too cold or too hot or too humid for them to walk/hike/exercise outdoors. This perceived barrier is particularly noteworthy since many of the

participants stated that they could not afford to join indoor clubs. Another woman

spoke extensively about mold in her basement and how that was causing her respiratory

problems. Some missed the offerings of places they had previously lived, like having a

pool or a park next door or a safe place to walk. Although they play a role in other

contexts (e.g., barriers to healthy eating and exercising), crime, ubiquity of fast food

restaurants, accessibility of health food, and the availability of public green spaces are

also matters of geography. In all these cases the respondents linked where they live

with how they feel and their health behaviors.

The participant with the mold in her basement discussed the matter at length

with her doctor; and the conversation is particularly revealing because it illustrates not

only the ill effects of environmental toxins on health, but the failure of public policy to

address public health problems. And, as the patient reminded the doctor, “Dr. B, I can’t

afford to pay, and everybody wants money…”

216 Patient: My basement was so full of black mold, I’ve been scraping the walls down there for the last week and a half. And my son said ‘Oh my god’… so I’ve been scraping this black mold off the walls … Physician: What do you put over your face? Patient: Like a tee shirt or something. Yeah, you know my COPD doesn’t like that. … I tried to call [city] to get it did … You understand what I’m saying? And they’ve got programs to do it, and they’ve been giving me the runaround, and I need my house weatherized, so I went down there and started doing it myself because they came out there and inspected and said I had the black mold on the wall, and I said ‘Well do you all send somebody out you know for seniors to help do this?’ and he gave me all kind of excuses why not. So I’ve been scraping it myself, and then I went yesterday and I bought some X- 14 to spray on it that I can’t be around.

Place of residence – city So I feel so, so much better in terms of temperament, because I’ve always loved the environment in [city]. Always when I go there I’m a different person. I can’t explain it. It is just a beautiful, beautiful place to be. I’ve been going there for years and years, and I always wanted to retire there, and I have a friend that just moved, and they’re beautiful, beautiful apartments there, much, much better than [city].

Type of residence – house, apartment, condo - amenities … I’m just kind of really trying to eat higher quality foods. So I don’t fry very much at all. I live at the top floor of my apartment building. It’s only six floors, but the heat rises, so it’s pretty much like … I pan, sauté with my chicken breasts, and if I have like a pork chop, I put it on over the stove …

So but you know I swim, but of course the last place that I lived in, there was a pool on the premises and so I could go and walk up and down or swim, but I don’t do that, if it’s not available …

Climate. Yeah, I use it [treadmill] every now and then, but I’m going to start using it regular because the weather is so hot. When it gets hot, I cannot go out there.

I used to go to a park in the summertime, but now I think I’m going to have to find something like inside a rec center or something like that to walk.

Well, I mean I lose weight. Especially like in the summertime I know I’ll lose some pounds because I’m moving around a lot … more active … in the wintertime, if I’m not active, I’ll pick up a little bit. You know what I’m saying.

What happened was I fell and broke my ankle … and see that’s when the swelling comes in and I think arthritis will sink through … you know if it starts

217 raining or something or getting cold. It’ll swell and I’ll feel the aches … when it stops raining I’m normal, just walking.

I take Aleve three times a day, and I don’t feel nothing, so I keep on moving. If I miss maybe four days, it’s time to take some more Aleve. Weather, rain and dampness and moisture make my body hurt.

And wintertime, you know the cold was horrible … just getting there … Yeah, because you know they don’t (I almost said mow), remove the snow …

Well I mean I lose weight. Especially like in the summertime I know I’ll lose some pounds because I’m moving around and am more active … in the wintertime, if I’m not active, I’ll pick up a little bit.

Neighborhood crime. Yes, [I used walk around the area here] sometimes. I used to walk around the complex, but when you watch TV and here about this murderer … you don’t really want to do that anymore, so what I try to do is when I’m off, I’ll do it in the morning times while people are out, and I used to walk the hall at night, but I don’t do that anymore because I don’t know who done snuck inside the building, you know, so I don’t do that anymore.

… I’ve always believed in walking. Oh I used to walk so much. I used to walk twice a day. I don’t know if you know where … I used to live on 89th and [Street], or was it 86th? I lived at both places … You would believe, sometimes it would be me and my sister and a couple of other girlfriends, or and I have done it by myself. We have walked out to [mall], to the airport, to the aquarium …we would walk down there. It wasn’t nothing. The more I walked, the more I wanted to walk. I just was a health nut during that time and I loved it … Well we had a bad experience. One morning my girlfriend and I decided to get up early and go walking. We walked down [street] going up towards [street] like, sort of like in that little park area, and we heard these shots and they were very near, and I happened to look up and I’d seen the guy with the shotgun. Whoa, we took off running, and I didn’t do that anymore … And then the rumor got out that some guys in the neighborhood said that they were going to catch us out there. Yeah, and so I didn’t do that anymore. So sometimes we’d go to the mall and walk inside the mall.

Well I used to walk, but I don’t walk out here because it’s dangerous … Well it doesn’t look dangerous, but when you’re out there by yourself, I don’t take no chances at all, and but with somebody it’s okay. Because look out there. It’s nobody up and down the street now and you see strange people. When you live in a neighborhood, you know your people that you see, then you start seeing all these strange people …

218

The two sections below (Self-Management Barriers and Self-Management

Strategies) discuss barriers to and strategies for maintaining a healthy diet, exercising, taking medications as recommended, and monitoring blood sugar levels, behaviors which are arguably baseline concerns for managing type 2 diabetes. Discussions of these behaviors dominated both the office visits and the personal interviews.

Self-Management Barriers: Diet, Exercise, Medication Adherence, and Blood Sugar Monitoring

As noted in the introductory comments to the Results section, most of the respondents in the sample had their diabetes under relatively good control. And as stated, the Clinic was selected for the study specifically because of its exemplary diabetes quality of care scores. Although for the most part being in control of their diabetes, the respondents nonetheless spoke of factors that made it difficult (and/or

“easier”) for them to do so which included intrapersonal (e.g., beliefs, attitudes, food cravings, lack of will power, et al.) as well as social-, economic-, interpersonal-, institutional-, community-, and public-policy level social determinants of health. Four of these levels of SDOH (economic, employment, public policy, and family facilitators of and impediments to leading healthy lifestyles) were discussed prominently in the introduction to this section because of the centrality of their effects on the respondents’ overall health and well-being and because they affect all aspects of health, diabetes self- management, and general well-being. This section, as noted above, addresses behaviors specific to diet, exercise, medication, and monitoring.

219 Barriers to healthy eating

The participants described several factors that made it difficult for them to

adhere to healthy eating patterns. As noted above, the expense of food and the presence of others living in the household influenced the respondents’ eating, cooking, and diet patterns. Family influences were at times beneficial; at other times, perhaps impediments. Other obstacles or “challenges” to healthy eating included the

temptations presented when dining “out” with friends, co-workers bringing in snacks for

colleagues to share, and sweets offered at a Bible study meeting. Many acknowledged

“falling off the wagon” at times, aware that they were not eating properly but at the same time vowing to “do better next time.” They also mentioned “lack of will power,”

“being busy,” and “being lazy” as affecting their eating habits. One of the most prominent barriers was the craving for certain foods, most of which the respondents conceded were not “good for them” at least not in the amounts they at times consumed. Some referred to these cravings as “addictions,” perhaps highlighting the difficulty of their giving up or cutting back on foods they “loved,” an often-used

description. A few mentioned that the taste of food considered healthy was not at all

appealing to them. One respondent described the experience of thinking she was

choosing a healthier substitute for potato chips only to discover that her purchase contained larger amounts of sodium. And in what could arguably be considered a

“barrier” to good eating, she “fooled her mind” into thinking she had made an appropriate substitution.

220 Being fooled by so-called healthy food Yeah, I had to do, I have to kind of wean myself off of stuff because, to tell you the truth, I used to love potato chips. I know I can’t have potato chips, but I will buy a big bag. And to fool my mind and myself, I would go and get, instead of 325 milligrams of sodium in it, I would get the ones that had 70 milligrams of sodium. I mean it’s still got the other stuff in there. I would sit there and I couldn’t help myself. I’d just eat them. I’d just eat them, and then the bell went off, ‘, you can’t do that. Why?’

Cost … the most difficult thing right now for me, since I’m not working but I’m receiving unemployment is the nutritional side of things, getting the food and stuff.

And so although I would love to eat better, I would love… If money was no object, I would love to have a Nutritionist and someone to cook based on what the Nutritionist said for me.

Unappealing taste Okay, so I was like I got breakfast. Then I got lunch, and then I got dinner, but I’m not having any pleasure in my food, because what you’re doing, you’re eating this without seasoning, you know, and if you’re not putting any seasoning in my food, I’m eating it, but I’m not putting any seasoning on it …

I went and got me some, yeah, and some fresh fruit. I’m getting back on the wagon. I fell off, but I went shopping and it really turned me off …. I didn’t like the way anything looked.

Fast food. … when you’re traveling you have to think about where to eat, restaurants …. you know you kind of have to watch …. you know you can run to McDonalds … but you have to kind of search out other places …

And my son is the one that really gets me because it was so bad eating that fast food, the people in the drive through knew me. I said that’s embarrassing. They knew what I wanted to order. They knew everything. I said ‘This is so embarrassing,’ and you know how you get upset. I had never like been a fanatic for food like this before. I don’t know when I crossed that line. I said ‘Now that’s changing one addiction for another …

Being busy, working … because when you’re busy you don’t feel like you’re eating as good … you can’t prepare the things that you really need to prepare, you know.

221 … and then I came home from work and I was still good to go and then I started, I still wasn’t cooking but I was just eating a lot of junk food, because after a while it was just so easy to that than cook … Just so busy, we’re so busy and things are so, there’s so many things that’s bad for us that’s so accessible.

Social occasions and dining out Well I really like chocolates, and I think it was my… You know we started having a small group bible study and I like put out chocolates for them, and I wouldn’t eat any then, but after they’d leave, I’d have some …

… you know, because even when I talk to people, I go out with people, I mean I have to be selective. ‘Just because you eat it, then I don’t have to eat it.’ Even if I go to your house I have to be selective,’ and so simply because it’s there and it looks good and my taste buds would love to have some of it, it’s not going to be good for me.

… For instance, going out to eat with my girlfriend. We go out to eat, and I know that when we used to go out to eat I used to eat whatever, but now I have to maintain and say, ‘Okay, I’m a diabetic. I don’t want to go over.’ So that was a big problem for me. Now I would do it at home, oh eat like I was supposed to eat, but then when I went out to lunch or dinner with my girlfriends, I just wanted to fit in like I used to, and I’m just going to use that word, and I had to come to grips with it. I was trying to fit in, be my old self, forgetting, putting diabetes to the back burner, you know trying to be ‘Oh, oh, you know.’

And a little pork, not that much, maybe if you want to do something on a holiday …

Food cravings, “addictions” … so I was really eating those cinnamon toasts. Oh my goodness, I just couldn’t get enough of them …

… my weight, it fluctuates because I’m just addicted to food, so I really have to watch myself in terms of especially sweet delicacies and things …

You know I try to limit [starches] and sweets I’m trying to limit, but every once in a while I just crave something sweet, and I’ve always loved chocolate, so that I have to watch. Yeah, so I cut back on the chocolates.

“Falling off the wagon,” “cheating,” lack of will power … Because I know I eat junk sometimes. You know you have a taste for… I like candy sometimes. I don’t overdo it. I just might eat me a third of a chocolate bar or something … I started cheating with those McDonald’s french fries, so I stopped that and I just try not to do anything fried.

222

… so and I stopped drinking pop, because I loved Pepsi. So I did have one yesterday, though, but every now and again I do cheat …

I could alleviate a lot of it [health problems] if I constantly did what I was asked to do, but I don’t a lot of times.

Temptations … sometimes because you know you’re here in the house and the refrigerator is there. You don’t be wanting nothing, but you just eat: ‘Oh, I’ll eat this’ …

Have to “work” to find restaurants other than fast food … and you have to think about doing some things, and restaurants and traveling, you know you kind of have to… Yeah, you can’t run and you know you can’t run to McDonald’s. You have to kind of search out places … you have to work harder

Barriers to exercising

As noted above, economic concerns affected – and severely constricted - all aspects of the respondents’ lives, and exercise was no exception. Since they could not afford health or exercise clubs, many of the study participants walked in their neighborhoods or hiked in nearby public parks and spaces. Several accordingly faced another barrier: They hesitated walking in their neighborhoods because of the fear of crime (as summarized earlier). Other barriers included having no exercise opportunities in the apartment or condo complex where they lived, physical limitations, being “too busy” from work and other life responsibilities, lack of “consistency,” procrastination, and, sometimes, “just being lazy,” and having “no will-power.”

So I mean it’s [exercise facilities] just expensive, and when I turn 65 I want to get into the program they have for seniors, because I’ll be 65 in September, and I’m going to… I think they’ve got a Silver Sneakers program.

Well I used to walk, but I don’t walk out here because it’s dangerous … well it doesn’t look dangerous, but when you’re out there by yourself, I don’t take no chances at all …

223 Interviewer: Did the doctor every talk to you about exercising? Respondent: As active as I am? Yeah, he tells me all the time. go to the gym, do this.’ I’m like, ‘Dag, I just went up five flights of steps. I’ve been running all day.” Look, I get up at 6:00 in the morning. I’m just like this all day, you know.

I’m walking a lot, and I’ve been exercising, but I have a problem with this leg.

You know I really don’t have time now. I have a sister-in-law lives not very far from here. Whenever she’s available, you know we go …

Well the diet I’m doing better, but the exercise it’s just I’m not doing anything. My granddaughter and I are supposed to begin walking. We were going to start yesterday, but I started with this cold and I didn’t go …

I try to exercise, if I feel like it. If I don’t feel like it, then I don’t want to do anything.

I don’t think my knees and back would allow me to walk that far [on a golf course] …

Barriers to medication adherence

As described earlier, economic concerns constituted the most prominent barriers to medication management. Much of each office visit was consumed with medication management issues, primarily how to pay for them. Following cost issues, another prominent barrier was perceived side effects. Patients spoke of this occurrence often with the doctor and the interviewer.

… [the pills] made me drowsy and made me don’t want to feel like getting up doing nothing, evil and you know. Interviewer: And it was the pills you think. Participant: It was that pill, so I stopped taking it you know for my health reasons … that’s what I was telling [the doctor]. She went, ‘What is it doing to you?’ I just told her, I said ‘I’m irritable. I’m not gon’ take no medicine that’s gon’ make me [irritable] …

Physician: Should I write you your cholesterol medicine again? Patient: You can go on and write it, but who’s to say I’m a get it? But at least I’ll have the prescription because I lost it. I, honestly, I lost the prescription somewhere. I said ‘Something told me that I ain’t supposed to take this medicine.’ But I’ve got so many bottles of that Lipitor, what I’m a do with them? Physician: Why can’t

224 you take those? Patient: Remembering it was making me sick and my joints, make my joints hurt really bad. I was hurting … I just don’t like taking them things.

See I took up Anatomy when I was studying and everything, but you have to know your own body, and you have to be aware of the side effects of all this medication these doctors just keep on pumping in somebody.

Other challenges included having to coordinate eating with taking pills which at times was problematic given active life styles, perceived medication interactions, difficulty swallowing, fear of insulin injections, not wanting to take pills, failure to see doctor on a timely basis, pharmaceutical company changing drug formulation, and several other factors. Table 12 below summarizes the challenges the respondents mentioned in their adhering to medication requirements.

Table 12. Illustrations of barriers or challenges to medication adherence

Barriers Illustrative Quotations

Bearing the cost of meds that “don’t I can’t even take it back to the drugstore. It cost work” and can’t return me 30 bucks each. Being busy, forgetting I missed this morning because I was rushing. I had to be up early. I had to go do some things and I had to get up this morning. First I had to get up and straighten up. Then I had to leave Complications of medication Sometimes what happens is that if you mail order insurance coverage it, if it’s not covered by your mail order, then you have to go get it at a regular pharmacy and then they only give you 30 days. Confusion re medication Oh the pills? Oh I’m going to need the green one identification for the water, you know. I can’t think of the name of the pill. I know it’s green. Coordinating taking medications with All my medication, I have to take it on an empty eating stomach, but the thing about it, I don’t want to pile them up on each other, and I don’t want to wait too long before I eat something, and I don’t want to stop at the fast food place. Difficulty contacting doctor for refill … so after that when I stopped taking it, I’m trying to remember. I wasn’t able to contact her. I think she was gone away like maybe on vacation or

225 Barriers Illustrative Quotations

something, and so I just stopped. First I cut it back and then I cut it out … Difficulty swallowing pills … I took them when I wanted to take them, when I felt like I could swallow them. I messed up a lot of them trying to swallow, because I can’t swallow … Don’t like taking pills, medications And I hate taking all that medicine

Dosage complexity and changing drug Well see, well actually that was the twice a day, configurations and then when they stopped making the one I was taking, and then they started making it again and you wrote me the prescription that I could take, you know go back to that one, for the once a day … But then I was having the same reaction I was having when I was taking it twice a day … It was the generic, Metoprolol generic, and then they said they stopped making it, and so then the twice a day was name brand. Drug company changed formulation … so then the new medicine she put me on, that was working for a while and then the pharmaceutical company I’m pretty sure changed it because the pill, they said it was still the same pill, but the coloring and so forth changed. Expense of diabetes supplies … because with the new kit, I have everything I need, but the frustration and aggravation at trying to get more supplies without, you know without having insurance… Expense of medication … my only problem was getting the medication, because once I lost my insurance, I lost my job. Fear of “power” of medication, I really didn’t use it the length of time that he was… complications of “weaning off” I was supposed to be doing it like three times a day. I really didn’t because it’s like you take it and then once you decide to stop, you have to wean yourself off … this is something that’s a little too powerful and it’s kind of scary because if you don’t come off of it the way you’re supposed to, or I mean it’s like something that you could overdose on, and a lot of the medicines they have out here, the cure is worse than the [condition] Fear of running out of meds and It’s not too often. It’s not too often, because like S, supplies she told me, she said, ‘So you won’t run out,’ because there’s been times that I didn’t have anything and it then takes a minute for something to come in and I be sick. I be so sick. Fear, dislike of injections Yeah, because I was getting tired of this, man. I was like, man, the syringes and ooh, it was making me irritable, you know what I’m saying.

226 Barriers Illustrative Quotations

Feeling over medicated And at one point another doctor had given me so many different kinds of medications it felt like my skin was gon’ jump off and just run up the walls, and I’m taking all this stuff. I already feel like crap and oh it was a mess. I just don’t ever want to go through that again. Letting refills lapse I let my thing lapse and then I had to get another refill to get from the drugstore. Not knowing function of pills … so I didn’t realize that that was the pills to maintain my diabetes, so I didn’t take them. Not knowing insurance medication She said “I’m going to try to get you on something coverage policies else,” but she don’t know what’s not expensive until it goes through because I’m on a grade now. Not seeing the doctor regularly Yeah, because they would call my house and I had talked to a couple of them people that called and I was telling that I need my medication and ‘Why y’all cutting me off?’ and they said ‘When the last time you’ve seen your doctor?’ Number of medications taken … I didn’t have my glucose medication. I found that, I don’t know how it happened. Well, I’ve got so many medications, you know … Perceived drug interactions … that was another thing that I had brought up to her. When they changed that other medicine, it seemed like I was taking the Lisinopril, which is the water pill, but then I was taking that Metoprolol, which seemed to be making me retain fluids more. Perceived side effects … I’m not sure if it’s really taking the edge off, to tell you the truth, but I take so much medication and there are so many side effects: fatigue, tremors, oh just because I take ten pills a day, you know with the vitamins. Physical limitations I can’t use the needle because of my right hand. I don’t have use of the thumb, and see I can’t go like that with the thumb. It’s just I can’t turn it or anything. See it’s just… See how you could do like that? I can’t do that with this. Previous drug and alcohol use What concerns me now is I used to use drugs. I used to drink, all this. What concerns me is taking a lot of pills now. I don’t want to take… I’m just not there anymore, and first thing when she said she was gon’ have to give me something for my cholesterol, my first thought is, ‘I’m not taking all these pills.’

The prominence of medication management issues during the office visit

227 A particularly prominent part of each office visit involved the amount of time the

doctor and the patient spent discussing medications. In fact, these discussions

consumed most of the time of several, if not all, visits. This phenomenon is significant

considering that “medications” were referred to (including references to generic and

brand names) an average of 49 times per office visit. Consequently, it could be argued

that medication management in and of itself constitutes somewhat of a challenge, if not

a barrier, at least during the office visit when so many other issues require discussion

and resolution.

The patients and their doctors “covered” all facets of medication management

including: medication review and reconciliation (what was taken in the past, why

discontinued, etc.) (Grosz, Perzynski, Sage, Stange, & Bolen, 2013); refills; side effects; cost and finances; health insurance coverage; pharmacy accessibility; ordering procedures (Electronic Medical Records, clinic procedures); assessing adherence; shared decision making; discussions of a drug’s purpose, function, and importance; dosage, diet, and time of day requirements or suggestions; interactions with other medications; method of ordering (mail, pharmacy, discount drug/grocery store); consultations with the Social Worker; number of days of supply (30 days, one months, 3 months, etc.); type of drug (generic vs. brand, over-the-counter vs. prescription); ability of the patient to

use the drug (e.g., ability to perform insulin injections); perceptions of efficacy;

presentation of options; co-ordination of care issues (i.e., prescriptions written by other

Physicians and/or healthcare systems); invitations for feedback from the patient; and giving permission to the patient to make dosage decisions. Noteworthy, too, was the

228 extent to which the physicians “educated” patients during the visits about every aspect of medications and medication management. This subject alone warrants a journal article.

Table 13 below contains one exchange in its entirety to illustrate the length and complexity of doctor-patient medication discussions. Considering the numbers of medications each respondent was taking, the fact that this discussion is about only one class (allergy) serves to highlight the extensive amount of time of each visit devoted to medication management. In addition to concrete discussion of the medications, several processes are at play as well: The physician relies on and trusts the patient’s memory and reporting accuracy, offers options, partners with the patient to make medication decisions, and acknowledges and considers the patient’s financial situation. Also at play in this exchange are co-ordination of care issues (i.e. the doctor and patient try to reconcile what another doctor had prescribed) and the role patient education plays during the visit.

Table 13. Illustration of prominence and complexity of medication discussions during office visits

Physician Anything new since the last time I saw you? Patient Yes. I have the worst sinus problem I ever had. Physician Has it been this whole spring season, or…? Patient Yeah, pretty much. I went to Urgent Care up at Broadway and I was given some… Physician And you saw Dr. B last month. Patient Yeah. But one of those nasal sprays, I cannot use it. It speeds up my heartbeat so. Physician Oh really? Patient Yeah. I can’t even take it back to the drugstore. It cost me 30 bucks each. Physician You sure can’t. Patient Physician Do you know what she gave you? Patient I was intending to bring them with me and I didn’t. I think she…

229 Physician I got it. Patient Oh, okay. Physician So she gave you drops for your eyes and nasal spray. Patient No, she didn’t give me drops for my eyes. Physician Oh sorry, that must’ve been from the eye doctor… Patient Yeah. Physician …in March? Patient Um hmm. Physician So all you got is the nasal spray. Patient Right. Physician Is that right? Patient Yeah. Physician Are you taking any kind of antihistamine at all? Patient No, and I think I need some. Physician What have you taken in the past? Patient I don’t remember. Physician So you haven’t taken anything over-the-counter either. Patient No. Physician You’re just putting up with it? Patient Yeah. Tylenol I’ve been taking. You know, if I feel that I had a temp, I would take Tylenol. Physician I just want to look up this medicine she gave you because I’m not familiar with it. It’s not a steroid. We could use a steroid instead. Have you been on Flonase or any of those? Patient You had given me Flonase once. Physician Yeah, I don’t think it is. Did the Flonase help you, or not really? Patient That’s been quite a while ago. I’m not sure. I think I need something to take because um… Physician Well I’m happy to put you on an antihistamine too… Patient Um hmm. Physician …or alone. If it works by itself, then you probably don’t need anything else. So that’s what you prefer is just something to take by mouth? Patient Um hmm. Physician Have you been on Claritin before, or Zyrtec? Those are the two that are over-the-counter now that are non-sedating. There’s a whole bunch of other things over-the-counter, but those two were originally prescriptions and the benefit is that they’re once a day and they don’t make you tired. So Claritin is Loratadine. It’s also Alavert over-the-counter. Remembering trying that one? Patient No, I don’t remember. Physician It’s pretty mild, but it doesn’t make you sleepy, which is a nice feature. Patient I haven’t been getting much sleep either. Physician Well Zyrtec is a little stronger. I mean pretty much everybody who has allergies has to figure out which one of these medicines works best for them, because there isn’t… It’s different. It’s different for different people. Patient Okay. Physician So Claritin. You’ve had Allegra before. That was back in ’05. Allegra is still a prescription, but most insurances aren’t covering it now that we have these

230 other two that are available. You had Claritin back in ’04. So I’m supposing that if you went from Claritin to Allegra that you didn’t think the Claritin worked that well. Patient It probably was because one was so expensive, I think, and… Physician Well that’s possible, too, but usually the Claritin is the cheapest one. Patient Okay. Physician So let’s see what you think about the Zyrtec. Now they’re all over-the- counter, so you can go in the drugstore and you can choose to buy the Claritin, which is Alavert or Loratadine, instead of the Zyrtec, which is Cetirizine, but the one I’m going to write on your prescription is for Zyrtec. Patient Okay. Physician And you can turn it in to the pharmacy, and if they cover it, wonderful. But if it’s not covered by your medicine plan, you can buy it anyway. Patient Okay. Physician And it’s once a day, and if you’re not sleeping at night, then taking it before you go to bed at night might help a little bit.

Barriers to blood glucose monitoring

Some factors that were barriers to diet control were also barriers regarding the monitoring of blood glucose, primarily cost factors; i.e., the inability to afford the required supplies as well as the medications. In three visits the doctor and patient spent a significant amount of time ascertaining the appropriateness of the supplies the patient had (lancets) with the blood sugar monitors they were using. Because they were incompatible, the two problem-solved on the best and most affordable way to obtain the supplies the patient needed. Other mentions included not having a glucose meter, disliking having to prick their fingers, and not knowing how to interpret the results of a reading.

… and then I had another stumbling block, because when I first started out, I started out with the pills, and then as time progressed I had to go onto insulin … it wasn’t controlling it. So that was another thing that I had to deal with. ‘Do I really need to inject this stuff into my arm? How come I just can’t take the pills like I did before?’ You know so I tried that and it didn’t work, so I started injecting myself and then I started feeling better.

231 I mean they’re [Clinic and doctor] doing everything they can to help us, you know but some things you just don’t have the money to get. Like I say right now I need the lancets to prick my finger. Well I just, you know they couldn’t do it. They don’t pay for them anymore. Before they used to pay for it, and so now they don’t. I used to get all that stuff.

Yeah, and I want the kind not to prick your finger, because I pricked my finger too much and it got sore, so I just want to get one that I hit my arm or something.

I don’t like to prick my finger.

Because with the new kit, I have everything I need, but the frustration and aggravation at trying to get more supplies without, you know without having insurance…

Physician to Nurse: Can you help him? He got all these… His machine is not working for this, and he’s got like a whole stack of test strips but no machine … so I don’t know if there’s any way they can send him just the machine. He doesn’t need any test strips.

So I’m taking my shot, and me not reading up on it when she [daughter] told me that. I just went ‘Okay, I’m a diabetic.’ So when I’d take my shot the machine kept saying HI, HI, but I didn’t know what that meant. I didn’t know.

I did invest in one of the machines … I don’t really know how to read it or I don’t understand it, how to do it, so but I did buy one at $89 … I don’t know how to use it, but I got it.

In one visit the doctor and patient spoke at length about the patient’s not monitoring her blood sugar, which is significant because she was one of only two participants in the sample who were not doing so. The first patient, as the doctor characterized her non-compliance, was “in denial.” The second patient did not have the appropriate glucose meter because he needed the doctor’s prescription to get it free, and he hadn’t seen her in over a year. In a somewhat spirited give-and-take dialog in the first case, the doctor appeared to be using the Socratic Method to encourage the patient to come to a self-understanding of the issues underlying her non-compliance,

232 most notably denial. The patient had put forth a litany of excuses for not checking her

sugar, but the doctor did not permit such latitude. At the same time the physician

recognized and acknowledged the patient’s financial problems, she also emphasized the

importance of monitoring to control her diabetes. Not only did the doctor succeed in

this task, she did so with understanding and kindness and ended the discussion of the

subject with a compliment about the patient’s weight loss. As illustrated in Table 14 below, the discussion involved several processes including problem-solving, educating,

and bedside manner.

Table 14. Excerpt - doctor/patient discussion of blood sugar monitoring lapse

Physician And are you checking your sugar?

Patient I haven’t today. Well I’m passing today because I think I’m supposed to do blood work. I have it associated with this appointment. Physician You haven’t checked your sugar at all? Patient Not today. Physician What about yesterday? Patient No. Physician What about the day before? When’s the last time you checked? Patient The last time I checked it, it was about a month or so ago. Physician Now why? Patient And I wanted to see what it was. Physician No, but why aren’t you checking it on a more regular…? Patient Oh why I haven’t? I just came back from out of town and I’ve just been discombobulated. Physician You know most people who are diabetic can take everything that they need with them wherever they go? Patient I know. I know. Physician So when you checked it a month ago, what number did you get? Patient It was like 130-something fasting, and that disturbed me because I can remember you know a couple of years ago it was like 112, 90-something, so that spoke to me.

233 Physician It spoke to you, but you didn’t check it again. So how, I mean did it speak to you in a way that made you think ‘I don’t want to know’? Patient No, to make better choices, and I want to go back to the good numbers. Physician Okay, so how do you determine whether you’re back at the good numbers? How would you do that? Patient By checking it. Physician Okay, we are on the same page. You have lost 10 pounds since the last time you were here, which is absolutely wonderful. Patient Yea! Physician So I don’t want to just beat you up, because you’re doing some good stuff, but… Patient Yea! Physician … I think when you tell me that you are concerned about this and you want to do better, but you don’t take the next step to actually see if you are doing better, there’s some denial there that you need to work on, that you need to sort of check in a week later, if you’re not checking every day, and make sure that you’re actually getting somewhere.

Self-Management Strategies: Diet, Exercise, Medication Adherence, Blood Sugar Monitoring

Strategies for diet control

While the participants mentioned the above barriers to healthy eating, those

barriers were relatively few in number compared to the multitude of strategies they

used to manage their diets. Strategies included, avoidance, eating in moderation,

substituting, portion control, scheduling meals at certain times of the day, following lists of “what not to eat,” consulting diet menu plans, cooking the things they liked differently (i.e. broiling rather than frying), eating more “good things” (e.g., fish, vegetables, fruits, greens); eating less of “bad” things (e.g., sugar, fats, salt, bacon, et al.

), eating “bad” things less often or only occasionally, “rotating” (i.e., “eat half a sandwich now and a bowl of cereal with milk later”), allowing themselves “wiggle room,” refusing to outright deny themselves, attending diabetes classes, seeing a

234 nutritionist, using a juicer … the list continues. Table 15 below illustrates the various strategies (as characterized by this writer) the respondents used to self-manage their

diabetes specifically relating to diet and healthy eating and cooking. Although in almost

cases a strategy was mentioned more than once and/or by more than one respondent,

in considerations of space (and time) I have limited the quotations to one for each

strategy.

15: Illustrations of diet strategies to control diabetes

Strategies Illustrative Quotations

Adjusting when dining out … but if I taste food, if I’m out and eating, out and I taste food and if I can taste the salt, I won’t eat it. I’ll say ‘Ooh, it’s just too salty,’ where before you know I would eat it. Allowing self “wiggle room” You know unless I see something sweet and say ‘Oh, the hell with it. I guess I’ll buy it and eat it’ … it doesn’t happen every day, but it happens if I see something. And I know that I shouldn’t, but I do. Attending diabetes classes, But you know I went to classes, three different classes. seeing nutritionist You can eat anything you want in moderation. Balancing eating throughout the If I eat like a starch or something like that, something day starchy for breakfast, then when I eat my dinner I won’t eat a whole lot. Being more conscious, more I don’t dwell on it, but I do think about it, and so I’m mindful of what I eat more conscious of my weight, salt intake and things like that, Buying less food Well this is what I do. I buy less food, and the less food I have in the house, the less I’ll have to go in and say ‘Oh, there’s some chips. I think I’ll have chips and a hot dog or something.’ I don’t do that anymore. I buy just enough. Controlling portions, eating in Now I would, instead of just the big plate of spaghetti, a moderation small portion of that, what I could fit in my hand, plenty of vegetables and a sandwich. Cooking the same things Yeah, I was the one who likes diet pop. I got off the diet differently pop. Eating less “bad things”; eating Yeah, because I don’t eat a lot of butter. I don’t eat a “bad” things less often lot of eggs. I don’t eat a lot of stuff that causes your cholesterol to go up.

235 Strategies Illustrative Quotations

Eating less some days than And some days I eat less than others. others Eating more “good” things; Well I’m trying to eat more fruits and vegetables, and eating “good” things more often that’s mostly the biggest change that I’m doing right now. Eliminating some foods And so I just cut out the fried foods … completely Keeping a daily food log It’s a food log thing I found online. Um hmm, my daily food log, and that’s a good thing, because matter of fact, it’s other people with diabetes on there and they share stuff you know of what they cooked or a recipe Keeping a box of healthy menus … and I just keep a little box of every new recipe. I print it out and I just got a little thing and I cook it, you know, and I cook healthy. Following the doctor’s advice Dr. M told me no more pop, so I haven’t had a pop in about a month, which is killing me, but I’m getting used to it. Learning to like healthy foods So I learned a lot, so I’m doing a lot of different things, and eating habits and I’m cooking a lot of different recipes and I’m liking it, because I was a funny eater. You know certain things I wasn’t going to eat, but now like asparagus, I love it. Magnets on refrigerator with I put a magnet of a healthy plate on my refrigerator … it menu and healthy food shows me what a healthy plate looks like. suggestions Make eating healthy a routine, a So it’s just a routine and it’s part of you. It grows on habit you … you know you got to eat properly Mindfully eating products Atkins shakes … Well, how about those, are those believed to be “healthy” Atkins’ shakes? I’ll have one of those. Are those real fattening? Not denying self, treating myself When you deprive yourself of something that you want, occasionally that’s when you binge. So I don’t deprive myself. Not eating at night I used to find myself at night, because I was a night eater for one thing. I would load up on food and then go to bed. That’s bad. That’s real bad. You never let your body work, do what it’s supposed to do while you’re sleeping. So I kind of got out of that. Reading food labels You know I read the labels and stuff, and so that’s how I’ve been like monitoring my sugar. Remembering and following And that’s just a habit [monitoring glucose] … I just take doctor’s BP and sugar level it every morning and it’s normally, because Dr. B stated recommendations to me that it should be 100 or less when I wake up in the morning, and it’s usually 90, 83, sometimes 73. Rotating, balancing, diet on a You know so I rotate. Sometimes I eat a half of daily basis sandwich, or sometimes I’ll eat a bowl of cereal, and I eat the Honey Nut Cheerios with the 1% milk, and I’ll

236 Strategies Illustrative Quotations

have a cup of cereal and a cup of milk and that’s what I eat. Scheduling when I eat Like for breakfast this morning I had my breakfast. I had a large tuna sandwich and water, and I’m full, and so I will eat, but I may eat around 2:00. I may eat around 4:00 and then I won’t eat anymore ‘til the next day because you know I’m full. Seeking information A lot of times I listen to the, like the Food Network. They used to have people on there that were diabetic. He always used to talk about changing your lifestyle about how you eat, and you know I used to always hear “You are what you eat.” That is so true. Sharing information with others … it’s other people with diabetes on there [on line] and they share stuff you know of what they cooked or a recipe they came up with … Stopped eating fast food Yeah, but I cut out mostly you know the fast food and stuff, you know, and so I haven’t had any problems since then. Substituting I started using Splenda, and I started drinking the coffee black, you know without cream, and I drink my tea without basically anything in it, maybe lemon, sometimes. Using printouts, education You know they always give you the list of things not to literature showing healthy foods do and to do, and I try to stay on those things. to eat Using a juicer I’m eating a lot of vegetables, eating a lot of fiber, you know a lot of fruit, making these smoothies. You know I’ve got a juicer. Weaning” myself off “bad” food, I have to kind of wean myself off of stuff because me, to not going “cold turkey” tell you the truth, I used to love potato chips.

Strategies for exercise management The respondents - despite time, cost, inconvenience, and other constraints – generally were engaging in some type of exercise, primarily walking. They walked in and around their apartment complexes, in parks, and in the neighborhood. Many spoke of ways they tried to integrate some form of exercise into their daily living activities. One noted that she babysat grandchildren and considered stepping over various baby gates all day long a form of exercise. She continued that she exercises with the children while

237 they watch pre-school television shows such as Uncle Bill and Noggin. A few respondents said that they considered walking to their appointments at the Clinic to be a form of exercise. Other ways respondents integrated exercise into their daily lives

included walking up and down stairs often during the day, cleaning the house, yardwork

and gardening. Several, some with the financial assistance of children and

grandchildren, had exercise equipment in their homes such as treadmills, weights, and

exercise bicycles; and several incorporated using free weights, doing jumping jacks, and

stretching into their exercise routines. One woman spoke enthusiastically about going

line dancing with her daughters and grandchildren, and she made a video so she could

do so at home. A facilitator of exercising in general was doing so with family and/or

friends. One participant described getting up in the middle of the night, using the

bathroom so as not to disturb anyone, and turning on the radio and do leg exercises to

music:

I had started waking up at like 3, 3:30 and I’d go in the bathroom where can’t nobody see me and start doing little leg lifts and doing what I can, turn the radio on and just do what little I can that’s in there, and I got me one of those mats that go on the floor that I haven’t gotten on yet. I have a ball. I bought all kind of stuff. But I keep the bike, the ball and the mat I’ll keep …I had the little weights.

Walking Physician: What kind of exercise do you do? Participant: I walk … that’s all I do .

And I walked. I walk every day probably about a mile, mile and a half.

Yeah. I exercise. I walk. I’m walking a lot, and I’ve been exercising

I just get up, and I like to go to the mall. I go to and walk

238 Integrating exercise into daily lives For the most part I’m always on the go, and when I can’t go out walking I use the hallway. You can see it’s very long … then there’s an extension to it, and the driveway is very long, and you know I try to get that in every day pretty much. But here lately I just do a little bit at work. When I first get up in the mornings I do a little exercise, and even if I just walk around the dining room table, I do laps.

I’ll do that, like during a lunch break take a break and go walk … it’s really nice though. So I walk there. Sometimes I go up to [park]. My daughter lives over there and we walk around there, you know. But all three of us are working on it [walking more] …

Walking down the steps. I stay up on the third floor. Like I’ll walk down to the bottom steps every day.

… instead of walking around outside, I get on the treadmill and be watching TV at the same time … and I get caught up, especially if I’m watching something like a Chuck Norris or Steven Seagal movie where there’s action in it.

I pretty much get me a little walk in daily … and when I go to the store or somewhere, I park far away … you know I have to tell myself, ‘You can do it. You can do it’ …

Establishing a routine And I am exercising, trying to do at least three times a week.

… my body’s tired, you know because the job that I was doing, when I come home I’d be hurting. So what I did, I would soak in the tub and exercise, I mean soak in the tub with Epson Salt. Then I’d get up and get out the tub and put on my little workout clothes, and I would work out …

Well this is what I do. I have an exercise bike at home and right now three times out of the week I exercise for 30 minutes.

Using affordable community resources … at the end of the street down here across the street is [facility]. It used to be YMCA. It’s free. The Y left all their equipment … I’ve been trying to go down there. Right now I’m going like a couple of times a week. I’m trying to do every other day until I can work my way up to every day …

Bicycle riding I mean you know I be out. I got a bike now. I just bought me a bike … not a motorcycle. I got a Schwinn 10-speed bike.

239 And you know, and when I started riding the bike and stuff, that helped me … if we’re going to go on a really long, long bike… Now if I was just gon’ ride up here and back home, that ain’t no big deal. But I’m talking about if you’re riding from here all the way over to like the Gold Coast on the west side, Edgewater, see that’s when you need [to take food with you] …

Exercising at home-using machines, free weights, stretching, dancing, yoga, et al. … I can exercise in my house. I do little things in here … jumping jacks and every day I do something like lift my legs or something like that …

Right, but I do stretching and with my arms and then peddling. That’s exercise.

I really enjoy working in the yard.

If you could see my basement, I’ve got everything [exercise machines] lined up … I have three different kinds of steppers … I step on them. You know and I got the one for your thighs, and but basically I do Walk Away the Pounds. So I put that [video] in and I do that in my bedroom, and I’ve got my bands, you know, and that’s Walk Away the Pounds. I’m doing six miles. Now it’s only a 3-mile thing, but I’m up to six miles myself, so I just play it over and start over, so I’m doing six miles. But it’s just like you’re walking. You’re walking in place, but she has you doing, you’re stepping up, you’re doing this and the stretchy bands just feel like weights. It’s like you’re lifting some weights; you know the way she has you do it. So basically I do Walk Away the Pounds, and then in this room here with this TV I put on, I made me a line dance CD. So I do the different line dances that’s out, and you’d be surprise. Sometimes I have to fall back up in this chair.

I just ride my stable bike, and I have some weights, like 2 pounds each, and so I exercise with that …

Use exercises obtained from the doctor Yeah, so she gave me a booklet, like maybe seven pages on the exercises to do for lifting your legs and the things on the floor, and this would help the back.

Strategies for managing blood glucose monitoring

Several self-management strategies pertained specifically to monitoring blood sugar. Respondents most-often mentioned their having routinized, normalized, their scheduling of monitoring. The respondents followed various regimens, from testing once or twice a day to once a week; some tested several times a day. Another

240 prominent theme was “listening to my body.” One woman said she monitored her sugar only when she “felt funny.” Many described checking sugar levels whenever they felt stressed or upset or had eaten something sweet. Other strategies included taking snacks

“just in case” when out and about away from home; having a goal in mind; referring to reports from the doctor; adhering to the doctor’s advice; keeping the doctor informed of sugar readings; recording numbers in a daily log; having family members help when and if necessary; making concerted efforts to eat healthy foods and avoid “bad” ones, and eating a snack before bed to stabilize morning readings. Some respondents also mentioned attempting to coordinate their meal and snacking schedules with taking insulin.

I check it two (2) times a day, but sometimes, like I say, when I feel funny, I take it to make sure …

That’s how I do it … because after your insulin shot injection, you eat within 15 minutes to keep it level. So that’s what I try to do.

Yeah, I keep a book, and I check it twice a day, first thing in the morning when I get up, before I have breakfast, and then in the evening. I was doing it the opposite. I would check it before I eat, then I would eat dinner, but they want me to eat dinner, then check it.

… I’m careful to eat a bite before I go to bed. Usually when I don’t eat anything it might be a little low, so now I might eat a little salad or something, peanut butter and jelly or something before I got to bed.

And that’s just a habit. I just take it every morning and it’s normally, because Dr. B stated to me that it should be 100 or less when I wake up in the morning, and it’s usually 90, 83, sometimes 73.

I just test every morning to make sure. It ranges between, I get 90-something. Between 90-something; 112 is the most I get. I just got my report back (Did I bring it? I should’ve brought it) when I was here.

241 You know I read the labels and stuff, and so that’s how I’ve been like monitoring my sugar. She sent me a letter today saying that I was doing a good job with my sugar.

I take my glucometer with me when I’m bicycling. That way I have the candy and stuff, I can just do it you know when I feel… because it’s a certain feeling that you have and once again you’re like anxious, nervous when it’s too low, and you know it [I want to be able to check it]

… I bought those little tablet things, glucose tablets … and I try to keep a couple of them in my little pouch that I take with me just in case something happens …

In what might be considered a barrier, or at least a challenge for the patient, another respondent believed that she “felt better” when her sugar was higher than it

“should be” and that her “body got used to it.” During her visit the doctor and patient engaged in a discussion of the numbers constituting low and high blood sugar and the levels the patient should aim for. The discussion also served as a “teaching moment,” in which the physician instructed the patient what she should do in the event of either, ending with the encouragement “don’t panic.”

Table 16. Excerpt – management of high and low sugar levels

Patient Physician But you know what, Dr. B? I can tell when Well your body’s been used to it being a lot my sugar’s down in the 90s and the 80s higher than it is now, so you’re going to have because I feel funny. I just feel funny, but I to get used to what normal feels like. So a know you told me that’s normal, but I’m used person who doesn’t have diabetes, like my it to being like a 100-something, and it seems sugar sometimes goes down to 54. That’s like I function better when it’s in the 100s. not abnormal for me. So you have to get used to what 80 and 90 feels like. But mine can’t go down that low to 50- If it got that low, I’d want you to eat something, right? something right away. I mean if it’s under 60 you’re going to, you should feel it, and I’m kind of glad you can feel it at 80, because I think people need to have some kind of warning that they’re getting low. Well I feel it, and it scared me, but I know Right. you told me that that’s normal, but it just scared me because I don’t like that feeling

242 Patient Physician that I have, so I eat something to bring it up. Then I wait. Then I prick my finger and I say ‘Okay, this is where I want it to be.’ Like I’ll bring it up to like maybe 120 or Which is fine, but it’s not an emergency. I something, and I just feel better. mean you don’t want to overeat to get it up. A lot of people will make the mistake. Like you can do 2 ounces of orange juice and that would get it up you know 30 or 40 points. You don’t have to drink 8 ounces or 16 ounces. You don’t have to have a candy bar. You can just put a mint in your mouth and it’ll probably go up enough. So you, just don’t panic.

Strategies for medication management

The participants described several strategies they used to manage their medication regimen. Medication decisions were made in partnership with the doctor, and the patients often obtained “permission” from the physician to make their own dosing decisions based on test numbers and their perceptions of efficacy and side effects. In cases that the respondents made medication decisions prior to asking the doctor, they were sure to follow-up later to confirm their decisions were medically appropriate. Other strategies included: carrying a card with them detailing medications, dosages, and schedules; taking the necessary steps to obtain healthcare funding (e.g., completing paperwork, talking with the doctor, seeing the Social Worker and/or

Financial Counselor, consulting with Medicaid representatives, et al.); sharing medical information with their children; routinizing the task, making it a habit; stockpiling extra diabetic supplies “just in case” and because they are expensive; switching medications to comply with insurance formularies; using “trial and error” and experimentation to determine the efficacy and their tolerance of a drug; weekly preparing a pill box; seeking

243 knowledge about a medication (reading the labels, asking the doctor, consulting a print- out from the doctor, using a list of discount pharmacies provided by the doctor, a friend or a relative; researching; watching TV, et al.); keeping medication in the original container “so I don’t forget where they are”; cutting pills in half to control dosage requirements; taking diabetes medications only when they “feel miserable”; bringing their medications or a listing thereof to the office visit; carrying medications in a purse; and not “doubling up” when they miss a dose. Table 17 below illustrates the strategies patients use to manage their medications.

One interesting finding regarding medication adherence was that some respondents appeared to distinguish between medicines in terms of their perceived necessity. While they might feel comfortable deciding not to take other medications, they allow themselves no latitude when it comes to diabetes, blood pressure, and cholesterol medications. On the other hand, one respondent said he took his “sugar pills” only when he “felt funny.”

Respondent: Right, and [the doctor] says ‘Well I’m going to give you [a medication] … I say, ‘No. Please don’t give me nothing else. Just let me be.’ I don’t like taking medicine. You know my family didn’t like taking medicine. Interviewer: So I mean but you are taking them? Respondent: Yeah, I take them. Interviewer: Like you take your diabetes meds for sure? Respondent: Right, for sure. Interviewer: What about the blood pressure and cholesterol? Participant: I take those. Anything else, scratch it. I take it when I feel bad. I’m being honest.

And so I just do what it says. But with my pain meds, it’s pretty much there’s an as-needed type of thing, and so if I’m not having a lot of pain, like when my injections work the way they’re supposed to, I don’t have a need for a lot of my pain medicine. I take the Lyrica, but I don’t need the Tramadol and the Flexural. I can do without that … but my glucose medicine …. I have to take that.

244 Like I was saying is like you know only time really when I take it is when I start feeling miserable. You know if my sugar’s too high, going up, I’ll start feeling funny and I’ll say ‘Oh I’d better take my sugar pill.’

Table 17: Illustrations of medication strategies to control diabetes

Strategies Illustrative Quotations Knowing, listening to my I check it two (2) times a day, but sometimes, like I say, when I body feel funny, I take it to make sure, and I said I knew it was down to my 70s. I just want to prove to myself that I … Really to me it’s just proof that I know what I’m talking about, that I know my body, because normally I only do it twice a day. I was on three, but Dr. B took me down to two, and that’s been a while. I can’t tell you how long. But then I just want to prove to me that I know what I’m talking about and I know my body, so I say, ‘Okay, I know it’s down. I know it’s about in the 70s. I know.’ I can tell when it’s in the 80s. I can tell when it’s in the 70s. I can tell when it dropped to the 90s. I can tell when it’s up. I can tell when it’s too high. Adjusts dosage as Three. Three times a day, yeah, before I eat, and that’s needed with prior adjustable, you know what I’m saying … As far as the dosage that permission from doctor I take, okay, because I could take a 7 or an 8, and if I’m not going to eat anything you know with a lot of sugar or whatever in it, I might just take a 6, 6 milliliters … Yeah, because we’ve worked on this for a while, me and Dr. M. So she allows me to adjust, as long as I get it in my system every day. Asking the doctor to I get, you know what’s the name of the 70-30 you’re giving me? I make a medication don’t like that one. I like the other one that I was getting before adjustment then. Being proactive, seeking I’m telling you, it’s been a full-time job to make sure that I get assistance when needed and keep the assistance that I have. Carry medications in …. forgot to take meds by accident once … but I try not to purse because most of the time I try to put it in my purse and carry it around with me, so I know where it’s at, especially important medication … Completing required That was a big day because I had spent a lot of time with Ms. B, paperwork for free because one of the medicines that I needed they sent back the medication paperwork and we had to start all over. So after I finished seeing Dr. B, I went to Ms. B and then I gave her my paperwork … Cutting pills in half Dr. B had said that if, because of the A1C, that if I wanted to try to cut down on the medication … she gave me 850 milligrams of Metformin, so I cut those in half and I tried with just the half, and it would be maybe 130, 140, in that range when I’d get up. Deciding not to take Because it started, like when I get up in the morning and I test, medications (before it’s anywhere like from 95 to 100, and it started to go higher. telling doctor) After I got on that medication it started to go like 120 or

245 Strategies Illustrative Quotations something when I get up, and sometimes even higher, and I just cut it out. You know just I kept the meds here. I said ‘Well I’m going to stay off of them for about a couple of weeks and see,’ and it dropped back down to where it was, and I just quit and I told her that I didn’t take them, and so she took it away from my list of meds. Experimenting, learning She said ‘You did what?’ I said, ‘I took myself off of Lipitor.’ I by trial and error said, ‘I’m trying to find out something.’ I said, ‘I’ll let you know.’ So I had to wait ‘til the fourth month when it was out of my system before I can know if it was the cause of my joint pains and stuff. I haven’t been hurting since I’ve been off of it. Keep medication in … I leave them [medications] in the original containers. If you original containers put it in something else you may lose it, but if you leave it in the original containers [you remember]. Routinizing, normalizing And that’s just a habit. I just take it every morning and it’s taking medications normally, because Dr. B stated to me that it should be 100 or less when I wake up in the morning, and it’s usually 90, 83, sometimes 73. Scheduling medication Yeah. So like we’re in Revival, and if I want to go to church, around daily life when I leave here I’m going to take medicine before I leave here. I’m going to go straight home. I didn’t really have a good meal, so I’ll probably warm up a little slice of meatloaf, put it on a piece of bread and eat it and lay down. Take medication when I Like I was saying … the only time I take it is when I start feeling “feel funny” miserable. You know if my sugar’s too high, going up, I’ll start feeling funny and I’ll say ‘Oh I’d better take my sugar pill.’ Using a pill box I have the medicine, the little case, and so I just go in it every day and just take my pills out. All the pills are in there … all of what I take are in those containers.

Other barriers to health and diabetes self-management

Chronic and acute comorbidities

In addition to those discussed above, study participants faced three additional significant barriers in their efforts to manage their health, particularly diabetes: a host of comorbidities, psychological barriers, and, at any one particular point in time, concerns about acute health problems (sexual health issues, general “aches and pains,” infections, gout, et al.). Comorbidities included those often associated with diabetes:

246 being overweight (a variable intimately involved with the onset, management, and treatment of diabetes); high blood pressure; high cholesterol; and eye, foot, kidney, and vascular complications from diabetes. Other comorbidities included cancer, heart disease, stroke, depression, COPD, back problems, arthritis, sleep difficulties, and respiratory conditions caused by allergies. Patients’ comments suggested they sometimes found it difficult managing multiple health problems and coordinating the various medications they were taking for each.

She put me on meds once, but I mean it may not have been, but I told her I thought that it interfered with the meds for diabetes and I had stopped taking it, and I told her that I stopped …

Physician: Well there’s a couple of things. You’re already taking Wellbutrin, right? Patient: Yeah. I’m not sure if it’s really taking the edge off, to tell you the truth, but I take so much medication and there are so many side effects: fatigue, tremors, oh just because I take ten pills a day …

Two respondents suffered continuing complications from traumatic injuries; one had work-related back issues and the second was injured in a mishap at home. An observation from one of these patients is particularly illustrative of the cascading negative health effects of a traumatic injury on a patient’s experience of diabetes:

I had it [diabetes]at the time when I had the accident. That was under control because that was one of the pills she had canceled out, but when I had the accident, everything went off the chart: blood glucose, blood pressure, congestive heart failure kicked in again and everything, the heart, lungs, everything just went haywire.

In one visit, the physician, knowing the health history of a patient whom she had not seen for over a year, asked him early on in the appointment, successively: “So how much do you drink a week now?” and “how about drugs? … marijuana? cocaine?” Then acknowledging his continuing smoking habit, she counseled, “… and then for cigarettes

247 they have this Quit Line, you call this line and they’ll help you quit smoking.” This patient

had liver problems as a result of his drinking history.

Another respondent’s office visit – she had been recently married - was

consumed with discussions about her plans to have a family, birth control, and

additional health steps required of her if she were to proceed with a pregnancy. A

pregnancy would be high-risk: The patient was 44 years old and had diabetes. When the

physician learned of this development during the visit, she shifted her attention to co-

ordination of care issues, suggesting to the patient those specialists she should consult

regarding her planned pregnancy and medication changes that should be made. An

excerpt from her visit is included here to highlight the complexity a “typical” diabetes

appointment can present:

Because if you want this pregnancy, we need to do things a little bit differently. We need to get your sugar under perfect control. You need to see a high-risk doctor even before you decide to conceive. It’s hard to keep a pregnancy if your sugar is not perfect, okay, and there’s more chance of birth defects if you don’t do it right, all right? So you should be on a prenatal vitamin before you even conceive. I mean if you’re kind of going, ‘Well let’s just wait and see what happens’ and your 44 and you’re already at risk for birth defects and other problems, that’s not a good plan … so if you want to get pregnant, we need you to see the Ob-Gyn doctor. If you don’t want to get pregnant, we need to pick a birth control method, and I don’t think not doing one of those two things is really a good plan.

Weight was a major theme during both the visits and the interviews. Weight issues were discussed in 8 of the 15 office visits and in 13 of the personal interviews and were a source of distress to the participants. Many of them attributed their diabetes and other health problems to excess weight. They believed that if and when they lost weight they would be able to decrease or eliminate at least some of their medications;

248 and in several office visits the physician reassured them of this potential benefit of

weight loss. Others noted that they felt “miserable” and looked “horrible,” with one

woman lamenting, “… but I looked horrible to myself, just horrible.” At one visit the doctor congratulated a patient on her weight loss; and, showing her a chart of her

weight history, encouraged the patient to continue in her weight loss efforts. Weight

served as a motivator for the participants in three ways: The patients wanted to “look”

and “feel” better; they wanted to control their diabetes, at least decreasing or

eliminating the diabetes medications; and they wanted to “please” their doctor. Several

quotations vividly capture the extent to which weight and its attendant health issues

engaged the participant’s thoughts and behaviors:

After she sees you, she comes right back in the room with charts and everything you need … and I think it’s awesome because the readouts tell you your weight [history] … because see I’m struggling with my weight. So I like the fact that she always gives me that chart because I keep it and I look at it and I know, and that motivates me, because I know if I look at it and it’s going back up again and I go there, she’s going to get on me, you know, and like and she’s only helping me. I’m 53, and but all this weight, I’ve never you know been a diabetic, but it’s the weight that caused me to be a diabetic. So she’s just trying to help me, but you know sometimes I’m just hardheaded.

Well I lost like 50 or 60 pounds, and once I lost that weight, my sugar was stabilized, so Dr. B felt that I didn’t need to take it anymore and so far I’m maintaining.

I was truly miserable and I looked at pictures of myself and I said ‘No,’ because I thought I looked really attractive in my clothes and when I lost weight and I saw the difference, I said I looked horrible.

I have gained weight and I can feel it … high blood pressure runs in the family, but I know with my age and the weight [are the reasons]

Physician: Well, if you lose weight, you might not need as much medication.

249 One respondent spent much of the interview discussing her weight problems

and history and their relationship to her control of diabetes. She was so “obsessed” with

and “miserable” about her weight that at one point she “starved” herself, resulting in a

visit to the hospital for kidney failure and dehydration because she “was so conscious of

getting fat again, and I was just so obsessed.” “What were you thinking?” her physician

asked at a later point.

Several years ago I was hospitalized for dehydration because I was so conscious of getting fat again I was just obsessed. I was not hardly drinking water. I had, my kidney was dry, and this was in the last several years I was hospitalized at a hospital in [city] … because I didn’t want to wear a 22 anymore, a 24, 26, and it just, it was a mind thing. I’d go in a store and I would see the 24 and I would just 24, 26, I would just get an aversion. Just I’d say ‘Oh. Oh I don’t ever want to, you know because I was down to a 16 and I said you know I liked the way I was looking, so I literally starved myself, which Dr. B was, she said ‘What were you thinking?’ and I said ‘I don’t know.’ I was just obsessed. I didn’t want to be real, real heavy again. I just didn’t, and I still watch myself to this day in the mirror. I don’t have the mentality of an anorexic, but still it’s that mentality because I said I just refuse. I will not wear a 24 or 26 ever again.

Pain was often a subject of discussion during the visits and the interviews and

was mentioned 120 times. Perhaps more significantly, pain was discussed in 13 of the 15 office visits. In some cases, pain was chronic and in others attributable to an acute

condition. Discussions revolved around diagnosis, medication, side effects, patient

education, and co-ordination of care issues (e.g., one patient had been prescribed pain medication by a pain and rehabilitation doctor).

Physician: You’re taking the Lyrica for what kind of pain? Patient: For, what is it, arthritis? I don’t know. I have so many issues, but that was prescribed by the Pain and Rehab doctors. Physician: Is that at [Clinic] or somewhere else? Patient: At [Clinic]. Physician: Okay, so I don’t have that on your list. What’s your dose? … And do they have you on pain medication, too? … Do you know what the doctor’s name is?

250 … I have pain right here …I hope I don’t have another infection. I mean I don’t feel like I do.

I don’t know what’s going on with me. I’ve been having serious pains where I actually had to get a cane to walk.

Physician: Yeah, but usually having a head cold doesn’t give you joint pain though …

Physician: Well I mean we might want to just x-ray one joint just to get an idea of if there’s any arthritis in it that’s causing you pain, just to get a look at you know. Patient: Yes, and you know that was another thing. After I stopped taking that blood pressure pill, the back pain and the stomach pain went away. Physician: Interesting, okay. I mean anything’s possible with any medication, so if that medicine just doesn’t seem to be agreeing with you for whatever reason, you know we’ll change it …

I need you to look at this. I don’t know. They hurt. They hurt bad at times, and then this right here, and I have, see spots in front of them. I have headaches bad to right back here.

Depression appeared to be a dominant health issue for one respondent. During both the office visit and the interview she spoke at length about her struggles with feeling “lethargic,” having no energy, and being “lazy.” She related that negative feelings interfered, to some extent, not only with her own emotional well-being but also with family and friend relationships. Both patient and doctor first discussed medication solutions to depression (what the patient had taken in the past, efficacy, dosage, new medications to try, non- formulary issues, et al.). They then proceeded to talk at length about possible sources of her malaise and specific behavioral changes that could help alleviate her depression: pursuing volunteer opportunities, increasing general activity levels, seeking fellowship at church, moving to a different apartment, moving to a different city, and going out with friends. The physician spent a considerable amount of time during the visit “educating” the patient about various community resources and

251 their locations – libraries, recreational opportunities, senior activity centers. At one

point the physician asked, “So do you think you are depressed?” to which the patient

answered, “Yep.” Before moving on to ask the patient about her sugar numbers, the

doctor offered encouraging words and acknowledged the difficulty of dealing with

depression: “Well, I know it is a problem … I would love for you to just get active and

start motivating yourself … but part of the problem with depression is a lack of

motivation …” The patient, in reply, answered, “It’s a terrible, terrible disease. It really is.”

Yeah, just I have no energy. I’m not sure if it’s because I’ve retired. I have a lot of time on my hands and I’ve just become so lazy … Oh I have a good idea you know what’s causing a lot of these maladies. It’s because I don’t have enough activities … I was very distraught when [my grandson] moved … I don’t have the patience, the energy [to babysit my grandchildren] … So that’s part of my problem. And I have friends that really care about me. They call and they’ve said ‘Let’s go someplace,’ and I say ‘Oh I’ll call and let you know’ …

Psychological and other barriers

Psychological and personality characteristics played a significant role in the

patients’ attitudes toward, management, understanding, and acceptance of diabetes –

for good and/or for ill. The primary psychological/emotional barriers (including beliefs)

included fears, stress, procrastination, occasional forgetfulness, lack of will-power,

denial, being “lazy” (mentioned by only one respondent), the frustration associated with

the struggle of managing multiple complex health issues, and the conundrum of “doing

everything right” and not “getting very far.” It should be emphasized again that the participants in the sample, for the most part, believed they were in control of their diabetes, and the medical record demonstrated this to be so. Consequently, they

252 succeeded in this endeavor in spite of what were often only occasionally operative

negative psychological factors. Those are discussed below. A later section summarizes

psychological characteristics serving as motivating and facilitating factors.

A line of thinking came up noticeably in several conversations, and it is

problematic both “naming” it and designating it as either a “barrier” or as a “facilitator.”

Respondents displayed at times what might be termed a “healthy” savvy (or perhaps

suspicion or cynicism?), a questioning of things they heard, things they were told and

things they “should” do. One respondent in particular made several comments

suggesting that he distrusted the healthcare system: He asked the doctor if her

suggested treatment were an “experiment,” he questioned the “professionalism” of a

nurse drawing blood, and he expressed wariness of his sharing intimate health issues

when the doctor was recording his comments “in the computer.”

A few questioned the wisdom of some diet suggestions they had heard such as

using Splenda as a substitute for sugar (“makes my sugar go up”). The respondents

applied critical thinking skills – be they correct or misguided - in deciding upon the

benefit of following suggestions and advice about health management. One exception

to this tendency – which will be discussed in detail below – was their relationship with their physician. Even then, evidence suggests that when they did disagree with the advice of the doctor, they engaged in a partnership with the physician to negotiate a course of action agreeable to both. A few cynically commented about the “real” force driving the healthcare system (insurance companies), the laziness and incompetence of

253 healthcare employees whom they supervised, the untested (to them) consequences of taking the H1N1 (“swine flu”), and doctors “who know the cure for diabetes.”

Suspicion, cynicism, wariness – or savvy critical thinking? But you know one thing I found? People are rushing to get all this salt less stuff and no this and no that, and you know what? He gon’ tell me to have Splenda. I don’t mess with it. That stuff run my sugar up like whew!

Yeah, because back years ago I started at [facility] and our patients stayed for like a year after strokes or whatever. Then insurances said ‘You need to be back on your feet in three weeks after surgeries, whatever, and if you’re not, then you have to go, nursing home wherever. I don’t care where you go, but you need to leave here.’ Okay, and then they started putting more on the LPNs, more on the Aides, and then I saw where nurses had more time to sit back, not to chart, but have that second cup of coffee and talk about what you did over the weekend.

Participant: … I think they’re coming out with these new pills now that control or monitor your diabetes. They’re bringing out these pills now. Interviewer: The new ones you’re taking now you’re meaning. Participant: Right, and then I know another thing. I know there’s a cure for this disease. Interviewer: There is a cure, you’re saying? Like how do you mean, the pills or…? Participant: Turn straight to a vegetarian, you’ll get rid of all this. Interviewer: You think? Participant: Yeah. I know a lot of people that did it. Interviewer: That stopped eating meat and they didn’t have diabetes anymore? Participant: Not eating meat and, right, they ain’t have no diabetes no more. They lost weight, they stayed in shape, and see that’s a mind thing that’s hard to do, but there’s a cure. Then these doctors know there’s a cure, but if they tell you there’s a cure, then they’ll be losing a part of their jobs.

Physician: The only way you can tell is if you try some of these things, or Glipizide, that’s another one you can try. Patient: Okay. Well whatever you think is best for me. Physician: Yeah. I mean I’d like to see if we can get you on one of these pills to see if they work, you know? Patient: They ain’t no experiments or nothing like that, right? Physician: No. This is what all the diabetics take. Patient: Oh, okay, I was wondering.

Nurse: I’m just going to draw some blood … Patient: Are you a professional at what you’re doing? Nurse: Yes. Patient: Because I don’t like to keep getting stuck with that. Nurse: Oh, no, no. I’m good. Patient: The last time a vampire hit me. She kept coming. … Nurse: All right, let’s take a look at your arm. I’m going to push this in just because it’s easier for me to… Okay, and a fist. Okay, keep it tight … let me just feel your other arm. Okay, back in a fist. Hmm, I guess we’re going sideways. Okay. Okay, tight fist again for me. Just relax it. A little

254 pinch … you doing okay? Patient: Um hmm. Nurse: Was that professional enough? Patient: Of course. Nurse: Okay

I might come in here one day and say something, might make a joke out of it and she gon’ put it all in the computer. And like we were over there that day, you know, and she said ‘How much you had to drink?’ She started saying, ‘A fifth? A quart?’ I said ‘Where you get that information from?’ you know, and she laughed. So but she put that all in the computer … I don’t really care for that because I mean I might say something to her just as being joking or something and she take that serious and put that in there, and I might not like that … in the computer, that’s good, but you’ve got to watch what you say.

I don’t do flu shots. I do a pneumonia shot. Not taking the H1N1. Too many side effects that they don’t know about. It’s too new. They say these people [Clinic employees] are supposed to get it and they’re giving it to [patients], and then they say there are side effects, ‘But we’re really not going to tell you all of them’ …

Denial Yeah, I was eating. Then I thought, ‘You’d better do something.’ When I went back it [blood sugar] must’ve went up some more. That’s when I, the bell went off, ‘You’ve got to do something about that. You cannot do that.’ And then after that she had put me on the pills, but when I came back when I was taking it, I think I must’ve stopped doing everything because it really, it registered. It really registered in my mind, ‘Well you know you’re a diabetic. You’ve got to do better.’

Well okay. I’m comfortable with it now, but when I was first diagnosed, you know I was in denial. I couldn’t believe it because I was you know that myth that people with diabetes are really obese and stuff, and so it took it took a while to deal with it.

Information overload Well do you feel like doing anything to yourself?’ I said, ‘Are you crazy, Dr. B. No, I’m not fixing to kill myself. I love myself,’ but I guess when I looked up depression, that’s part of being depressed. People do do stuff like that. So I said, ‘No, I’m in a different kind of depression. I ain’t in that kind.’ You know because anything, I’m always looking up something, and she always say, ‘If you don’t stay off that computer,’ because sometimes I scare myself.

Fear I didn’t say anything because I thought it would go away. I think I was mostly scared. I didn’t know what was going on with me.

255 Even though I’m the biggest coward in the world, just scared to death, but I still continue to come and have those mammograms and everything, even though I don’t want to. I just, I do not want to because I don’t want to know the outcome. I do not like tests, but I still come.

Yeah, I was taking insulin. Yeah, I was taking injections. The injections, I was on, what you call them pills, Metformin. That’s a glucose pill, one of them big pills like this, and that pill, it would just, I couldn’t get along with it. I was just scared of it.

You need your mammograms, and I had never heard of a colonoscopy. I can’t even pronounce it. You know what I’m saying? I was like, ‘What?’ Then when she told me what they had to do, I said ‘Oh no. I’m not getting that,’ you know.

Lack of follow through/procrastination I can’t do that [follow a menu plan] … I can’t follow through with it, nor can I afford to eat a lot of those things.

… you know, but [the doctor] refers me and I just don’t follow up on it …

Oh it’s been two years now she’s been telling me to go to the doctor, because she said ‘Although your vision is better,’ she said, ‘, you still need to go by you being a diabetic.’ So I be thinking that, ‘Okay, well I came back from . My vision is good,’ you know, but I need to go …

… and if she says that I need to have something done, I kind of procrastinate. I remember one time I was supposed to go in for a test, nothing major, just I forgot what it was, but it was at [Clinic] …

Not being adequately informed Participant: And every time I did it, it wouldn’t read no number, so I thought something was wrong with the machine. Interviewer: Oh, okay. Participant: See that’s what I’m saying, uninformed, not doing what I was supposed to do.

“Just being lazy …” Interviewer: What things help you? Like I know you’ve talked a lot about your goals, diet goals, exercise goals, etc. Anything make it more difficult for you to do those things? Are there things that hold you back? Participant: No.

256 Interviewer: How about costs or expenses or meds or anything? Participant: No, just lazy.

Frustration Right, got me thinking, too, you know, because she said, ‘, you do good, then you do bad. Then you do bad. Then you do good, then you do bad.’ She said, ‘You do bad more than you do good.’ She said, ‘Look at you.’ She showed me. She said, ‘You always say you keep…’ I said, ‘I do keep my chart.’ She said, ‘I look at them. You know I look at them, you know,’ and then I said, ‘I just get frustrated at times sometimes, you know.’

I think I know why. Because with the new kit, I have everything I need, but the frustration and aggravation at trying to get more supplies without, you know without having insurance …

Why am I still holding on to this weight? ‘Oh because the insulin makes you gain weight.’ I say ‘What the hell? Here I am running around here breaking my neck and the insulin makes me gain weight.’

Not knowing how to use health monitoring machines I invested in a machine, one of those machines ... I don’t know how to use it … I’ve got to figure out how to use it, and I meant to bring it here so you could show me …

Strategies for diabetes self-management – “not elsewhere classified”

The several sections immediately above described barriers to and strategies for

self-managing diabetes pertaining specifically to diet, exercise, glucose monitoring, and medication management. Presented in this section are other more general approaches the participants used to manage their health. There is some overlap with earlier

comments because the respondents described complex processes, beliefs, attitudes,

and behaviors; in their answers to questions, they considered their illnesses in the

context of their everyday lives. That is to say, the strategies participants applied to specifically diabetes management behaviors they applied in large part to other aspects of their health.

257 The participants’ self-management strategies included: “listening” and mindfully responding to bodily symptoms, feelings, processes, reactions; seeing the doctor regularly; listening to the doctor and heeding her/his advice; actively and proactively partnering, sharing in the decision-making process, and negotiating with the physician concerning all health matters; trusting the doctor’s judgment even when not completely convinced of the necessity of following a course of treatment; taking responsibility for their health and well-being; seeking information from a variety of sources (doctor, ancillary medical personnel, Clinic resources such as the Social Worker and the Financial

Counselor, family, friends, the Internet, on-line support groups, popular media, medication labels, et al.); thinking critically about the information they obtained; using available community resources as needed and desired; taking diabetes classes at the

Clinic and elsewhere as available ; setting goals and planning ahead; “experimenting,” learning by trial and error with regard to all aspects of diabetes management; allowing oneself “wiggle room,” “cutting oneself slack”; being honest with the doctor about behaviors, specifically sugar monitoring, diet, and medication adherence; using alternative medicine, supplements, and products; routinizing all facets of health management (e.g., eating, exercising, monitoring sugar, taking medications, making doctor’s appointments, getting yearly health screenings) ; tending to all required annual health screenings (e.g., cancer, inoculations, eye exams, et al.); depending on family and friends for support (extensively covered earlier); and advocating for themselves and feeling free to ask for assistance and advice on any subject. On a more mundane level, respondents also talked about keeping health and financial assistance files; informing

258 their children about their medications and health status; scheduling the next doctor’s appointment before they leave the Clinic; completing all paperwork required to obtain free medications and other financial assistance; keeping ongoing health records, information, “numbers” to share with the doctor at the next visit; and using an emergency room rather than seeing another doctor.

Listening to, knowing my body

One of the most prominent strategies the respondents used to self-manage diabetes and their health in general was to “listen” to their body, “know” their body, and apply that body sense in deciding the most appropriate courses of action to take.

This theme was consistently mentioned throughout the visits and the interviews. Some scholars have identified this phenomenon as “embodied knowledge,” with one offering the definition: “Somatic or embodied knowing is experiential knowledge that involves senses, perceptions, and mind-body action and reaction” (Matthews, 1998, p. 236).

Some argue that the dominant Western culture marginalizes and “distrusts” bodily knowing and privileges cognitive knowledge, thereby disenfranchising people of their power to resist the dominant culture in matters of their own bodies, their own health

(Kerka, 2002). Regardless of the status of this phenomenon in academia, the participants heartily related story after story, of the times and of the ways their

“listening” to their body led them to make the health decisions they made, including

“when to call the doctor.”

I know my body better than anybody else does. Do you understand what I’m saying?

259 … Yeah, I just take pills you know just once every other day. I mean my body; you know I feed off of what my body is telling me to do.

So I can tell when it’s [sugar] low, and that’s because I’m on a schedule in my routine. You know you get to know the thing. Then I know my body, too.

… well see, I learned that you know your body could tell… If you’re sick and you’re feeling really miserable or something like that, your body will show the reactions of it and you’ve got to go see a doctor or something, go see the doctor, but then when your body feel like it’s normal and you feel like you’re all right, you know ain’t no sense in abusing medication and ain’t no sense in you know keep going in to the doctor about the situation. You know what I’m saying.

Well right now I only check, test once a day, but now if I feel like there’s a problem, you know like if I feel like it’s too high or too low, I’ll test again. But I usually test as soon as I get up in the morning, and sometimes after I eat I’ll feel a little funny and I’ll go and I’ll check it then, but otherwise I just test once a day.

Really to me it’s just proof that I know what I’m talking about, that I know my body, because normally I only do it twice a day. I was on three, but Dr. B took me down to two, and that’s been a while. I can’t tell you how long. But then I just want to prove to me that I know what I’m talking about and I know my body, so I say, ‘Okay, I know it’s down. I know it’s about in the 70s. I know.’ I can tell when it’s in the 80s. I can tell when it’s in the 70s. I can tell when it dropped to the 90s. I can tell when it’s up. I can tell when it’s too high.

You know but the thing about it, you know, I was in a counseling for over 15 years, and so I know exactly what my coping skills are and my weaknesses.

“Experimenting,” learning by trial and error

A second prominent strategy was “experimenting” or using a trial and error approach to decide upon a course of action regarding all aspects of health and diabetes self-management. This strategy is related to that above in that by “knowing” and

“listening” to their bodies, the participants felt enabled to make “before” and “after” judgments about the wisdom and the efficacy of following a particular health behavior.

Is it time to take this pill? Should I stop using Splenda? Should l check my sugar? Using

260 their body knowledge, the respondents experimented, learning by trial and error, to decide what “worked for them,” in terms of perceived efficacy, safety, and side effects.

How does my body “feel” after I do this or if I don’t do this? Some of the respondents were meticulous in keeping records about their “trials”: They noted dates and “how they felt” before and after they changed a medication regimen. Usually the respondents did such “experiments” and made medication changes before going for an office visit.

However, as a rule, since they wanted to do “what the doctor says,” they always reviewed their actions and shared the “results” with the physician to be sure their they were appropriate. Most often, after negotiation, their physicians changed, eliminated, or modified the dosage of their medications.

After I got on that medication it started to go like 120 or something when I got up, and sometimes even higher, and I just cut it out. You know I just kept the meds here. I said ‘Well I’m going to stay off of them for about a couple of weeks and see,’ and it dropped back down to where it was and I just quit [taking the medication] …

And sometimes I get like a headache, you know, and I notice it, and like I write down a lot of things too and the time and whatever and then I say, ‘Okay, I’m going to see if this is going to happen again if I stop doing this, or if I do this,’ and that’s how I kind of find out. That’s how come when I go to the clinic I can actually tell [doctor] I don’t have to think back. I can tell [doctor], ‘Okay, this is I stopped doing this and this is what happened,’ and I’ll say, ‘Okay, we’ll I’m going to do this and see how this do with my body, you know,’ and so that’s how I know.

I said, ‘I took myself off of Lipitor.’ I said, ‘I’m trying to find out something.’ I said, ‘I’ll let you know.’ So I had to wait ‘til the fourth month when it was out of my system before I could know if it was the cause of my joint pains and stuff.

So what I did, I shot it [insulin] in my stomach and then I waited a while and I checked it and it went down. Then another time it went up, I did it in my arm and it took a while for it to go down. When you shoot it in your stomach, it goes through your system quicker, you know. Now I’m not a doctor, but for me, yeah. And I keep track of everything, so that’s how I know.

261

… ‘Do I really need to inject this stuff into my arm? How come I just can’t take the pills like I did before?’ You know so I tried that and it didn’t work, so I started injecting myself and then I started feeling better.

So it was like five stairs up and five stairs down, and I did it a couple of times and I got amazed! I didn’t know! I mean I felt like I had, but there’s nothing like confirmation.

Seeking information, becoming informed

A third prominent strategy was seeking information and knowledge about

diabetes and other health issues. This theme was common and interwoven throughout many discussions during the visits and the interviews; and as noted earlier, a significant part of each office visit consisted of the physicians’ educating patients about any one particular health issue under discussion, particularly with regard to medications.

Resources the respondents used to obtain health information ran the gamut from their physicians, families, and friends (their primarily used and most trusted information sources) to reading anatomy books for a college course and articles in “Harvard Medical

Journal” to watching the Biggest Loser on television. Other sources of information and learning included: diabetes classes at the Clinic; seeing the nutritionist; reading pamphlets and literature they received from the doctor, the Clinic, and from other healthcare professionals; using the Internet to research issues of interest; visiting online diabetes support groups, and reading labels for foods and medicines.

The influence of popular culture

Finally, the popular culture, the media, played a significant role in the respondents’ beliefs and knowledge about health and diabetes and influenced their subsequent behaviors with regard to health management. Peppered throughout the

262 discussions were references to television shows, advertising, celebrities, restaurants,

and other mass marketing media. The participants mentioned Mr. Hero, the Biggest

Loser, the Food Network, Jack Lalanne, Lipitor commercials, Patti Labelle, the Health

Channel, news accounts of the FDA’s pulling meat off grocery shelves, and television

news programming, all of which influenced their beliefs and behaviors. One respondent

spoke of seeing television advertising for colon cleansers and wondered aloud if such

products were effective and safe to use; another, if the Adkins drink were “fattening.”

Popular culture – what the participants read, heard on television news accounts or advertising - influenced both their health beliefs and their health behaviors.

Respondents also often spoke about fast food restaurants and noted that before they

were diagnosed, and if they were in a hurry, they would sometimes frequent them. One

participant admitted to being “so bad” eating at a fast food restaurant that the

employees there knew what she would order (“… because it was so bad eating that fast

food, the people in the drive through knew me. I said that’s embarrassing. They knew

what I wanted to order. They knew everything. I said ‘This is so

embarrassing.’). Another respondent, as shown below, believed Subway sandwiches to be good for her, because “they were good for Jared.” Fast food restaurants are ubiquitous in our culture, and advertising for them runs into the billions of dollars yearly. According to a report sponsored by The Robert Woods Johnson Foundation, “a total of $4.6 billion was spent on all advertising by fast food restaurants in 2012”

(http://www.rwjf.org/en/library/research/2013/11/fast-food-facts-2013.html). Other

researchers have reported that fast food companies aggressively target advertising to

263 children living in middle-income neighborhoods, rural communities, and majority Black neighborhoods (Ohri-Vachaspati, et al., 2015)

… and plus I watch the “Doctors” all the time, medical histories and all that stuff.

… and like when I go to Subway, I ate at Subway for a whole month. For a whole month for lunch and for dinner, and I lost the weight. I started losing the weight, but I didn’t use the mayo. Physician: What did you eat there? Well I ate the same thing that guy Jared ate.

I would say that I’m trying to do what I can do, but a lot of time like it be on TV like ‘You need to check your blood sugar every day. You need to do this every day,’ and to me I was like I listen, but it’s everybody, because they’re a diabetic, ain’t on the same level.

But meters, can I get…? Do they have the meters you can just do it on your arm or something? I see it on television all the time advertising it.

Yeah, because I recently heard on the news that the pharmacies can change your medication without telling you.

I couldn’t understand what was happening to me, so one time I was laying down watching TV and here goes this Lipitor commercial, and they had talked about the side effects. I sat up in the bed. I said, ‘Oh Lord, that’s me. Lipitor.’ I got up to the cabinet. I said ‘This is what I’m taking,’ so I said, ‘Okay, I’m not going to take it …’

…. and then Patti Labelle [talked] about how she just changed herself and what she was saying how she ate. By her being a singer, she eats fast food, and some of the stuff that I didn’t realize that was hurting me was hurting me, you know, and then also like I researched and it said everything that says low cal or whatever, low this, is not always really low cal … you have to learn how to read the ingredients …

The Biggest Loser says if you want something, Bob says if you want a piece of cheesecake, eat a piece of cheesecake. Don’t eat the whole cheesecake like you been doing, but eat you a little slice. Don’t deprive yourself. When you deprive yourself of something that you want, that’s when you binge. So I don’t deprive myself. So like I wanted a Pepsi, so I bought a can and drank it …

264 Yeah, I saw the commercial that was saying that you get it from your Uncle Charlie or your Aunt Nancy or whatever, you know. It’s like hereditary, you know. So I said ‘Okay,’ because you know a lot of family members have it.

Having no diabetes is no fun. I was reading an article in Harvard Medical Journal just the other day, because I read a lot, and they were talking about the psychological affects that diabetes has on the people that have it.

And but the breast thing, I seen a thing on TV and I said it looks like that thing hurt mashing your breasts all down … You know what I’m saying, because I watched that Health Channel. I’m like ‘I ain’t about to go up there,’ you know.

… they had it on TV one time that they were pulling beef up off the … the FDA was pulling beef up off the store shelves…

And then I be watching all these commercials that come on TV that’s trying to sell … I said I’m not buying nothing else. All these people coming on, and the biggest thing is like this colon cleanser. I started thinking, ‘Is that right? Am I supposed to be doing that …? I’m not doing that … is there a such thing?

Yeah, that’s what my husband was telling me, that they had announced it on TV, and he said something came in the paper, you know in his leaflets about it. I’ve got to find it. I’ll find it. Stuff done start coming in for me, so I’ll see for sure. Silver Sneakers

The Table 18 below illustrates various additional strategies participants applied to manage their diabetes and general health.

Table 18. Illustrations of health self-management strategies

Strategy Illustrative Quotation Allowing ones-self “wiggle Because I know I eat junk sometimes. You know you have a room” taste for… I like candy sometimes. I don’t overdo it. Being assertive and …when I needed to talk to [doctor] and I couldn’t reach her advocating for self …. I left information, told the nurse to have her call me … like I told [nurse], if you set up an appointment and I have to wait a month or maybe two, three weeks …. if something happens, I’m going straight to the hospital. Being honest with the doctor … usually I’m pretty good and I’m honest with her. I let her know what I’m doing … yeah, because I’m honest. I’m not going to hold anything back, you know. Being sure to get annual screenings

265 Strategy Illustrative Quotation Checking feet regularly I mean yeah, you know, because I’m always looking at them. They say you’re supposed to look at them with a mirror and everything. I merely just rub on them at night and make sure they’re still there. This neuropathy is a drag. Consulting the Clinic a lot of times when I go and talk to the Nutritionist over nutritionist there, she would say ‘Well you’re doing good. What did you eat?’ and a lot of times I’d write down, I’d try to draw that plate she have Consulting the Clinic social I even had to see the Social Worker a couple of times, and worker we’re almost like friends. I don’t see her that much anymore, but she was very helpful, and you know whenever I needed to speak with her or anything, I just let them know and it was never a problem. Depending on family My daughter works in a lab and checks my sugar for me.

Depending on friends And then a friend of mine, she told me about rating and everything over here at [Clinic], which I did not even know about, and that’s when I came and got rated and that’s when I started this course with Dr. M … Finding alternative, Well I used to walk, but I don’t walk out here because it’s substituting dangerous … I used to go to a park in the summertime, but now I think I’m going to have to find something like inside a rec center or something like that to walk. Follow directions See, and it’s very important. I’m learning ‘Follow directions,’ because you know I’m like ‘I can’t afford this. I’m only going to take this, you know, once or twice,’ but then you read the pamphlet and I’m like ‘Okay,’ and so then my next visit I tell them you know blah da da, so he titrated me down so that now I only take that Lyrica twice a day. Going to diabetes classes I went to them [diabetes classes] for like a month and a half, maybe six weeks. Then I took up another class somewhere else, and now I’m getting ready to go to [hospital] to the diabetes class. You know it’s new stuff coming out. Going to ER for health Yeah, I used to get really, really sick. I would have to go to care/couldn’t afford doctor Emergency maybe once a month. Informing children of And my children, they know where everything is, just in medical/health status case anything happens or they come in here, because I live alone. Keeping detailed health So you can see, this [folder] is my healthcare … anything records current and accessible that requires following up …. this is my office … I started it for my Mother, keeping all her things together … every doctor appointment, every business [issue] …

266 Strategy Illustrative Quotation Keeping the doctor informed Well I try to keep my doctors informed of different things about my health, what I am that’s wrong with me. I ask questions. They ask me doing questions. I answer. They answer. Listening to doctor - following Well because Dr. B asked me. You know she said ‘I think it’s her/his advice wise. Take your blood pressure.’ Planning ahead and being I mean I may be off sometimes, like if I’m out with my sister prepared shopping and stuff, but I always take me a survival kit with me, you know, and that’s my insulin, my needle and you know whatever I need. So I don’t know how long I’ll be, and I’ll stop what I’m doing and go in the bathroom somewhere and do my shot. Now and my survival kit consists of a snack, something. Purchasing beneficial health- But you know what I want to invest in? One of those bands, related products you know one of those [diabetes medical alert ID bracelets] … Reading medication labels … I must have read the information that came with my Lyrica once and it said that one of the side effects was it can make you dizzy or off balance… Recognizing but not dwelling I don’t worry a whole lot about it, because I know I take my on diabetes and other health meds and I keep all my appointments with the doctor, so issues you know I feel okay about it. You know I know anything can go wrong, but you know I do what I can. Routinizing health For me it’s like part of getting dressed. Okay, that’s part of management tasks something that I’m putting on, because I know I have to get that shot and I’m on a schedule, you know, and I try to stick to the schedule … Seeing the doctor regularly I think it’s important that I keep all of my appointments. I don’t miss. I don’t miss at all. I keep them all and I do what she says to the best of, you know, to my… I try to do everything she says to do … Seeking information You know different information would come in, pamphlets and booklets and things, and I would read whatever I could get my hands on. Seeking outlets to manage I’m biking … and then the automotive work … it keeps me stress and enhance well- strong doing that, working on this and that … being - volunteering, hobbies, social activities Setting goals I started setting myself some goals and I start working towards them, and that’s the way it’s worked with everything else, to get off of, because no matter what anybody says to you, the only way that you could do it is you have to work at it … Taking responsibility for one’s Because it’s not just the doctor’s responsibility. I’m health responsible for my own health as well, you know, and if she takes the time out of her day to, you know to take care of

267 Strategy Illustrative Quotation me and try to keep me healthy, I’m going to do what she asks me to do. So that’s that. Using alternative medicine So it does work. That’s another old school remedy from approaches back in the day before they came out with all the blood pressure medicines and stuff, and I had told [doctor] you know I’d been doing the vinegar and honey. Using community resources … and we’re on this rate thing, but you still need the money, and I’m low income … I need [medical] work but, but I can’t afford it so I’ve been going to the Free Clinic … I have to do what I have to do. Using the computer to design I made me up a thing on the computer, like a spreadsheet health-related management or whatever… aids

Mr. Hero and Jared’s Diet

One particularly colorful example of the influence of popular culture on health

behaviors concerned a patient who, in great detail, described to the physician about

how, with aforethought, she decided to eat at Mr. Hero’s and follow “Jaret’s diet,” an

advertisement of which she had seen on television with the expectation that she, like

Jared, would lose weight. This disclosure, of which the patient appeared to be proud,

catalyzed a lengthy discussion in which the doctor used the respondent’s “story” to

discuss specific diet issues relevant to diabetes management, to educate, and to further

enhance the positive, trusting relationship she had with this patient. Through careful and thoughtful listening, the physician communicated to the patient that she cared and that she respected the patient’s lived experiences. Her concluding comment to the patient, offered with some humor, acknowledged, “well, at least you walked to Mr.

Hero.”

268

Table 19. Excerpt - culture and diet – fast food

Patient Physician Well then you know I’ve been watching that Right. Right, right. “Biggest Loser,” but it ended already, and I said ‘If these people can get on this show.’ I know they’ve got people working with them every… I mean they’re on that regimen for six weeks I think. For three months or something, but I can do Good for you. it, because they say the people that go home, that get sent home, they go home and they do it. So I’m doing… I made me up a thing on the computer, like a spreadsheet or whatever… …and I’m doing what they said. And like What did you eat there? when I go to Subway, I ate at Subway for a whole month. For a whole month for lunch and for dinner, and I lost the weight. I started losing the weight, but I didn’t use the mayo. Well I ate the same thing that guy Jared ate. Yeah, but Jared’s a big six-foot tall guy who walked to Subway twice a day. Well I walked up here. Yeah, and that’s good. That probably had more to do... Were you eating like a six-inch with both pieces of bread? Well I bought the foot long, but I ate half of it Um hmm. for lunch… …and then the other half for dinner for a Um hmm, and which sandwich was it? whole month … I was getting that chicken that he was Okay. getting. Then I would get the turkey breast and It’s fine, isn’t it? sometimes the ham, and I would just get every vegetable they had in there, even spinach on there, and I didn’t get no mayo, oil and vinegar, and I never had put oil and vinegar on a sandwich before and it tastes pretty good. And the little pepper. No salt, but the Um hmm. pepper. And hey, I told them I could be their That’s wonderful. spokesperson because I lost weight.

269 Patient Physician The lady that she said… You know I usually tell women that they can’t lose weight on Subway, just because it’s still too many calories for us. Okay for men, you know those sandwiches, it’s a lot of bread, but you did it right. You took the mayonnaise off … and you’re walking to Subway to get the sandwich.

Motivators/Facilitators of Diabetes Self-Management

The discussions in the sections above review the primary factors influencing the

participants’ abilities - more importantly, “chances” - to manage their diabetes: family,

economic status, employment and health insurance status, the Clinic’s sliding-fee scale,

and public policy initiatives (Medicare, Medicaid, VA). In some cases, those factors presented primarily barriers (e.g., economic status, job stress, lack of health insurance) and in other cases, facilitators (e.g., family) of diabetes self-management. Some factors worked for both the “good” and, and to some extent, “the ill,” of the participants’ ability to practice healthy lifestyles, i.e., the Clinic’s sliding fee scale and public policy financial initiatives (Medicaid, Medicare, federally funded health clinics). Public policy programs were helpful, but only to a point. The Clinic’s sliding-fee scale options were helpful, but

only to a point. With the exception of mourning deaths, attending to caregiving

responsibilities (albeit freely and lovingly given), and worrying about the health of family

members, family was perhaps the pivotal positive influence on the participants’ self-

management success – that, along with their own psychological temperaments. The several paragraphs below discuss additional factors motivating and/or facilitating a patient’s self-management of diabetes. Some are external to the patient (e.g. the

270 doctor, the Clinic, the healthcare system of which the Clinic is a part); some, internal

(psychological temperament, comorbidities, fears, knowledge, illness experiences, beliefs, attitudes, life stage, spirituality, length of time since diagnosed).

The physician

It is impossible to overstate the role of the physician as both a facilitating and a motivating (cheering them on) factor in the patients’ overall success in managing their diabetes. From the patients’ vantage point, their doctors were indispensable, perhaps heroes. The participants expressed “love,” caring, trust, admiration, respect, for them; they compared them to other doctors they had had over the years, to the detriment of the latter. The only negative comment remotely associated with a doctor was that she or he was, at times, difficult to see on a timely basis; but that was a function of Clinic policies and procedures and not within the doctor’s purview. Anything and everything the doctor did, in some cases whether the patient realized it or not, facilitated the treatment of diabetes and the patients’ self-management behaviors to that end. For the respondents, there was nothing “not to like about their doctor.” Each spoke of her/his physician in glowing terms from the beginning through the end of each interview. They liked and appreciated, some used the term “loved,” that their doctor listens to, empathizes with, compliments, encourages, understands, and validates them not only as a patient, but as a “whole person,” recognizing, through their questions and comments, that the patient has a life, a family, a history, and most significantly, is saddled with economic constraints.

I love her to pieces. I’m like ‘Why didn’t I have her before?’ Not that the other doctor was bad or anything, but I really feel that [doctor] cares. When she

271 comes into the room, it’s all about me, and she lets me babble and she laughs at me, but she doesn’t let me get away with [anything]…

Like [doctor] is awesome at it because she has, she’s a wonderful, she’s just a very I guess organized… I don’t know how to describe it except that I love how she does what she does.

Love her.

I think your doctor should be your closest friend.

You know I mean I don’t want to seem too gushy, but it’s just I’m just being honest in that she is just a wonderful physician and she’s just an asset. I think she’s an asset. That’s all I can say.

I decided to relocate, but I’m going to… I’m still going to keep my doctors … unless I’m paralyzed or something, because I can’t change, give up, my doctor …. make a change like that.

… all I’m telling you, man, when I had health insurance and stuff I was going to another doctor, a family doctor and man I feel really fortunate and blessed that I ran into a doctor like [doctor], because she took really good care of me, and very frank and very to the point. We had discussions about this, that and the other, and I’m 100% better … since I’ve been coming here to her, I’m 100% better …

So she’s very blessed in that. She has a gift for being a good doctor.

If I get sick, I’ll go to Emergency. I do not want to see another doctor … I said ‘I’m not going to a doctor until you return.’

There was but one exception to the praises heaped upon the Clinic doctors. This exception, however, involved only one respondent’s experience with a doctor whom she had seen several years earlier at the Clinic and who was no longer employed there.

This “exceptional” excerpt is included here because it provides a vivid juxtaposition between a “good” and a “not so good” doctor from the vantage point of the patient.

I think I’m pretty open with her [present Clinic doctor], and I know that if I had any questions, I could ask her and she would explain it to me. I’ve only had, this goes back to the treatment that you receive. I had an incident here that I have to bring up. I had an incident here maybe, it may have been three or four years

272 ago, but there was a physician, who will remain nameless, and I was so uncomfortable with this physician that I wouldn’t even allow her to treat me. This doctor had the coldest aura that I have ever felt with a physician before. The minute she came into the room, it was the attitude was like ‘Okay, what’s the problem? I don’t give a damn.’ I never have forgotten that. I’ve never forgotten that and I said ‘I don’t want to be treated today,’ and I didn’t say anything to anyone. I just left, and I hope that that doesn’t happen to me again. This was a physician I felt just did not give a damn, just was going through the motions.

The respondents characterized their doctors as no-nonsense; honest; forthright;

caring; taking time for them, even when busy; professional; trusting; well-spoken; an

asset; a wonderful physician; superior to other doctors they have had; treating them

professionally and with concern even though they are low income and “rated”; and

respectful, among other accolades. The following quotations illustrate the several ways

the study participants appreciated and valued their doctor at the Clinic. This paper

argues that these factors comprise an amalgam of physician practices and approaches

that constitute powerful motivators for the respondents to practice a healthy lifestyle.

Morever, the quotes below also illustrate how the physicians facilitated those healthy behaviors as well.

Doctor “better,” “more caring,” more thorough than others I’ve had I’ve had docs before. I was just their patient, and you couldn’t just really sit down… Like some of the stuff that I discuss with [doctor], you try to talk to them, ‘Oh I’ve got other patients that got…’ You know I know they’re on a timeframe, but they care. She cares, you know, and she’ll talk to you, or she’ll give you a call at home. She’ll call me at home.

Yeah. Yeah, she’s… You know a lot of doctors, because they’re doctors, they have an attitude, ‘I’ve gone to school. I’ve done this. I’ve done that, and what do you mean asking me this, or how do you feel that I don’t know what I’m talking about?’ but she’s easy to talk to, and she, if there’s… It’s never been a time that I’ve asked her anything and she didn’t know what to say or what to do.

273 No. Um umm. No. She’s ‘What could I do for you?’ When I first came, she gave me a complete physical. I didn’t even have to ask for it. She just started doing it. I was here, and I liked that. I really did. A lot of them don’t do that. They don’t care. They get you in, they ask about money, so that’s all.

Respects me and my time I mean you go in there, you don’t be sitting long, you know. When they put you in a room, the next thing you know, [doctor] is knocking on the door to come in. You know it’s not long at all. And then if she does be a little bit, she always comes in and apologize you know for being you know coming in a little late, but I’m like, ‘I didn’t know you were late.’

Physician: … what I’m worried about is you’re going to come all the way here to your appointment and you’re going to find out he doesn’t know anything of what’s going on and you’re going to have to come back …

Can talk with the doctor about anything I tell Dr. B everything, you know, I mean to the point when I first got the guy back in my life, I went in the office, I said, ‘Well…’ She said, ‘Well how are you today?’ I said, ‘Well I’m sexually active.’ First thing come out my mouth, you know because I mean she’s just that type of doctor that you could talk to. You know what I’m saying?

Yeah, because I’ve had some personal problems I was able to share with her and she, you know she was very supportive in that too.

I like that he’s well spoken. You can talk to him about any and everything.

[doctor], she’s my doctor and I’m very pleased with her service. I can talk with her about a lot of things …

Oh yeah, everything. If anything was to happen, I would call her and tell her. I would get an appointment and tell her, you know. Yeah, I feel very comfortable with her.

I’m just getting kind of comfortable with her, because I haven’t had… I think I may have been starting, it may have been in 2007, and I’m just getting really comfortable enough you know to share some things with her, but she’s a good listener and you know she offers advice, you know, what things I might want to do. So I’m very comfortable with her.

274 Professionalism And she handles things so very professionally, and you have all walks of life coming in there, because you’ve got some people that are mental. They have mental issues, and she handles everybody.

Helps me get financial assistance Doctor R. I think her name was R. Yeah, I was seeing her, and so she left and went to a different organization, and they asked me who I wanted and I didn’t know anybody else, but then it came in time I think I needed to see somebody and they gave me an appointment with [doctor]. And I had heard her name and the social worker said that she was really good, you know that her patients like her and she’s really, she didn’t have a hard time getting what she needs from her to help the patients, so that’s what I really need, because I have a lot going on, and it helps me when my caregivers kind of work together … so the social worker has to get prescriptions from the doctor. Some doctors, you know, you have to chase around; but not [doctor] … trying to get help is a full-time job.

Doctor is no-nonsense, forthright, honest … Well [doctor] is a special doctor, very professional with me, but very matter-of- fact. If she feels that I’m endangering my health, she gives me the facts as it is. I may get upset about it, but she doesn’t fool around with my health, and most of the time I have followed her advice, most of the time. It’s mostly been about my weight, and then when I come back and I’m maybe 5 or 6 pounds, I am very, very guilty and sort of apprehensive to see her, even though she doesn’t comment that ‘Oh my goodness, see…’ She’s not that kind of doctor, but I know she means business. But she’s a very kind and empathetic person, and I think that’s rare among some of the Physicians that I’ve had over the years.

Yeah, if I ask her, she is very forthright. You know I mean I don’t want to seem too gushy, but it’s just I’m just being honest in that she is just a wonderful Physician and she’s just an asset. I think she’s an asset. That’s all I can say.

Because she’s… Well outside of the fact that she’s incredibly nice, understanding, you can talk to her, and she takes care of business. She’s like concerned, and I hadn’t been back in like a year, because you know your yearly test, hadn’t really had any problems, and then when I called and made my appointment and when I went in she was like ‘You know I was just thinking about you the other day, that you hadn’t been in here,’

Yeah, she wants to know, and if she feels like I’m holding something back, I think she’ll figure out how to get it out of me.

They’ve got a system through the mail and they send you your diabetic supplies and they’re coming to my house, and I guess [doctor\ done called off on it

275 because she hadn’t seen me, so she said she wasn’t going to sign on it until she sees me.

Cares, is concerned about me Yes, yes, and I like that, because you have a lot of doctors out here that if you make an appointment, fine. If you don’t fine … and if you don’t come in for the next five years, it’s okay. So it’s good to have a doctor that cares. You know she reminds me of the doctors when I was a child, when they made house calls.

I like her and I trust her. She takes the time and listens to you. She cares. She’s concerned, you know.

Because first of all like, for instance [doctor] … the first doctor I had, I can’t think of her name, and then it goes to [doctor]. They treat you like you’re family. They care. You know you’ve got some doctors, you go in their office and you’re just a patient, you know, but they care. And if you see the visit, when you visit how me and [doctor] is, it’s like that all the time, and it’s just a loving clinic and they care.

Listens to me She really listens to me … and I know she spends more time in there with me than she’s supposed to. I know she does, but she’s not in a hurry to get out of there. She will sit there and listen and help you out, and she looks into things for you, and she tries to make things better for you, you know. But you know you’ve got to help yourself too.

She’s very good at listening to you. She’s a very good listener, and she remembers things too. That’s what I like.

Doctor treats me well even though I’m low income Well I like the clinic first of all because it’s in the neighborhood, you know, and I like it because although I’m low income, we’re still treated as like we’ve got money, you know, because there’s always been a problem, you know I’ve ran into problems like that, you know, because you’re low income, it seems like to me some places, they don’t give you the care that you expect to get by it being a clinic or a hospital, but they do here.

Very good doctor. I was utterly shocked and surprised that in this type setting, where you’re rated in this type thing, that you would have the quality of care that you get. So once I start working and stuff, I’m going to keep coming here. Yeah, I’m going to keep coming.

276 Returns my calls, calls me at home … I keep him well informed. And then you know if I call [doctor] with a problem, he will call me back …

I say ‘No. I want to talk to him. Just ask him to call me,’ and one thing for sure and too for certain, he always returns my calls and he talks to me about different things and it’s fine.

She cares, you know, and she’ll talk to you, or she’ll give you a call at home. She’ll call me at home.

Doctor’s use of the computer

One purpose of the Bolen (2015) study was to note the physicians’ use of EMR

during the visit and to gauge the patients’ opinions of this practice. In this analysis, use

of EMR is considered an institutional-level social determinant of health. Consequently, its use might be perceived by patients as a barrier and/or as a facilitator of their health care.

The respondents were specifically asked their views of the doctor’s using a computer in the exam room. With the exception of one individual who laughingly expressed reservations about “being recorded” (although he, too, recognized its advantages), the participants believed the computer to be an asset. They saw it as a safety factor, a memory aid, and an instantly available record of their health history.

One noted that referring to the notes resolved a question about previous treatment decisions. Another stated that the doctor physically positioned herself to be facing the patient, to maintain eye contact with him while she was using the computer. They also recognized the use of the computer as a memory aid for themselves as well as for the doctor. Many referred to the printouts and flowcharts of historical test results that the doctor had been able to provide them instantaneously during the visit. They particularly

277 liked this form of feedback and, in fact, took them home to refer to them. Another respondent, while recognizing that using the computer is “faster than a chart,” also acknowledged that there was a “downside”: “What do you do when the computer goes down?”

Well [doctor] when she’s on the computer, she doesn’t like… Like if I’m sitting here, like you know I’m on the (what do you call it?) the exam table, if she’s on the computer, she doesn’t sit this way. She turns. She’s always facing me and she works sideways, and mainly what I usually see her do is she, a couple of keys, and she’s looking at my history and the last time I was here and we discuss, we have conversation about it, and we might (how do you say it?) like touch bases with everything all the way up to the present.

You could ask her something and if she doesn’t have it right there, she will go get it. You know she goes to the computer.

I think for her, the doctor, so she can you know go back and say ‘Well such and such a thing, I did this and I did that. You did this. You did that. You told me such and such a thing.’ ‘Okay, that’s good.’ I think it’s good. I do. You know why? Because, like I said, she can’t remember everything, but she can go back. Sometimes she can’t remember if she saw you two weeks ago, you know, but then she goes back and say ‘Well I saw you such and such a day and we talked about this and we talked about…’ I think that’s good.

… the computer is good because it can catch mistakes if we are forgetful … yeah, that’s real good because what I forget, she has it in the computer. So say one particular time that I was here, I told her that everything was fine and that’s what I thought I told her, but in actuality that particular day everything was like topsy-turvy, and she goes over it with me. She says ‘No. Well on this day you said it was this, that,’ and she more or less refreshes my memory and I go ‘Oh yeah,’ and I explain why and the reason for that feeling on how I was doing that day.

You know after you get a certain stage in life you need not do that, and then seeing the volume of patients that they do, I think it’s good for the patient. It’s a safety issue. Every, the whole thing, it’s great.

Willing to negotiate treatment options … she’s supportive … okay, if she sees where I’m making progress but maybe I need a little bit of medication over here to help, she’s willing to work with me to

278 try to find something, the lowest dosage, whatever … she’ll say ‘how about a low dose of this? and we’ll try it and just see … if you don’t like it, let me know.’

But to get there with a 12-pound weight loss, it’s not going to be where we want it to be yet, so don’t get discouraged if it’s better and if you just don’t want to take the cholesterol medicine. We’ll keep watching it.

I just got the letter like last week, so I’m going to give it a minute before I talk to her about it, because like I say, I really don’t want to have to go on medicine, and this is why she didn’t prescribe it, because like we waited a minute before she even prescribed blood pressure medicine.

Oh yeah, we talked about [a flu shot] … she knows, you know. She always asks me and she says ‘I know you said no,’ and I just look at her and she says ‘Okay, but you’re going to take the pneumonia shot?’ ‘Yes.’

Respects my privacy If her lunchtime is scheduled at 11:00, unless there’s a patient in front of her, because she will finish her patient. And you never see confidential information laying around on the desk … I’ve seen people that are less professional …

Doctor’s advice, recommendations as motivating factor I slowed down [drinking] a lot and I am gon’ stop you know because I had stopped before, you know what I’m saying, but it’s good that she still brings that to my attention because you know when I look at it and because of my condition, I’ve got to really, you know, do what she tells me to do.

Exactly, and so of course if she recommends it, I’m all for it.

I’ve had that [colonoscopy] too. Oh that was a trip, but I did it. You know whatever [doctor] suggests, I’m the type of person like ‘Hmm,’ I’ll do it. I’ll have you know, ‘This lady is not just telling me to do stuff for her health, you know,’ so I do it, and it really wasn’t that bad.

I’m doing, and so you know and then she’ll tell me, you know, when she sends… After I’ve gone for my test and she sends my little results back and she’ll say, ‘You need to cut back on the sweets,’ you know, and so I do. I will. I cut back. You know they always give you the list of things not to do and to do, and I try to stay on those things.

Provides educational materials Well I’ve always gotten brochures from [doctor] all the time.

279 Yeah, so just little nuances like that, [doctor] and them taught me over there. And you know they gave you a meter and pretty much a booklet on your calorie counts and all that kind of stuff. So they really educated you.

Provides diabetes test/behavior guidelines So to have a little sheet saying ‘Your blood sugar level should be this in the morning, this before you go to bed. Don’t drive with it under 100,’ you know all that, it’s just necessary …

And that’s just a habit. I just take it every morning and it’s normally, because [doctor] stated to me that it should be 100 or less when I wake up in the morning, and it’s usually 90, 83, sometimes 73.

She described how I should be eating and what I should be eating.

Doctor gives definite “no” to something So I drink plenty of water, and since I went through the liver thing, I make sure I drink plenty of water. [Doctor] told me no more pop, so I haven’t had a pop in about a month, which is killing me, but I’m getting used to it.

Provides Diabetes Report, flow chart, progress reports Yeah, I find that very helpful because I want to know what my blood pressure is and what my levels are, and it’s all written for you in a statement like, and what your levels are, and it has the numbers on there where you’re supposed to be between the numbers, and so far I’ve been doing pretty good …

Right, they’re [print outs] helpful. I like it. It’s awesome to me, because you get to see everything and you get to know what your temperature was, everything, your blood pressure, your pulse. Everything. I like that.

… and it reads out and it tells you, because see I’m struggling with my weight. So I like the fact that she always gives me that chart because I keep it and I look at it and I know, and that motivates me …

Is thorough, provides feedback … you know if it’s something new occurs, I try to keep a note of what’s going on so when I go to her I won’t forget anything. And for her, she’s very good. She’ll check everything, all my stats and everything, and she keeps up with you know how I’m doing, you know, and if it’s something wrong, she’ll tell me.

Right, right, and then drugs and everything. She asks me questions, all kinds of questions. Just something that’s going to affect my health, she wants to know about it.

280 Doctor knows me Yeah, and ‘How have you been?’ and then I’ll tell her ‘Okay.’ She’s like ‘No. I mean how have you actually been? Not just okay. Tell me about what’s going on around you, surrounding?’ You know if I’m depressed, sad, what makes me feel happy. She really wants to know. She was that way from the very beginning.

However, she does know my temperament and my fears, and she is cognizant of that issue, so she just doesn’t say ‘And I want you to see the doc because you have this or that.’ She doesn’t do that.

Um hmm, and I feel like when she sees me, she knows it’s me. The other doctor (bless her heart), the third time I saw her she came in the room, ‘Hi, I’m Dr. R. Have I seen you before?’ I’m like ‘Oh my god.’ So she had done my previous two-year female exams or you know … ‘Have I met you?’ And so I was like ‘Wow.’

Gives permission not to deny myself – “enjoy life” I love that you’re exercising. I love that you’re watching what you eat, but enjoy life a little bit …

Yeah. She said you could cheat every once in a while, but you don’t, it’s not often that you do it, but you can.

Getting visit and test result reports in the mail I get a response that shows my triglycerides and all of that … a letter comes in the mail and it shows, and she writes if something specific, like ‘Your weight was this and this,’ and a notation as to watch out for that or whatever …

Right, right. Ice cream, diet ice cream. You know I read the labels and stuff, and so that’s how I’ve been like monitoring my sugar. She sent me a letter today saying that I was doing a good job with my sugar.

Not being an alarmist … and she always explained, ‘This is what we see, but I’m pretty sure that it’s not what you’re thinking, but I want you to have the test anyway,’ and that’s the way she has always approached me, that ‘I would like for you to have some additional tests.’ Not ‘I think you must have it’ …

Gives me everything I need when I leave appointment I think that’s awesome, because you know what? Because she comes back in … After she sees you, she comes right back in with everything that you need, and you’re going right to the desk and make your appointment, and I think it’s awesome,

281

Reminds me of annual screenings, appointments She will remind me of everything.

When I see him he’s ‘Mrs. , it’s time for your mammogram’

… because she told me when I was there last that I need to have them checked in September.

Yeah, I went on and got it done and it’s like she’ll call me and it’s like ‘Have you made that appointment?’

This is all the stuff that should be done at some point, so you know you had your colonoscopy. You had your Tetanus, but you need an eye exam. You haven’t been to the eye doctor a couple of years.

Considers family medical history in treatment decisions … she put me on the diabetic medication; but she told me ‘It’s not so much that your blood sugars are horrible, but because diabetes is so rampant in your family and kidney disease,’ she wanted me to have that extra little crutch there to make sure nothing was going to happen …

Understands financial situation Yeah, but that’s the main reason right now. I can’t really afford it, yeah, and you know as long as the stool cultures, she said it’s nothing problematic there, so you know I can just wait for a little bit longer.

[Doctor] taught me that if I ever have to go to the Emergency Room, go to [Clinic] because I’m rated.

There’s two ways to test. You know since you don’t have insurance, colonoscopies can cost like $1,500. They’re really expensive. So the other way to test for colon cancer is to do three stool cards where you put stool…

Doctor’s opinion of me Um umm. Like for a minute [doctor] didn’t say anything until she looked at me one day and she said ‘What happened?’ [referring to weight gain] I’m looking at her, ‘I don’t know,’ but I know. So she motivates me, and I think that mirror motivates me more than anything. That mirror.

Not being scolded She didn’t scold me. She actually said I wasn’t doing that bad; I just need to bring on more of the good stuff.

282 The conversation below, drawn from one of the interviews, succinctly portrays the esteem in which the patients’ held their Clinic physician:

Table 20. Excerpt – attitudes toward physician

Interviewer Has it been helpful to you, can you talk to [doctor] about pretty much anything? Participant Oh yes. Interviewer Can you? Participant I love her to pieces. I’m like ‘Why didn’t I have her before?’ Not that the other doctor was bad or anything, but I really feel that [doctor] cares. When she comes into the room, it’s all about me, and she lets me babble and she laughs at me, and but she doesn’t let me get away with like not checking my blood sugar, ‘Why aren’t you doing it? You know we’ve got to get you something,’ you know. Interviewer She calls you up on it, huh? Participant Um hmm, and I love that. Interviewer And that’s a good thing, huh? Participant I need somebody to hold me accountable, because I’m a very, you know, la- de-da, happy-go-lucky, ‘It’ll be okay.’ Interviewer So when you see her then, do you leave thinking ‘I’d better listen up’? Participant I spill my guts. Interviewer When you talk to her, yeah. Participant Um hmm, I spill my guts. I feel I can tell her anything. Interviewer Oh that’s good. Okay. Participant Anything, and I feel like she will give me everything that she has to help me, you know tell me all that I need to know, put me in contact with someone if she can’t help me. She’s very good. Interviewer And she does do that too? Participant Um hmm, and I feel like when she sees me, she knows it’s me. The other doctor (bless her heart), the third time I saw her she came in the room, ‘Hi, I’m Dr. R. Have I seen you before?’ I’m like ‘Oh my god.’ So she had done my previous two-year female exams or you know whatever else I… ‘Have I met you?’ And so I was like ‘Wow.’ Interviewer Didn’t feel very good, huh? Participant Wow. I mean even if she’s overwhelmed. Interviewer And then you were seeing her in like you said for… Participant Yeah, ’06 ‘til March of ’09. Interviewer For oh paps and stuff like that? Participant Everything, um hmm, sinus infections, you know … but with [doctor], she knows me when I walk in … and I believe she treats everyone like that. I believe that she doesn’t…I believe that it’s her motto, if you will, to be there for the patient that you’re with … and then when you go to the next room, you’d be there for that patient. You know, you cut off and go to the next. So she’s very blessed in that. She has a gift for being a good doctor.

283

Four additional physician-related factors appeared to motivate the participants to practice healthy self-management behaviors:

Knowing a doctor’s appointment was approaching Normally, if there’s not a problem, like yearly for my mammograms, and I know if I’m supposed to have something done and then when I finally call and make my appointment for my yearly exams, I know if there’s anything that I should have done, I’d better get it done before I see her … because a lot of doctors out there if you make an appointment fine, if you don’t fine.

Wanting to please the doctor, have a “happy” visit Right. So I know you know that what she’s telling me and things that she’s telling me to beware of and keep a watch on, I do. I take that seriously. So I see her in October. By then I’ll have the glucose machines and I’m going to have a list for her. I’m going to have a log. She’s going to be so proud of me.

If I don’t take her instruction seriously, you know, then we’re going to start having sad visits, you know, and it won’t be anything, any fault of hers. It will all be on me. So my job is to ask questions, if I don’t understand, and pay attention to what she says.

… then she said, ‘Okay.’ So then I just said this time I’ll just stick with it, stick with it, so that’s how I’m doing. Because I told myself, ‘When I go back, I don’t know how much I’ll been have lost, but I’ll been have lost something.’ She was really… She really hurt my feelings. I mean it wasn’t intentional because she was doing her job. She didn’t holler at me and stuff, but she was just trying to show me. And then when she crossed that leg over like that, you know [doctor] is kind of frustrated with you when she crosses her leg over.

Getting good test results Yeah, I use it [glucose meter]. I definitely use it because I know if I could keep my sugar down like I been doing, that’ll just let me know right there what range I’m in, what risk I’m in or in the high risk or low risk. I’m normal, that’s good, you know.

I think my A1C was 5.8, so with the medicine prescribed and me following the instructions, we do very well. As far as my blood pressure, same thing. All of these are big health issues, but they’re under very good control, because when you were in there, my blood pressure was 120 over 80,

284 Getting bad test results Well I think the first time, it was really crazy. I think I had like a panic attack, because my sugar had gone so high and it scared me to death, and so and then she was just checking to be sure, but yeah, nothing was really wrong.

So I haven’t got the results back yet, so she’s gon’ call me when they come in, and if it’s high, she’s gon’ tell me to come up there and she’s going to write me another prescription and she’s going to want me to take it, and I’ll try it.

After I’ve gone for my test and she sends me results back and she’ll say, ‘You need to cut back on the sweets,’ you know, and so and I do. I will. I cut back.

I’m trying to get myself really together, the diet. I take my blood sugar and it’s been like 101, 90-something. One day it was 80-something, scared me so bad I thought something was wrong, but they said no, it was okay. So it’s been running… I haven’t gotten anything over 115.

Diabetes diagnosis ipso facto - as motivator and facilitator

Several respondents described the circumstances surrounding their initial diabetes diagnosis, and many were made as a result of medical emergencies or discovered “by accident.” Two of the participants described emergency room medical personnel as being “shocked” that they were “still alive.” A few were diagnosed during a regular doctor’s appointment, and the respondents expressed “surprise” when told of the diagnosis. In another case, the participant was in a medical assisting class in which the classmates were testing each other’s glucose level. Not trusting the student’s ability, the respondent followed up with her doctor. One woman, during a road trip with a sister, “ate a whole bag of candy” and was diagnosed the next morning at a doctor’s appointment. Another respondent reported that she discovered her diagnosis during a physical examination required for employment, adding, “they wouldn’t hire me until I saw a doctor and got medication.” Still another was being treated for another health issue and diabetes was found “by accident.”

285 Well when they first found out that I had diabetes, my cholesterol was 400 and something. My hypertension was almost 4-something. My sugar was five almost 600m and they said ‘You’re still walking around and you’re still like a little bobblehead? You shouldn’t even be living.’ I’m like ‘Well God is keeping me here for a reason,’ and he just looked at me and he couldn’t do nothing but laugh. Yeah, because I came into the office. I called for an emergency appointment as a walk-in and that’s how we found out I had diabetes.

I ate that whole bag of candy and this was at 12:00 and I had to be at the doctor’s office at 9:00 the next morning to do that fast. I don’t know why I was so stupid, and then I got up and I said ‘Oh my god, I ate that whole bag of candy. I’m wondering if it’s gon’…’ It showed up. That’s how they found the diabetes. It showed up.

I was at work and we had a little class and we were taking each other’s you know sugars and mine was rather high … I didn’t believe it, so what I did … I went to the Emergency Room and I asked the doctor. He said ‘We don’t usually do this.’ I said, ‘Would you please make an exception?’ and he did it for me. So I believe him, because there were, a lot of people in that class really didn’t know what they were doing and I just didn’t want to take her word for it, the girl that did it.

Strangely enough I had this reoccurring yeast infection and I was going to another doctor at the time, and so he kept treating me for the yeast infection and then sometimes I told him that I would use like one over-the-counter, you know, and I said ‘And it just works for a little while.’ He said, ‘Oh.’ I said ‘Maybe a couple of weeks.’ He said, ‘Oh, well we’re going to try something else,’ and he tested me at that time for diabetes and it was up there.

…. and I went to [hospital] because at first I came in and they took my sugar and the meter wouldn’t read it … said my sugar was high, too high … she advised me to go [Clinic hospital] … she said, ‘Now make sure you go to the hospital, because it’s nothing to be playing with.’ … So I went to [hospital] and they admitted me and kept me there for a week …

I was so sick; she couldn’t suggest that I go anyplace. This was in the last year or so. I was really sick. I mean super sick. I mean wasting away. I mean I was in bad shape, and she was there to help me.

The first responses of the participants to the diagnosis were disbelief, fear, denial, and/or even surprise regardless of the circumstances at first diagnosis. Fear was a particularly powerful initial reaction and was ultimately a motivating force. The

286 participants understood the dire consequences of diabetes, from debilitating complications to death, if the illness were not managed properly. Many also had had family members with the disease and so were familiar with potential consequences.

One woman noted that a neighbor who had not been in control of his diabetes had died.

Some believed that they were perhaps destined to have diabetes since it “ran” in their families, another understood that she was, by virtue of race and weight, at risk, a third couldn’t understand why he was diagnosed since “it doesn’t run in my family,” and a fourth was surprised since she thought “only fat people get diabetes.” Respondents were very much aware of diabetes complications (mentioning death most often), and provided a length listing of its ramifications: amputation, blindness, kidney problems, coma, and negative psychological effects.

… When you get the diagnosis you be frightened … you always get frightened when you’ve got something that you never had before or something like that, especially when you thought you were pretty healthy.

I feel I’m doing pretty good with that, but I’ll just say I hate knowing that I have it, but I’ve got diabetes running through my family.

Interviewer: What concerns you most about the diabetes? Is there anything in particular? Participant: The fact that it can get out of whack and kill you.

Um hmm. She said, “You know what? Your blood sugar is up.” I said, “My blood sugar is up?” She said, “Yeah, it’s 160-something.” I said, “You’re kidding.” Well that took me for a loop though, and then I said “Oh, okay. Okay, I’ve got to do something about that.” I threw it out of my mind. That’s what I did.

I don’t want to, and the guy on our street died from diabetes. Wife couldn’t wake him up the next morning. He was out of control with his diabetes, though,

287 and I don’t want to get like that. I don’t want my husband to get like that. So we’re going, we’re just going to do what we’re doing and keep on doing it, yeah. Um hmm.

And then last year I was diagnosed with Type II Diabetes, being African- American, overweight.

Yes, because I know it can cause other problems, you know. I’ve seen people with diabetes with amputations and blindness and you know that type of thing, and you know I don’t worry about it but I know that it could happen you know if I don’t do what I’m supposed to do.

Yeah, because the first year I didn’t take it serious because it’s ‘Why me? It happened to me.’ You just don’t know. You hear about diabetes and stuff, you know, but you just don’t know (you know what I’m saying?) and I just didn’t take it serious. I do now.

You can go into diabetic comas.

My issue about the diabetes, you know, because it’s a lot riding on diabetes. You know you can lose your sight. You can you know lose your limbs, and I just want to do the old… I mean I shouldn’t say… Words is powerful. You’ve got to be careful what you say. I just want to not have it. I just want to do what I have to do to get the weight off me, you know, and just hope it be gone, you know.

Oh heck yeah. Yeah. Having no diabetes is no fun. I was reading an article in Harvard Medical Journal just the other day, because I read a lot, and they were talking about the psychological affects that diabetes has on the people that have it.

Although fear and denial played a role initially, the respondents explained that they “struggled,” “came to grips with,” and ultimately accepted the diagnosis. They came to realize, despite early lapses and denial, that they wanted “to live” and thereby had to confront the challenges of controlling diabetes.

It’s up to me to do what I need to do … just buckle down and say ‘Look, do you want to live or do you want to die?’ … I mean no one else is going to put it to you like that. You know they’re going to say ‘Well you need to do this and your sugar’s going to go up or your blood pressure is going to go up,’ but no one’s actually going to look at you and say ‘Do you want to live or do you want to die?’ … but I can say it, because I know it’s the truth. I would tell you.

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Right, and it’s like I mean those are my, that’s my alternative. I either live or I die. It’s that simple.

You’re struggling with something; you’re going to keep on continuing until you get it. So I had to keep on telling myself, ‘I’m struggling. I’m struggling. I’m struggling,’ and ‘I want to live. I want to live. I want to live.’

One respondent’s account, in particular, captures the mental processes involved

in her coming to accept – and deal with – her diabetes diagnosis. At first she was in denial. Finally, the realization of the consequences of not attending to the diagnosis

“registered.” After “coming to grips” with having diabetes, she informed her daughter and “did something about it” because she doesn’t “want to die.”

Yeah, I was eating. Then I thought, ‘You’d better do something.’ When I went back it must’ve went up some more. That’s when I, the bell went off, ‘You’ve got to do something about that. You cannot do that.’ And then after that she had put me on the pills, but when I came back when I was taking it, I think I must’ve stopped doing everything because it really, it registered. It really registered in my mind, ‘Well you know you’re a diabetic. You’ve got to do better’ … [the diagnosis] kind of tore me up a little bit, you know. ‘I’m a diabetic? Not me.’ Well I wrestled with it for a while, but you’ve got to come to grips with it, so because you’ve got to do something about it. So when I finally came to grips with it, I told my daughters I had it. They said ‘Oh well we don’t want to get it,’ and my daughters are bigger than I am, and I’m surprised my baby girl don’t have it … Um hmm, ‘You got to do something about it. You’ve got to. You could die. You could die.’ Um hmm, so believe me … I don’t want to, and the guy on our street died …

Although for most people the denial and fear lessened as they came to know more about diabetes and felt more comfortable managing it, some said that it remained

one of their biggest, if not the biggest, health concern.

… and but when I got this diabetes, that scares me because I know people that… I’ve got a friend now from school, we were just at a picnic and his diabetes, he got his toll, and he wears this boot you know and where he said he’s been had it since he was a kid, Juvenile Diabetes. So it had it all his life when we were in school. So that scares me the most, because your kidneys can fail. You can lose

289 your vision. I mean that’s scary. That’s really scary. That’s my biggest concern is diabetes. Out of everything that’s going on with me, that is.

Just watching my diabetes, I guess is what I’m most concerned about right now.

Actually my diabetes. I really work with it to keep it under control.

That’s[diabetes] the big issue for me … the high blood pressure, that don’t bother me or scare me as much. The diabetes scares me, you know … I’ve been sick …. I’ve had this thyroid for years, you know, but when I got this diabetes, that scares me …

Other respondents, while concerned about and committed to managing their diabetes, listed other comorbidities as equaling or overtaking diabetes as a current source of disquiet. This finding underscores the role of comorbidities as an intervening factor that, at times, complicated the treatment of the diabetes and/or affected the patient’s management of it (e.g., one respondent believed that medications she was taking for diabetes were in conflict with those she was taking for another health problem).

Well the diabetes and the blood pressure are tops, the heart disease and my knees.

Nothing but my headaches right now.

Not really. I’m asthmatic.

Interestingly, one man, after describing of a litany of health problems, injuries, and the serious illness of a sister, when asked “what concerns you the most right now about your own health?”, answered: “Nothing. I’m fine … I have it and just it’s a part of life. I just live with it [various health problems].” Another man, who had described his emergency room diagnosis in somewhat dire terms (“… they took my sugar and the

meter wouldn’t read it because it was too high”), answered to the same question, “my

290 liver and taking care of this gout.” These responses, as with those immediately above,

suggest that when people are facing numerous health problems, diabetes, while a

concern, is not always at the top of the “concern” list.

Information, knowledge

One of the most powerful factors in the respondents’ growing acceptance of

having diabetes was becoming more knowledgeable about the disease and the best

ways to manage it. Knowledge, new information facilitated their changing from denial

and inaction to acceptance and action. As noted before, many individuals and dynamics

played a role in this regard: the doctor, family, friends, the Clinic dietician, diabetes educator, diabetes classes, popular culture media sources (e.g., television advertising and shows, news reports, et al.) and their own research efforts to be better informed.

For some respondents, acceptance was a process; diabetes was something they had had to “live with” for a while before they were able to come to terms with it. Becoming informed was a significant part of this process.

Yeah, but you know with awareness comes acceptance, and it’s a process. If you’re aware of something, ‘Yeah, so I know,’ but do you accept it? Then once you get a level of acceptance, because this whole thing with diabetes, when I was diagnosed and stuff, I was like ‘Oh no, not me. I ain’t got… I’m just a little sick now. I’m not gon’ have to do this and not have that and this,’ and low and behold I’ve got it and you’d better do what you’re supposed to do. If you don’t, you gon’ be sick. So having some, being able to think and communicate and stuff is a beautiful thing, and so you go and you take your insulin, you try to eat right with your food and everything and then you just keep going. So with awareness, then you have to accept it, and that’s a whole process that you go through, and that might’ve took me a couple of years or something just to really accept it, after I was diagnosed with it.

The more I read about it and learned about it, you know, and saw the things that I could do to sort of help, then you know I sort of calmed down. So you know I still know that you know it’s a danger, but I don’t really worry about it.

291

Another particularly powerful motivation was their discovering (and appreciating) that they did not have to make necessarily drastic changes in their eating patterns and that successful diabetes control, within limits, did not necessitate their denying themselves. They, in effect, “got permission” from the doctor, the nutritionist, and diabetes educators that they were not required to totally “deny” themselves. They learned that dietary requirements were not so onerous as they had originally believed.

She described how I should be eating and what I should be eating. She said ‘You can eat practically anything you want, but it’s how you eat and how much’ …

When you get the diagnosis you be frightened, and also they tell you about the diet, so you just cut out everything and just go strictly by that diet, and that’s what my sister was telling me. She was telling me, ‘You don’t have to be like… You can eat, but you just do it moderately,’ but I was so petrified ‘til I just ‘Strictly diet.’

Not at all, and that’s the thing that changed from ’94 ‘til now. They made diabetes a friendlier disease as far as eating. It’s not watch you eat. It’s the portions that you eat and the amounts that you eat that really matter. Now I wouldn’t say go out and buy a five-pound bag of sugar and sit down and have that for lunch now. No, that’s not gon’ happen, but I’m just saying.

And when I was talking to the Nutritionist, because I told her, I said ‘Is there any way I can get off of this diet?’ She said ‘What is it?’ I said ‘It’s meat and green vegetables.’ She said, ‘Oh, come in. We’ll talk,’ and she checked out my records and she said, ‘Oh yeah, you’re ready.’ So now she had a plate that she uses, the example. It says like your meat and potatoes, no more than what your hand can hold, and when it comes to vegetables, you put both hands together and if you had a third one, add that. She said ‘Load up on your vegetables,’ she said ‘because your vegetables are what’s gon’ control the body itself. See your meat and potatoes, that’s like your protein and your starches, but your vegetables are the main thing that you need, that and your fruit.’

Another pivotal element in the participants’ acceptance and self-management of diabetes was learning that they could control it, that it was within their power to control it, through attention to diet, exercise, medication, and regular follow-ups with the

292 doctor. Morever, they not only learned of this possibility, they incorporated it into their belief system.

Well because I’m knowledgeable about what can happen when the body shuts down, how urine poisons the system, and so I think about it. I don’t dwell on it, but I do think about it, and so I’m more conscious of my weight, salt intake and things like that, but I know that I have it and I know that I can’t reverse it, but listening to your physician in terms of your health, you can like delay. Like I have diabetes, but diabetes still continues its damage, but you still can control it …

…. we [church pastor and his congregation] believe that if you take care of your body it’ll take care of you. There are some things you may not be able to control, but the most things that people are afflicted with probably are self- inflicted more than hereditary, more than accidental, so what we try to practice is not harming ourselves.

You know, yeah, I pretty much said ‘I think I might be able to control it.’

Don’t let it [diabetes] get you down, you know. Don’t let the diabetes beat you. You beat the diabetes. Don’t let it control you. You control the diabetes, you know, you control the high blood pressure. You control that cholesterol. Don’t let it control you, because if you start letting stuff control you, that’s when you get sick, you know. So you got to control it, and go on with your life.

So I’m thinking even though it does run in the family, the chances are that go back to eating right and lose weight, exercise, that I might be able to stabilize it a little bit.

A significant factor facilitating successful management, then, was the respondents’ belief that they were, in fact, in control of their diabetes, albeit acknowledging occasional lapses. In other words, being in control appears to breed control: Success is its own reward.

... and so my diabetes right now is controlled … right now it’s managed through diet and exercise.

Actually my diabetes. I really work with it to keep it under control. I think my A1C was 5.8, so with the medicine prescribed and me following the instructions, we do very well. As far as my blood pressure, same thing.

293 Right, I’m feeling 100%, I can go and do a job now, because before I really couldn’t work. I couldn’t even think straight. The diabetes was out of the control. It has you confused.

You know then I noticed something too at first. Last summer I had a hard time going down the basement steps, going up and down them. Now I could run up and down them … [legs hurt] and I be out of breath, but now I go right on up. I could tell the difference. I could just run right up. I couldn’t even walk down the steps, because I had one step at a time, and now I just run down there and I’ll just run right back upstairs.

One respondent spoke at various times throughout his interview about how the treatment of diabetes had changed over the years. He believed that new treatment modalities and technologies made it much easier and less painful for patients (literally and figuratively) to manage diabetes now than it was in the past. This seemed to be, for him, a motivation to pursue a healthier lifestyle in the present. In an interesting adjunct to this line of thinking, the respondent’s comments also suggest that he believed that in the past, having diabetes was “stigmatized” and, somehow, “shameful.”

I had gone through that when I was first diagnosed back in 1994, but some things had changed … like different foods that you eat, you know what I’m saying, as far as the perception of being a diabetic patient. Back in 1994 it was a totally different scene. Now it seems to be more acceptable. You know a lot of people are getting diabetes, you know what I’m saying so and then just like I didn’t know about corns and peas. They’re not good for diabetics. That’s something that I learned.

… now we’ve got so much better stuff and better medicine, and people are able to control their sugar now, whereas before heaven only knows, we didn’t even know. We didn’t even have the Hemoglobin A1C test …

I think it was 25 or 30 years or something, but that was in ’94, so that’s like the ‘60s or like the ‘50s, somewhere in there, people would have sugar and they’d just waste away and then they’re gone. So he said with the invent of insulin and all the rest of this stuff, you’re able to live.

They give you choices, whereas before was when I first got diagnosed, it seemed to be more rigid …

294

So it’s a few inconveniences, but it’s worth doing because you want to live, because if you don’t, you’re going to die. Because like the guy, he told me when I was first diagnosed with it, I was graduating from and it was a German guy and he was telling me you know, ‘Mr. , 20, 35 years ago you wouldn’t even be making it,’ because they didn’t really have a cure for it. They didn’t really know what to do.

The Clinic

Although there are many reasons the Clinic can be considered a motivator and a facilitator of patient health self-management, one of the most important aspects, along with the physician, was its sliding-scale fee structure. Many respondents would not have had access to health care were it not for this program. Additionally, most of the patients would not have been able to afford medication were it not for the services offered by the Clinic’s social work staff, who worked tirelessly (it would appear) to help patients get the medications they needed for free. Similarly, many study participants would have been without health care services were it not for Medicare and Medicaid. Other alternatives, for example, a free clinic and federally funded health clinics in the area, were inefficient, understaffed, overworked, and overcrowded with patients, as measured from a patient’s vantage point.

As discussed earlier in this report, while the above public health initiatives made it possible for economically disadvantaged people to receive healthcare, each fell far short of meeting the financial needs of the study participants. Be that as it may, the

Clinic offered several “products” and services that facilitated the patient’s health self- management efforts. These included educational opportunities (e.g., a nutritionist, diabetes classes); an Ombudsman; a Financial Counselor; social work services that were

295 critical in the patient’s access to free medications; several services under one roof (e.g.,

pharmacy, medical laboratory, radiology, access to specialists); dental services; an

“Advice Nurse,” and a Women, Infants and Children (WIC) program. Peppered throughout the visits and the interviews were references to various Clinic locations and services, services available at the main hospital campus, pharmacy services, medical specialty doctors, et al. At every step of the way the physician served as a navigator, guiding patients to available resources and services in both the hospital system and the community at large.

Diabetes classes … [doctor]put me in a Diabetic Program too, over at [main campus]. [Doctor] recommended over with M and them over [Clinic]. It’s a Diabetes Program where they tell you how to eat, what to buy, show you how to read the meter, tell you what these various tests mean and just general education on diabetes. I had gone through that when I was first diagnosed back in 1994, but some things had changed.

Nutritionist When she told me that I was a diabetic, they send you to a dietician to put you on a diet to teach you how to eat, you know, and that’s what she does. She told me how to do my food and everything. That’s how I lost the weight by the diet that she gave me …

Financial counselors on campus The spenddown people are at the main campus. They’re a Medicaid Spenddown Group over at the main campus.

In addition to tangible services, the respondents described several reasons they

appreciated the Clinic and the healthcare system of which it was a part. These positive comments concerned primarily the staff and the general culture of the healthcare system of which it was a part. Most of the participants spoke often of the professionalism, friendliness, competence, and efficiency of Clinic and hospital

296 personnel, from front desk personnel to the nurses to technicians (with a few exceptions described below). Some commented specifically that they enjoy their Clinic visits because “they know me there.” Other Clinic “likes” included an employee going

“beyond the call of duty” in helping them, being told what to expect (e.g., wait times,

“let us know if you haven’t been seen after 15 minutes”), honesty, and convenience.

“They care” … from the nutritionist, because I see the Nutritionist, from [name] the financial counselor, all of them they just, it’s like they care …

Professionalism of staff She’s been with [Clinic system] for so many years. Professional. Professional and pleasant, and I mean when you can get somebody that’s actually helpful. She has a great rapport with the doctors.

I was approached in a very nice and professional manner. Everything was explained to me thoroughly. I had no problem, because you were professional in the exam room.

They weren’t overly friendly, but they were very professional. They’re very busy.

“They know me” I’ve been to the Dental Clinic and the Pulmonary, X-Ray is nice and everybody calls you by your name: ‘Hi Ms. . How you doing?’ ‘I’m fine. How you doing?’ and I always got a joke for them. So we all get along.

I say they pretty much treat me like I’m the only patient… They treat me like I’m their only patient and I’m in a five-star restaurant and hotel. I’ve always felt that way. They smile. They greet me. I mean I have no problems.

Yeah, they know me, even the counselors, they see me … they got a chance to meet my son when he brought me up here one time and my grandson. It’s I’m the second, my son is the third and my grandson’s the fourth … they schedule appointments for me and everything, and they tell me at any given time, whether I’m scheduled for an appointment or not, if anything comes up as far as like medication, pain, anything that’s out of the ordinary, just come in. Don’t even hesitate. Call us, let us know you’re coming and that’s it.’

297 “Customer service” … I said ‘Is there an Office Manager that I could speak to?’ ‘Yes. Do you want the Office Manager?’ ‘Yes.’ ‘Okay, if you have a seat I’ll be right with you.’ So I sat on down. So she came back. ‘She’ll see you,’ and so she greeted me at the door and took me back to the lady, and when I told her what I had experienced she was like, ‘No.’ I said ‘Yes.’ That’s what I’m saying, she said no … she had no clue, and she was like, ‘Oh no, that is not appropriate, ever. Ever,’ and she was very upset, and so she said, ‘I will be dealing with this.’

Nurse: The Social Worker will probably be able to help you better than me. Patient: Yeah, well I’ll see her the next time I come in. Nurse: Well no. I mean if you need your glucometer to test your sugar, then that’s important, but I’ll look. Let me see. It’s just we’re doing like fifty zillion things. Okay, I’ll look at that. If it’s just a phone call, I could go ahead and do that.

Being informed re waiting time expectations Well presently I like that there are signs where there are time limits. If you haven’t been called in a certain amount of minutes, you can go up and ask the representative, you can explain to her ‘I’ve been here for 20 minutes, 30 minutes and I haven’t been seen yet,’ even though I know that this is a public clinic and you can’t just come in and right away see your Physician, but you’re going to sit somewhere for 30 or 40 minutes and you’re not acknowledged, but now they have signs up stating that if you’re not seen within x amount of minutes.

Nursing I call , and your nurses do a good job of checking on me. I like them.

I’ve not had any problems with Nursing Staff at all. In the years that I’ve been coming here, since this was built, I have not had any complaints, any personal complaints about the nurses at all.

Several services offered at one clinic location Yeah, she’ll you know send me a note saying you know she’s ordered a mammogram. You know sometimes when I go to see her, she’ll just send me to the lab right then and I’ll just go while I’m there.

That’s over in the other place where I’m going for the foot doctor, to see the nutritionist, the eye doctor, the foot doctor, medication, the pharmacist is all over there, and that’s at [Clinic] location.

… when I go to see the liver doctor, I’m going to that same building on [Clinic], I’m going to the foot doctor. See everything is in that building over there.

298 Coordination of care … so that’s what I really need, because I have a lot going on, and it helps me when my caregivers kind of work together …

Honesty And the gentleman finally was honest with me and said, ‘Ma’am, I’m so… I don’t mean to cut you off and I’m so sorry, but I just was put at her desk and if you could see it, it’s stacks and stacks and file.

Courteously taking the time to problem solve He said, ‘If you hold a moment, I’ll see if I can find yours.’ So he put me on hold (I appreciate him), and he said ‘I see some paperwork with your name on it,’ he said, ‘and here, I have your file, but it’s rather thick, so it will take me a while to go through it in order to be able to help you.’ He said, ‘If I could ask you to call me back in about a week, it’s chaos, I’ll see if I have something for you, and if I find out something I’ll call you beforehand. You know I’m sorry,’ and he was. I couldn’t be mad at him. It just was like…

Convenience It’s right up the street. I just went somewhere that was close. I can walk there.

So you shoot in and just like it took me all of less than ten minutes to get here to see you. So it’s so convenient.

Perceptions of the Clinic and its parent healthcare system

A few participants commented on their perceptions of the Clinic and of its parent

system vis-à-vis other medical facilities in the area. In their eyes, the Clinic offered superior healthcare services and staff. They were able to enjoy not only (almost) affordable healthcare (in addition to professionalism and competence), but also a caring environment, an epithet not ascribed to other institutions. As noted earlier, most of the respondents began going to the Clinic when they learned of its sliding-pay scale

structure. Some expressed surprise to find that although they “were rated,’ they

received excellent healthcare services. They did not expect low-income people to be served in such a caring manner.

299 Yeah, so I can say [Clinic healthcare system] kind of saved my life a few times, because my brother died from the same thing, hypertension, my mother, my grandfather.

Well I like the clinic first of all because it’s in the neighborhood, you know, and I like it because although I’m low income, we’re still treated as like we’ve got money, you know, because there’s always been a problem, you know I’ve run into problems like that, you know, because you are low income, it seems like to me some places, they don’t give you the care that you expect to get by it being a clinic or a hospital, but they do here …they treat you like you’re family. They care … it’s just a loving clinic and they care.

I was utterly shocked and surprised that in this type setting, where you’re rated in this type thing, that you would have the quality of care that you get. So once I start working and stuff, I’m going to keep coming here. Yeah, I’m going to keep coming.

There is this analogy among a lot of people that ‘Oh you don’t to go [hospital]? Oh my god. You’re going to [Clinic]? How can you go to [Clinic]?’ I think they’re even better. I mean they may have merged now, but the treatment that I have gotten from this system was A1 and I have been in the hospital, had surgery and everything, and I would recommend [Clinic healthcare system] to anybody. I just always had excellent physicians … I was never ashamed to tell anybody, ‘I go to [Clinic healthcare system].’

Difficulties with Clinic

Some participants recounted less than positive experiences they had had at the

Clinic but noted that they had occurred in the past, that the situations had improved, and that Clinic supervisory staff had been responsive to their complaints. Those complaints related primarily and prominently to rude, unprofessional, and/or incompetent staff, particularly those at the front desk.

Font desk staff The receptionists, they were sometimes rude and you know and so I just called to inquire as to who should I speak with concerning that, and so the one that I had talked with, I haven’t seen her up there anymore, so maybe they moved over to a different location or something, but that was the only thing …

300 It only happened once to me, and that’s when I had to report it to a supervisor, and what happened, I had signed in, knew exactly what time I signed in and I sat and I sat and an hour went by, but I saw other people who were behind me, they had been called and I didn’t quite understand that. So after about an hour I went up to this particular representative and I said ‘You know I’ve been here for over an hour,’ and so she never looked at me directly. She turned her head and did her finger like that for me to go to the next person, and that’s when I was so angry. That’s when I got a supervisor, but I didn’t get a response from her. But I never had any problems after that.

She used to snap at you and just you know you’re new coming in or you don’t know something, I mean, and just the way she’d just say it to you like you know. Like, ‘Okay, hello. This is my first time here, so I don’t know. You know I don’t see any signs that’s telling me, you know,’ and she just had just that attitude. I don’t know if it’s just her personality. Some people just have that personality, you know, and you can be mistaken, but some people just have that personality, but I feel they shouldn’t be… If a person’s acting like that, you should be in the back somewhere where no one has to see you.

Oh yeah. I haven’t had a bad experience ‘til just not too long ago, and it was here and it was a lady at the front desk, and she was very cold and I can’t even describe it, except it was grossly unprofessional and ghetto. I was in distress.

Yes, and I think I saw her one time like in the back area here. I think somebody said that she was on phones or doing something. I’m like, ‘She shouldn’t be talking to anybody. She should work with dead people.’ She should not be… No one should have to experience that …

Well my problems were with the representatives who I… Let me see how I can put it. Their behavior was, is such, is that ‘I’m in power and you either have to do this or do this,’ because even here years ago you know I reported several of them to the Supervisor directly. I asked someone to go get them because the attitude was so surly as though you know ‘You either have to wait or too bad.’

Telephone appointment staff Yeah, within the last maybe three or four months, several times I called in and you know I may have gotten an individual with an attitude, which people do not realize that the intonations of your voice tells a lot, and the quickness of trying to, the quickness of the person on the other end rushing, when you said ‘Hold on just a minute. This is what I’m looking for. This is what I want,’ you may get someone saying ‘Hold on!’ … So I do think that overall that really needs to be addressed in that the person on the other end is rushing you when you’ve trying to explain ‘I’d like to see this doctor because this is happening to me. I need a

301 prescription. Is it possible I could speak to a nurse?’ that type of thing that I think should be addressed …

The study participants approached healthcare personnel in a respectful manner; they expected that approach to be reciprocated. If it were not, they did not hesitate to seek changes and to advocate for themselves. One of the hallmarks of this analysis was the level of maturity, self-possession, and self-control of the respondents: They were

adults, they attended to health matters in a professional and mature manner, and they

recognized that they were “not the center of the universe.” They understood that

doctors were busy, nurses were busy, clinics were busy, pharmacies were busy. As long

as they were informed and treated with respect, however, they were more than willing

to make allowances and “await their turn.” They appeared to be fair, but firm, resolute

in advocating for themselves and, in many cases, for other family members in matters of

health.

You know I feel like if you give respect you’ll get it …

I don’t need to be chatted up. I expect professional behavior though. Greet me. If you see me walk past and I look confused, ask ‘Can I help you?’

… the last time I was here to see [doctor], within the last week, two weeks, it’s because they were so busy. The doctors were just backed up, and so when they’re backed up like that, you know I went up to the desk and they explained ‘Well it’s backed up. There are no rooms available. We’ll let you know.’ But never just have you sitting out there. Sometimes it’s you may have an appointment for 3:00, 4:00 and you may not see the doctor until 5:30, but I understand. I mean there’s nothing you can do if the rooms are backed up and the doctors are busy with patients. I mean you can’t… If there is no room available, then you know it’s your choice to wait or to reschedule. So I’m used to it. I bring books to read and puzzles and things like that.

… I still received my medication right away. I may have to wait 45 minutes or an hour because people are busy, but I was willing to wait.

302 … well I understand you know when you come to a public place that you have to wait.

But I understand that you know you just can’t come in and say ‘My appointment is for 2. I want to see the doctor.’ It doesn’t work like that.

Well it hasn’t been a lot of times that I had to wait a long time, but it has happened because they’re so busy and you know and they explain to you, you know ‘The doctors, they’re backed up.’

…. a lot of people are like ‘me first, me first,’ and it don’t work like that all the time. When I come to places like this or go to a doctor’s office trying to get applications for jobs, something like that and there’s a waiting room, I walk in, the first thing I do is look for the magazine rack, because I have it in my head, ‘I’m going to be here,’ I automatically figure two hours, right off the bat. So I get comfortable and I find me an article and start reading.

Other past issues with the Clinic included difficulties using the telephone to schedule appointments; miscommunications affecting physician follow-up and pharmacy orders; inability to make timely appointments with physicians; and coordination of care issues (i.e., the doctor’s not knowing what other doctors in the system were doing or had done on behalf of a patient). Only a couple respondents had used the dental services; most indicated they went to “private dentists,” and several believed the costs of Clinic dental services to be prohibitive. When having difficulties, the respondents sometimes noted that the situation was not the fault of a particular staff member but rather a function of bureaucratic inefficiencies.

Problems getting medication. Oh I haven’t had any problems. You have to call in, call the prescription line and then within 48 hours you get a response. So maybe once or twice I didn’t get a response. I had to come up here, but it wasn’t the fault of the maybe the person didn’t listen to whoever was calling in. It was phone line problems where the electronic voice, it just would stop or there was static or something like that … I still received my medication right away. I may have to wait 45 minutes or an hour because people are busy, but I was willing to wait.

303 …I had a problem because I didn’t know I ran out. So when I tried to get [medication], they told me I didn’t have a refill, so I called last Thursday to get a refill and she told me that she was gon’ send my prescription over, right? … she didn’t do it … it was not faxed on June 8th. I just got the medicine Wednesday, this Wednesday. That’s how long I was without it. Then she tells me she had to wait 48 hours. I asked her, ‘Why couldn’t you tell me that that morning?’ You know, had me waiting. So actually I’ve been on one pill.

Problems making appointments And I mean it was like something that she really wanted me to have done before I went back to see her, and so she called and made the appointment and then what was supposed to happen was [Clinic] was supposed to send me the letter or all me, and if they called I might’ve missed it on the answering machine, but I never got the letter and it would’ve said ‘You have an appointment for such and such a test on such and such a day.’

… but it’s hard getting in to see the foot doctor here, so my appointment if for September. In case somebody just don’t show up, then they’ll call.

The only thing I just have against is when I need to talk to Ms. M that I can’t reach her or leave information, tell the nurse to have her call me, my name or something. They don’t never do what they do. That’s the only problem I have so until I set up an appointment. Like I told her, I said like you know they’ve got me like when I set up an appointment like a month, I’ve got to wait a month or maybe two, three weeks, and if something happens in between, I’m going straight to the hospital.

Problems getting timely doctor’s appointments Well the only thing I’m displeased with is when I need like, when I need my medication and I call, about me being a diabetic, somebody will answer the phone, one of them Interns, whatever they are, and I was trying to tell them that I need to see my doctor and they would like ‘Well I can’t get you in until next month’ or something like that. I say ‘I’m a diabetic. I can’t wait to no…’ you know.

I was sick for about six weeks before I could not even get to see her. You know what I’m saying? I saw different doctors. I went to Emergency. I spent a lot of money just trying to find out what was wrong with me, and you know naturally you have to spend $50 when you go into Emergency, but that’s just how bad it was, and when I finally got to see her, I had to wait that time to get to see her.

Problems reaching the physician The only thing I just have against is when I need to talk to [doctor] that I can’t reach her or leave information, tell the nurse to have her call me, my name or

304 something. They don’t never do what they do. That’s the only problem I have so until I set up an appointment. Like I told her, I said like you know they’ve got me like when I set up an appointment like a month, I’ve got to wait a month or maybe two, three weeks, and if something happens in between, I’m going straight to the hospital.

Well for the patient, me, myself taking care of my health, I’ve got to follow advice and instruction on certain things. Then on the doctors’, I just get upset when I can’t… Like she’s my Primary Doctor, she’s my care doctor, if I can’t get in touch with her when I need her really, then that makes me upset.

Other motivating and/or facilitating health self-management factors - “not elsewhere classified”

Several other considerations motivated the participants to pursue healthy lifestyles and to schedule regular doctor’s appointments and annual screenings. These factors also served as facilitators to those ends. They included: weight and appearance concerns; the role of religion and spirituality; personal resolve and will power, taking responsibility for their health; recognizing that the aging process presents added health management challenges; “paying the price” after a dietary lapse; “being tired” of feeling or looking “bad”; feeling better mentally and physically after a period of following recommended diabetes self-management advice; receiving positive results; the influence of friends; motivating others to pursue a healthy lifestyle; learning to like healthy foods previously avoided; avoiding foods previously liked; and, as alluded to

previously, having a family history of diabetes and other health problems. One prevalent

motivating factor was to “get off” or reduce medications by losing weight and

exercising.

Taking responsibility In addition to the above, an overriding belief motivated these participants to

confront their health issues: the belief that they alone were responsibility for their well-

305 being. That it was up to them and them alone to make the necessary changes to control their diabetes. The doctor was there to help; the Clinic and its resources helped, and their family and friends helped. But overall, their belief in their own responsibility propelled their health decisions and behaviors.

I think the doctor’s responsibility is to tell me, and mine is to do.

Tell me if something’s wrong with me, which way/route I should go. It’s my responsibility to get there, because you know if you don’t make up your mind to do something about yourself, how is it gon’ get done? It won’t get done …

Yeah, and then you go to the acceptance and then you do it. So with this diabetes, it’s pretty much on you, because if you don’t eat right and you don’t take your medicine, the doctor can’t be there 24-7 and it’s a 24-7 disease. I mean it’s always with you.

I feel basically it’s my responsibility to do what I know I’m supposed to do. Well then if that doesn’t help, then I think the doctor is supposed to step in there and you know do something, tell me something or give me something or whatever, and I don’t think there’s no more after that, you know.

When she gives me the readout that’s everything that’s going on me, my responsibility is to do what she’s telling me to do, to take my meds like I’m supposed to take my meds, to take my insulin like I’m supposed to take my insulin. When she sent me to the Nutritionist, to do what A told me to do, watch what I’m eating, just to maintain, you know. It’s not all on the doctors. They can only do their part, but we also have to do what we have to do. We’re the ones that’s sick, so we have to just you know maintain our health.

The doc for me is the knowledge person that knows, okay. My responsibility is to be active. You’ve got to be active in your own health care. You’ve got to be proactive. You’ve got to act, but if there’s something that’s bothering you, you’ve got to ask the doctor, then the doctor makes a recommendation on what he or she thinks you should do, and then like I say, then you know. Then you go through the process of accepting.

Yes, we believe that your body is a temple for the Lord and you need to care for it, and we believe that if you take care of your body it’ll take care of you. There are some things you may not be able to control, but the most things that people are afflicted with probably are self-inflicted more than hereditary, more than accidental, so that is what we try to practice … [pastor]

306

Will-power, resolve Another critical facilitating factor was the participants’ resolve and will power

that helped them confront the challenges of managing their health. They spoke often of the strength of will it took for them to eat properly, exercise, attend to the diabetes regimen required of them. Others acknowledged that strength of will was a factor, but that, for them, the challenges were not that difficult to overcome: They just “did it.”

It was just like something within me said, ‘Okay , remember you made a promise. You said you wanted to see your great great grandkids. So in order to do that, you’ve got to be around. So if you want to be around, you’ve got to stick to what you’ve got to do to keep yourself alive.’

I can try to discipline myself. Don’t do that. So I stopped. And see, look. To tell you the truth, I’m spiritual, and for one thing, I always try to talk to God about a lot of things, okay? I can hear like when he’s saying, ‘Don’t do that. Don’t do that.’ So then I say, ‘Well if he’s saying don’t do it… It’s all in my mind. Push it aside. Leave it alone.’

It hasn’t been hard cutting down, no. Not if I want to lose this weight and everything. It’s not as hard as you think. You can do it. You just learn not to… You learn to change your way of eating. You can do it.

… it’s just locked in, just like if I’ve got to do something then I get up and do it … and it’s just the way I am, and I’ve always been that way.

That’s willpower. That’s one of the hardest. If you don’t have that willpower, you just won’t do it, you know. So it’s the willpower. It’s mind over matter. That’s what I had to say. It’s mind over matter, you know, and I tell myself, ‘You can do whatever you want to do if you put your mind to it, and it’s not hard,’ and so that’s what I do. That’s exactly what I do.

Engaging in hobbies, outside interests, activities Many respondents spoke of pastimes, outside interests, activities, and hobbies

that engaged their interests and energy and, at times, helped them cope with their

illnesses and life difficulties in general. They talked of volunteering, being a member of

307 the Eastern Star, being active in the church, tinkering with fixing things, gardening, cooking, reading, exploring avocational opportunities, music, drawing, painting, repairing automobiles, line dancing, and myriad social activities with family and friends.

Some respondents spoke of being active in various church activities.

Right, and the one [daughter] that’s a teacher, she’s even, she’s more in touch than the others, because we have those flowers and yard work and stuff in common, so we spend a lot of time together.

Culinary. I love to cook, love to do new things

It’s one of my, I call my relaxation hobbies: drawing, painting and music. Stereos, I like to work on electronics and stuff.

Yeah, my daughter picked up paperwork for me and I’m looking over it, because I’ve always been interested in landscaping. At one point I thought about when I retired about opening an adult daycare.

Right, and then the automotive, it keeps me strong doing that, working on this and that.

I’m an Eastern Star. Do you know what an Eastern Star is? … in the Masons. I travel. I take my time for me, trust me.

Yeah. I love to feed people. I used to cater just so I could feed people. I used to cook big meals just so I could invite people over so they could eat,

I teach church school, and on the Trustee Board, Deaconess Board. You know it’s not something that I just got to do all of the time, you know, and working with the children, I do this every year. We have you know like vacation bible school and we have the free lunch program and you know bible study for them, and I like doing that. We take them on field trips and things, yeah.

… music is a big part of my life. It controls my attitude, my anger, my position about myself. Then I like a lot of attention … just get the love from the crowd. You know people talk good about you when you do good things … right, emotional, big time. And sometimes I could feel myself, when I feel like I’m down and out or in a stressed moods or something, I go grab my guitar and open up the books and get my mind on something… [participant a musician and in band].

308

Recognizing that others “have it a whole lot worse”

Several respondents commented that while at times they bemoaned their having diabetes, they also were very much aware that others suffered greater ailments and life woes than they did. Then the despair morphed into appreciation that they were doing as well as they were doing.

Um hmm, I’m kind of relieved, but you know it’s one out of three people have diabetes, so ain’t no sense in me trying to pity myself, because sometimes I get into that pity mood, but then again I say to myself, ‘You could be a whole lot worse.’

And I look around me at somebody that’s worse off, you know, so I’ll be grateful I don’t have no more than what I have. And I try to do the right thing to keep from gaining anything else, you know.

I think about this and this and then I hear about other people’s problems and I think ‘Who am I to complain?’ I’ve been lucky …

Learning to like new, healthy foods … when I was young I just didn’t care [about diet]. I even find myself eating carrots now. I had to draw them in dressing, but I did. I tried to get the light dressing. I never dreamed I would eat a raw carrot, oh.

So I learned a lot, so I’m doing a lot of different things, and I’m cooking a lot of different recipes and I’m liking it, because I was a funny eater. You know certain things I wasn’t going to eat, but now like asparagus, love them.

No longer enjoying “unhealthy” foods I used to like … but you know, since I’ve kind of changed things, I don’t particular care for like donuts and stuff. They’re so greasy … when you get away from that stuff and you try it again it just, I couldn’t do it. I even tried to eat a candy bar and it made me sick. It just, ooh. I haven’t touched that again. It doesn’t take but one time.

It’s a lot of stuff that I just eat periodically, and then it’s a lot of things that I used to eat I don’t have the desire to eat it anymore.

Weight/appearance I was truly miserable and I looked at pictures of myself and I said ‘No,’ because I thought I looked really attractive in my clothes and when I lost weight and I saw

309 the difference, I said I looked horrible. I said I actually was that heavy where my stomach was out to here when I’m sitting down.

Yeah, and then plus, oh, my great niece took my picture. She caught me off guard. Oh my god, I’m like, excuse me, but I’m like ‘Who the world is that?’ It was me. I said ‘Oh my god.’ I couldn’t believe that. I said ‘I’ll use this for a before’ and then do an after.

Feeling better after “doing the right things” I feel better now. I can tell the difference with the weight off, because I can keep going now. The pace is better, but you know when I had that extra… Any weight loss is better, because I can just tell the difference. I don’t have to stop and look at somebody’s step and wish I could keep up . . .

Everybody said “, you really, really walk better. You look better.” I feel better. I really feel so much better. I can’t believe … I try to keep my daughter, and my friend down the street, she started [walking] and it just feels good.

If I keep on the way I am now, I can walk really good and go up the hill at the park and it don’t bother me now like it used to. I can go up the steps. It doesn’t bother me at the park it used to. I used to be , but now I can go up there and with that weight off of my, oh I feel, I got a lot of energy. I do.

So I was able to do that. When I came back here, my first visit I had lost like 8 pounds. I was like ‘What?’ … and so I’m like ‘Wow. Yea, things are going back the right way, and I want to keep it going. I want to keep it going.’

Family experiences with diabetes, runs in the family … Yeah, and you’ve got to take your medication, because if you don’t, you’ll start losing limbs, eyesight. I don’t want that … because I ain’t had no… Yes, I did. I had an aunt. She lost both of her legs before she died … Yeah, and well she lived a long, good life. She was like 84, 85 years old. She was a diabetic.

… they always tested me because it runs in my family rampant. My sister, my middle sister was Type I Diabetic and my mother became Type II. I don’t know if she was Type II back then, or if it came [later] …

It’s also, it’s in the family, but to have gone this long seems like before I gained the weight and I always got tested and there was nothing. So I’m thinking even though it does run in the family, the chances are that go back to eating right and lose weight, exercise, that I might be able to stabilize it a little bit.

310 Being able to eliminate or take lower doses of medications if diabetes controlled Yeah, they said if I be on a diet plan, that’s supposed to help my diabetes, but sometimes I found out that if you keep your weight down a little bit and you exercise daily or regularly that you can get rid of diabetes.

She suggested that maybe it was time to go on medication, which I really don’t want to do, okay, so what I’m hoping to try to do is get myself, lose a couple of pounds by the time I go back and do some exercising, get the diet right, go back to eating like I normally do, which I haven’t been doing. I mean when you’re by yourself, sometimes it’s kind of hard. It’s like ‘Yeah, I’ll just fix a sandwich, maybe a peanut butter and jelly’ whatever.

She said it was normal, my blood that they took. That was normal. That’s why she said that like my diabetes really isn’t… I guess it’s being controlled. Whatever I’m doing, the diet and everything is controlling it, and they take you off the medication if everything’s controlled for a while, but you have to be on it for so long.

I’m using treadmills, weights, free weights … because I have gained weight and I can feel it. High blood pressure runs in the family …. I know with my age and weight that’s not helping … I think if I lose the weight and get myself in better shape I can probably come off the blood pressure medications … go back to eating right and losing weight …

Right, and I think if I lose the weight and get myself in better shape I can probably… My goal is to hopefully be able to come off of the blood pressure medicine.

Reviewing weight history charts … see I’m struggling with my weight. So I like the fact that she always gives me that chart because I keep it and I look at it and I know, and that motivates me because I know if I look at it and it’s going back up again and I go there, she’s going to get on me, you know, and like and she’s only helping me. I’m 53, and but all this weight, I’ve never you know been a diabetic, but it’s the weight that caused me to be a diabetic.

Getting older She said, she just told me about diabetes, people that are diabetics will usually start losing their eyesight, which people will start getting to need glasses and stuff and checked my eyes. That was all right, but I’m a go check that out too. I’m 50 years old. I’m getting older, so I’ve got to take care of myself …

Yeah. I just, it’s just not my cup of tea. That’s why I said, just being… You know I know we get older and we have conditions. You wake up in the morning, it’s like

311 ‘That didn’t hurt yesterday.’ So these things we have no control over, but some things I feel like I do have control over and I’m going to do what I have to do.

Paying the price for dietary lapses It makes me be quite aware that I know I’m a diabetic, I’ve got to watch myself as far as what I’m eating, what I’m putting in my body, because if I overdo some of the things that I ain’t supposed to do, I know something gon’ happen.

For instance, going out to eat with my girlfriend. We go out to eat, and I know that when we used to go out to eat I used to eat whatever, but now I have to maintain and say, ‘Okay, I’m a diabetic. I don’t want to go over.’ Now I did that before and I paid for it. When I got home that night I thought I was going to have to call the paramedics (you know what I’m saying) because just sitting up there with my girlfriends and not being… I felt to me I wasn’t being myself because of the way we used to eat, but I was being myself. I should’ve been myself because I knew I was diabetic. Now they’re not diabetics; I am.

… If I have something that I know is not good, like I just made a cheesecake for my husband and he had a healthy piece and he gave me a healthy piece this morning, so I didn’t want to be like ‘Oh no. Oh, first thing in the morning,’ so I ate it. I’m still paying for it.

“Being in control of my diabetes” So but I’m controlling it. I’m controlling it. I’m doing a good job as far as controlling it, you know.

Okay. I control my sugar. See I’ve been a diabetic for about four years now …

There are some things you may not be able to control, but the most things that people are afflicted with probably are self-inflicted more than hereditary, more than accidental, so what we try to practice is not harming ourselves. [Pastor]

I guess it’s being controlled. Whatever I’m doing, the diet and everything is controlling it.

Being, feeling empowered, motivating others I said, “Look, just get yourself into some kind of exercising program. You’ll find out there’s a big difference.” It’s a big difference.

Then my one girlfriend, she said ‘, you’re a diabetic. You eat all that stuff?’ I said, ‘I can eat whatever I want to eat,’ because I just wanted to fit in. But now she said, ‘Oh, you do.’ I said ‘Yeah, I’m doing right,’ you know, and I just watch it, and I tell them, ‘You all don’t need to be eating that, or y’all gon’ wind

312 up like me,’ you know because that’s the way I turned it around, you know, and we all laugh about it, but that was hard.

Yeah, I just tell them, ‘Watch yourself,’ because you know they get the same symptoms that I had and if they don’t control their sugar, they gon’ be in the hospital, no limbs, eye sights, and you know they know just as much as I know about it, you know, because their doctors done told them too.

One thing about me, I’d have to speak. As you can see, I’m a talker, and I like to motivate people, too, myself. You know what I’m saying? I’m just… And some people I talk to, they say ‘, you motivate me,’ you know and that’s what I, you know… but I would like that, and this would be good to just, you know, and share your recipes and share your… because I could show you a lot. I mean I really, really invested in diabetes.

I watched them [work colleagues] and I told them. I said, ‘You know that’s bad for you.’ I mean every single day it was the burger and the fries; every day when they came in to work … I don’t think they wanted to gain that weight, but I don’t think they had enough sense to know why or think about it.

Tired of feeling bad Because I’m tired of feeling bad …

Having options Nobody likes to be controlled. See when you have options, it’s not like it’s a hand reaching in, like Adam Smith, the invisible hand, reaching in and controlling everything. When you have choices, then you’re reaching out. You dig what I’m saying.

… but now they say ‘If you do this, then don’t do that. If you do that, then don’t do that.’ They give you choices, whereas before was when I first got diagnosed, it seemed to be more rigid: no cakes, no pies, no candy, no this, no that …

See now when you have choices, I mean anything, with any type of medical thing, if you have a choice, it’s better because it’s a whole mental thing that you’ve got to get used to if somebody tells you ‘Don’t do this. Don’t do that.’ You be like ‘Yeah, well it’s my life. I’ll do what I want to do.’ But if they say ‘Well

313 if you choose to do this, then don’t do that. Then this is what you’ll get if you do that,’ then it makes sense. Then you’re involved.

Friends Somebody, you know you really need somebody to say something to you maybe to motivate you a little bit, or you’ve been there and done it, so maybe they’ll go there and do it, you know.

My friend, she would go crazy, man, but she knows I have diabetes and stuff, so that’s why she brings the apples and fruit and the candies, you know small hard candies.

… now I have a couple of friends and you know we sort of talk to one another and sort of see if anything is off balance or something like that and we sort of keep each other accountable, you know.

And then a friend of mine, she told me about rating and everything over here at Metro, which I did not even know about, and that’s when I came and got rated and that’s when I started this course with [doctor] and that’s when she helped me get my medicine through those pharmacy programs that they have working with the Social Worker

Religion/spirituality [Participant is a Pastor] Yes, we believe that your body is a temple for the Lord and you need to care for it, and we believe that if you take care of your body it’ll take care of you. There are some things you may not be able to control, but the most things that people are afflicted with probably are self-inflicted more than hereditary, more than accidental, so what we try to practice is not harming ourselves.

I pray to God and I said I hope everything is okay. Please give me strength and the faith to adhere to whatever, even though I may be fearful. I do pray …

Yeah, it does, because when you’re into the spiritual, into the church or whatever and times that you’re feeling down, it’s different verses that you can read that will pick you right back up, and you don’t just give up. Some people when they find out they’re sick, they just give up. They just think their life is over. You know what I’m saying? But when you’re spiritual-minded, you’re into the church or whatever, that’s just me, and you just feel so good, and I don’t like

314 to miss service. You know I’m faithful going, you know. When I’m sick, okay I can’t go, you know, but I used to, but like the Minister said, ‘You’re sick, then you’re going to make everybody else sick.’ You’re coughing, you’re hacking all over the place. You’re interrupting the service with all that coughing, got to keep getting up, so I learned how to stay home when I’m sick, you know. But it does. It helps. Different verses, it helps, you know. And he tells you, you know, especially when you’ve got a Minister you can talk to and some of the Brothers you can talk to and you know, it helps.

Then I read the bible. If you read the bible, it’ll help, so that’s it.

Not wanting to be a burden … because I don’t want to be a burden to my husband.

The fact that I want to see my grandchildren grow up. I don’t want to get down health wise where I have to go and live with my daughter and her family. When I had the back surgery, they were wanting to like move me out of here and move me with them and it’s like ‘Oh god, no. When I don’t know who I am, you can do what you want.’ I don’t want to have to, I’ve always been independent. I don’t want to have to depend on people.

315 Chapter Six: Conclusions, Discussion, and Implications

Conclusions

This study’s results, as expected, provide plentiful and often vivid “answers” to

the two research questions posed at the beginning of this endeavor – what social

environmental barriers do African Americans adults with diabetes face in their efforts to

self-manage the disease and what strategies do they use to overcome those identified barriers.

In addition to providing answers to the two specific research questions, study findings are instructive in additional ways, several of which are discussed in greater

detail below. These findings relate to: the doctor/patient relationship; the role of the

Clinic and the safety-net hospital system in enhancing diabetes self-management

behaviors; co-ordination and continuity of care issues; the degree to which discussions

of medications dominate the office visit; the physicians’ use of EMR during the visit and

the patients’ perspectives on its use; and the complexity and demanding nature of the office visit for the physician. Other study findings remain subjects for future analysis

(e.g., the physicians’ integration of patient education throughout the encounter; strategies the physicians used to manage the flow of the visit and strategies they used to treat and help patients self-manage their health).

Findings also demonstrate the problematic nature of designating many if not

most social environmental determinants of health and health behaviors as definitively

barriers, facilitators, or neutral in function. The designations are contextual. They vary

for different people and for the same person at different times and in different places.

316 This phenomenon remained true across all five SDOH domains in the social ecological

model: intrapersonal, intrapersonal, institutional, community, and public policy. For

example, while Medicare, Medicaid, and/or safety-net hospital system benefits made

medical care accessible for the respondents, the funding levels were insufficient to meet

their healthcare and living needs. Similarly, while family was a primary source of social

support in all ways (informational, instrumental, emotional, appraisal), at times it also

presented challenges for patients striving to meet their own as well as loved ones’

needs. Some respondents assumed caregiving responsibilities and a few described

struggling with deaths in the family and relatives with severe illness or trauma.

While, overall, the meanings attached to SDOH are contextual, it is also clear

that the most significant and far-reaching barriers the study’s respondents confronted were economic in nature. It is difficult to find any aspect of the respondents’ lives (with the exception of one or two individuals) that economic deprivation did not affect, including their efforts to self-manage and control diabetes and numerous other comorbidities.

These economically-related issues included: low paying, low status, high stress jobs; physically and emotionally demanding jobs; difficult, unethical, incompetent, and/or unprofessional supervisors; having a limited income; depending solely on Social

Security for income; long-term unemployment with no success finding a job; lack of health insurance; insufficient health insurance; inability to afford insurance co-pays; receiving public assistance yet still unable to afford health care; inability to afford high quality, nutritious food; inability to afford exercise facilities and clubs; inability to afford

317 glucose meters and diabetes supplies; inability to afford diabetes and other medications; and lack of transportation options.

Similarly, other SDOH were clearly faciliators of well-being and positive health beliefs, attitudes, and behaviors; and these, too, are reflected in each of the five levels of the social ecological model: intrapersonal, interpersonal, institutional, community, and public policy as illustrated below.

Intrapersonal psychological factors played a significant, facilitating role in the participants’ self-management of their diabetes. They demonstrated: robust resolve and will-power, albeit with momentary lapses; self-efficacy, believing strongly that they knew how to control diabetes and that it was within their power to do so; maturity and self-control, recognizing that they were “not the center of the universe” and were more than willing to “wait their turn” in crowded and busy healthcare settings; and assertiveness, both extending and expecting respect in return in their dealings with doctors, Clinic personnel, and the various financial counselors they worked with to obtain healthcare funding assistance and other benefits for which they were eligible.

Another significant factor in this realm was the respondents’ commitment to gathering as much information and knowledge about diabetes as possible wherever and whenever it was available. They took a proactive stance and found that with knowledge they were better equipped to both face and to manage the disease. Being better informed also bolstered their confidence that they could and would control their diabetes. Sources of information were varied and emanated primarily from their physicians, whom they implicitly trusted. They also attended diabetes classes, visited

318 with the Clinic’s nutritionist, consulted family and friends for information about diabetes, researched the internet, read extensively, and looked to the media and other cultural artifacts for information and advice (e.g., television advertising and programming, reading medication labels, talk show hosts, etc.).

Spirituality played a significant role in the respondents’ lives in helping them deal with life’s problems, particularly health difficulties. They spoke often and at length about their beliefs and trust in God, in the power of prayer, and about how their church affiliations and activities strengthened their resolve to manage diabetes.

Interpersonally, family, friends, and colleagues served as stalwart facilitators of the respondents’ positive health beliefs, attitudes, and behaviors. They provided all manner of support - emotional, informational, instrumental, appraisal, and spiritual – and motivated the respondents to live a healthier lifestyle.

The primary institutional factors facilitating positive patient beliefs, attitudes, and health behaviors were: (1) compassionate, caring, culturally competent physicians;

(2) the Clinic’s staff, policies and procedures, services, physical location, and milieu (i.e., all designed to meet the needs of the neighborhood’s disadvantaged population); and

(3) the resources and services of a safety-net hospital system, primarily its sliding-scale payment system.

It is impossible to overstate the role of the physicians as a facilitating and motivating factor in the patients’ successful management of diabetes. A close reading of the verbatim comments presented in this report demonstrates that the Clinic’s physicians participating in this research practiced exemplary “culturally competent” care

319 for their patients, from the vantage points of their patients. “Culturally competent care” has been defined as follows:

“Culturally competent care” is understanding the importance of social and cultural influences on patients’ health beliefs and behaviors; considering how these factors interact at multiple levels of the health care delivery system (e.g., at the level of structural processes of care or clinical decision-making); and, finally, devising interventions that take these issues into account to assure quality health care delivery to diverse patient populations (Betancourt, Green, Carrillo, & Ananeh-Firempong, 2003, p. 297).

There was seemingly no end to the accolades the participants attributed to their doctors; and they most appreciated that, while caring, their doctors were “no nonsense,” “honest,” and “forthright.” Most importantly, the respondents felt “listened to” and delighted in the belief that their doctors knew them as distinct individuals with families and stories and histories and life problems: “She knows me …. she really knows me.”

The four physicians participating in this study had worked within the safety-net system for an average of 18 years. Three of them had worked in no other healthcare system. More importantly, the doctors were committed to serving a disadvantaged population and, at times, made personal sacrifices to be able to do so. The quotes below from the four physicians showcase the philosophy underlying their “culturally competent” caregiving practices and strategies:

So we were sort of from birth instilled in the Social Justice Ministry and that we’ve got to take care of the people there who are least able to take care of themselves, so I always knew that I wanted to serve in an underserved community …

I had an interest in taking care of the urban poor and the people without insurance, and working for [hospital] you had to make a certain amount of money in your practice to pay your staff and your salary and your… so if you

320 didn’t make that much… so they didn’t really want a lot of poor people in their practices, you know …

It’s been very positive, and as far as patients and you know getting a feeling for being part of the [Clinic] community, because the [Clinic] community I think is a little different than a lot of other communities … there’s sort of a civic spirit here and some pride. We have a lot of working poor, but there is more of a sense of community here than I think perhaps in other places.

I mean you know like I said today, I ran into the woman at Subway and you know run into people at the library, in the grocery store and kind of like that, like family, you know, and I have a better sense when people say ‘Oh this is where I’m living’ or ‘This is where my kids go to school,’ and it actually means something to me, whereas when I was on the west side it was a little more [different] …

The Clinic is located in a primarily African American neighborhood, and most of its patients reside in that neighborhood. Some of the study participants could, and did, often walk to their appointments; some because they had no other choice (being unable to afford a car or public transportation); others, because they tried to integrate exercise into their daily lives.

The Clinic has several services on site as does another nearby clinic in the same hospital system that the patients in the sample used extensively. Having several services available at one location in each case served to increase accessibility to healthcare. Both clinics offer the services of social workers, financial counselors, nurse practitioners, medical specialists, diabetes educators, nutritionists, ophthalmologists, and other medical specialists at designated times during the week. The research clinic has on its premises a radiology department, lab, dental clinic, a nurse practitioner, and a Women,

Infants, and Children’s (WIC) service center. The most important feature of the Clinic and the healthcare system of which it is a part is a sliding-fee scale, arguably one of the

321 only reasons the respondents had access to healthcare to begin with. It is suggested

here that the location of the clinic, its services, and its general culture (existing to serve

a disadvantaged population) may explain in part the degree of success the patients had

in managing their diabetes.

Study respondents believe that use of EMR during the visit is beneficial for both

the doctor and themselves. They believe EMR improves not only the overall quality of

the medical care they receive but also their ability to manage their health. For them,

EMR provides a safety factor, a memory aid, a source of helpful management

information (e.g., flowcharts, details of study results), and an instantly available record

of their health history that provides context for immediate treatment plans. It is

noteworthy that several respondents specifically mentioned the doctor maintained eye

contact and directly face them while using the EMR/computer (e.g. “… she turns … she’s always facing me and she works sideways”).

Community-level facilitators of positive health behaviors include accessibility to food banks and local farmers’ markets; the services offered by local health and human services organizations (e.g., health clinics, Planned Parenthood, The Free Clinic); and public parks and spaces available for exercise and other recreational pursuits. Climate, too, is a community-level factor affecting patients’ exercise decisions. Climate conditions are particularly important in this sample because patients are limited in their options, being unable to afford indoor exercise clubs and facilities. Additionally, many were struggling with infirmities that come with age such as aches and pains, arthritis, and an increased number of comorbidities. The respondents often referred to weather

322 conditions and season of the year – too cold, too hot, too damp, et al. - in deciding

whether and where to exercise.

Community-level barriers to healthy living and behaviors included lack of affordable exercise opportunities, neighborhood crime, the ubiquity of fast food restaurants, lack of access to high-quality, nutritious food, and lack of residential

amenities.

Public policy programs significantly affected the patients’ access to health care

services and medications. It is highly probable that the patients would not have been

receiving the quality care they were receiving were it not for the safety-net hospital,

Medicare, Medicaid, and other publicly funded initiatives. At the time of the field work

for this study (2009), 42% of the sample Clinic’s patients were enrolled in Medicaid

(16%) or were uninsured (26%). In contrast, region wide (eight healthcare systems), the

percentages were respectively 9% and 12%. It is also probable that most of the

respondents would not have been taking their required medications were it not for the

services of social workers who facilitated their receiving medication for free, the

assistance of their doctors, and the availability of cheaper (if not totally affordable)

drugs at select retail locations.

However, a particularly noteworthy finding of this study is that at the same time

public funding facilitated access to healthcare and healthy self-management behaviors,

it arguably functioned as a barrier as well. Available funds were insufficient in covering

the medical needs of the respondents, especially in view of their other living expenses.

Time and again they referred to their struggles in affording even the minimum of

323 diabetes self-management requirements (e.g., glucose meter, supplies, medications, visiting the doctor regularly, medically necessary tests and screenings). They also mentioned, again despite receiving assistance, foregoing expensive medical tests and screenings (e.g., colonoscopies), needed dental work, and, at times, taking their medications. If they did have insurance coverage, it was insufficient and most could not afford the co-pays.

Additionally, the respondents described, often in great detail and at length, the tedious, demeaning, dehumanizing, unending bureaucratic hurdles they struggled to overcome to obtain assistance: incompetent, unprofessional, uncaring staff; complex policies and procedures; conflicts between the different funding options; various and too many missteps, mistakes, and miscommunications. For one woman, the process itself posed health risks and caused health problems: “I’m telling you, it’s been a full- time job to make sure that I get and keep the assistance that I have … so that became overwhelming to me stress wise and anxiety.”

As noted in the introductory paragraph, the patients often and at length described the myriad strategies they employed to overcome health management barriers, and these are presented in great detail in this report’s tables and verbatim comments. However, a brief review is in order since this was one of the primary purposes of the analysis. The examples of strategies presented below reflect the emphasis on the four behaviors critical to the successful control of diabetes: diet, exercise, medication adherence, and blood sugar monitoring. The doctors addressed each of these four behaviors at length during each visit.

324 Diet management strategies included eating in moderation; using substitutions

(e.g., Splenda instead of sugar); “eating more fruits and vegetables”; allowing oneself

“wiggle room”; eating at specific times during the day; “just being more conscious about what I eat”; not denying oneself; following the doctor’s recommendations; forgoing or limiting fast food, fat, salt, and sugar; cooking things “differently,” et al.

Exercise management strategies included exercising at home using equipment or watching exercise tapes; walking in public parks or in the neighborhood; exercising with a friend or relative; integrating exercise into daily life (e.g., walking up and down stairs, cleaning the house, babysitting grandchildren, attending line dancing classes); establishing an exercise routine; et al.

Glucose management strategies included testing at specific times during the day or relative to meal intake; recording results for personal use and for the physician; routinizing the task; “listening to my body”; “experimenting”; “following doctor’s recommendations”; et al.

Medication management strategies included: “knowing,” “listening” to my body; participating with the doctor in making medication decisions; “experimenting,” learning the efficacy and side effects of a medication by trial and error; using a pill box; reading medication labels; routinizing the task; at times, if deemed necessary, deciding unilaterally not to take a medication before telling the doctor; following up with the doctor about all behaviors and decisions with regard to medications.

Also prominent in the study findings was the extent to which the office visit was devoted to, at times dominated by, discussions involving medication management.

325 These conversations occurred as the need arose throughout the entirety of the visit and included references to: review and reconciliation; side effects; cost; appropriateness of substitutions; dosage decisions; refill requirements; time of day or diet restrictions; drug interactions; method of ordering (mail, discount drug, et al.); pharmacy accessibility; health insurance coverage; ordering procedures (EMR, Clinic procedures); availability of free medication; number of days of supply; type (generic vs. brand); discussion of options; over the counter vs. prescription; drug interactions; assessing adherence; consultation with the Social Worker; co-ordination of care issues; and discussions of a drug’s function, use, efficacy, and importance.

A further striking finding of this study was the respondents’ complete, unquestioning belief that they and they alone (in partnership with the physician) were responsible for controlling their diabetes. While they may not have been clear on its etiology in their particular case (other than attributing it to genetic factors or being overweight), there was no ambiguity regarding the locus of responsibility for its management. In the one case in which a respondent did note that Blacks are at greater risk for diabetes than Whites, she at no time questioned why this might be so. No respondent linked their health problems to social and environmental factors with the possible exception of several who attributed being under great stress because of their jobs.

Their emphasis on individual behavior, of course, is not surprising given that that has been the focus of healthcare management strategies (and interventions) for decades, if not for hundreds of years. The respondents – we as a society – lack the

326 sociological imagination to link our private problems with public policies, injustices, and

inequalities; we lack the “awareness of the relationship between personal experience

and the wider society” (Mills, 2000).

Finally, study results underscore the complexity of the office visit for primary

care physicians: The physicians in this study masterfully – and artfully – managed to

address, in a relatively short amount of time (the mean length of the visits was 31

minutes with a range of 18 to 49) a plethora of issues involving care of the whole person while at all times listening and responding to the needs and concerns of the patients.

During the visits the physicians addressed: the social environmental, primarily economic, barriers the patients faced in trying to maintain diabetes control and manage their health; multiple comorbidities; acute concerns; all manner of medication issues (as enumerated above); cancer and other health screenings; inoculations (flu, pneumonia, hepatitis); diabetes tests (A1c, kidney, eye exam, foot exam); review of systems; review and implications of past test results; co-ordination of care issues; sexual health; family planning; and review of behaviors involving sexual activity and the use of drugs, nicotine, and alcohol.

The Clinic doctors “performed” as medical experts, mental health counselors, life and health coaches, cheer leaders, negotiators (crafting mutually agreeable options with patients), schedulers, coordinators, confidants, educators, interpreters, diagnosticians, navigators (to community resources), and facilitators (e.g., helping patients obtain medication). The physicians participating in this research, as professionals and as

327 altruistic human beings, are exemplars for primary care physicians who seek to provide a

caring, healing practice.

Discussion

Study findings and theory.

This writer argues, as initially theorized, that the findings of this study support the Marxist-Conflict perspective proposing that the “base,” the means and relations of production, determine in large measure a society’s “superstructure,” the ideas and practices of other aspects of living: culture, ideology, norms, social institutions, and political and legal structures. The participants’ financial difficulties colored almost every aspect of their lives and affected health management options available to them.

Similarly, study findings corroborate Bourdieu’s conception of “distance from necessity” in demonstrating that lifestyle choices are determined largely by one’s standing economically. That is, the more time, energy, and money one must expend simply to acquire the necessities of life, the more one’s agency is circumscribed.

From a medical perspective, in their research Mercer and Watt (2007) found that the most deprived patients have a greater number of psychological problems, more multimorbidity, more chronic health problems, and more long-term illness than less deprived or advantaged patients (p. 503).

In an intimate, committed health care partnership, a patient’s struggles and issues, social as well as physical, become the concerns of a compassionate physician.

This study illustrates the increased demands, in numbers and in complexity, placed on primary care physicians serving disadvantaged populations. Being poor and

328 disadvantaged makes every aspect of life more difficult, for both the doctor and the

patient. Findings reflect the theoretical undergirding of this project: the work of Marx,

Engels, Bourdieu, Virchow, Allende, and the legions of other clinicians and scholars (e.g.,

in the medical community, Mercer, Watt, Bayliss, Fortin, Ferrer, Carrasco, et al.) who acknowledge and address the difficulty of becoming and remaining healthy while poor.

As discussed in the Theory Section, consideration of five middle range theories also contributed to this study’s analysis and interpretation: Cockerham (Figure 1, p. 38);

McLeroy et al. (Table 1, p. 57); Brown et al. (Figure 5, p. 60); Walker et al. (Figure 6, p.

61); and the WHO conceptualization of the influence of SDOH on “health equity and well-being” (Figure 7, p. 62). Middle range theories attempt to link and integrate empirical findings with theory. Merton (1949) considers that middle range theories:

lie between the minor but necessary working hypotheses that evolve in abundance during day-to-day research and the all-inclusive systematic efforts to develop a unified theory that will explain all the observed uniformities of social behavior, social organization, and social change (p. 448).

While all five SDOH models contributed to the framing of the interpretations herein, the WHO (2010) and the McLeroy et al. (1988) conceptualizations most nearly

“match” the life experiences of the study’s respondents. These two models consider and explicate, to an extent greater than the remaining three, the institutional, community, and public policy influences on health.

The WHO model in particular addresses the social structural causes of health disparities and inequities (i.e., “government, macroeconomic policies, social policies, public policies, and cultural and societal values”) and places social structure prominently as a “first level” determinant of health and health inequities. It is noteworthy that the

329 model relegates “behaviors and biological factors” to an “intermediate” level of health determinants, thereby emphasizing that while behaviors influence health, the behaviors themselves are influenced by “upstream” structural factors.

The McLeroy et al. model is relevant to the results of this study because it includes and defines five levels of influence on health, levels which have been referred to repeatedly throughout this report: intrapersonal, interpersonal, institutional, community, and public policy. As apparent throughout this report, the safety-net hospital and its services, the culturally competent physicians, and the Clinic’s location and mission to serve disadvantaged populations were largely responsible for both the respondents’ access to medical care and their attainment of relatively good diabetes control. Importantly, the model also recognizes “community” and “public policy” factors as SDOH. The roles of Medicare, Medicaid, Social Security, and other publicly funded health and social initiative play a prominent part in the lives of the respondents in this study and render health care services accessible to them.

In contrast to the above two models, Cockerham’s conceptualization considers only individual behavior in the SDOH equation; and as has been illustrated in this report, individual behavior is but one of several determinates of health. On the other hand, the inclusion in the model of “class circumstances” and “living conditions” demonstrates his recognition that while behaviors influence health, they themselves are influenced by distal, upstream dynamics. Although the model relative to the others may be “bare bones,” it is relevant to this work because it addresses specifically the agency vis-à-vis

330 structure tension in the social sciences. It was also the initial, “sensitizing”

conceptualization that served as a springboard for further investigations of SDOH.

Both the Walker and Brown SDOH models are instructive and relevant in the

present study because they address behaviors specific to diabetes treatment and

management. They include the self-care behaviors critical to diabetes control, those

studied at length in this project: medication adherence, blood glucose monitoring,

exercise, and maintaining a healthy diet). On the other hand, both models address

intrapersonal SDOH to only a very limited degree (e.g., socioeconomic, ascribed status,

psychological variables), and they both fail to include higher level influences on health.

That is, they do not consider the effects on health of variables exogenous to those they

include (i.e., interpersonal, institutional, community, and public policy SDOH).

In summary, the WHO and McLeroy models address several SDOH levels while the remaining three speak only to a few. On the other hand, the Brown and Walker models include variables specific to diabetes management. That being said, none of the models addresses specifically physical environmental health influences (e.g., polluted air and water, buried toxic chemicals, climate change, biodiversity loss, et al.)

Study findings and the literature

As would be expected a massive literature explores the social and environmental barriers African Americans encounter in self-managing diabetes and general health.

Table 9 summarizes a sample of studies drawn from this literature. While neither definitive nor exhaustive, the list, consisting of several reviews as well as individual

331 qualitative and quantitative articles, is included here to illustrate the depth and breadth of that literature.

As can be seen, several similar themes emerge across the studies as significant social determinants of health in the African American community, and they reflect the five levels of influences emphasized in this study: racial discrimination; family background and upbringing; religion, the church, spirituality and prayer; beliefs about, attitudes toward, and knowledge of type two diabetes; caregiving role; cost, cost of health care, medications, supplies; access to care; emotional outlook (particularly self- efficacy, will power, empowerment, fatalism, fear, distress, et al.); discrimination; doctor/patient relationship; culture (e.g., food and eating); support from family and peers; “legacy”/family members with type two diabetes; safe neighborhoods in which to exercise, walk; access to education classes; having an exercise partner; comorbidities; working conditions; access to health food; degree of shared decision making with the physician.

Overall, with one glaring exception (discussed below), the findings of the present study generally correspond with those in the literature. African Americans over time and through space encounter similar barriers in self-managing diabetes and other health issues. The differences that do occur among the several studies as well as the present one are centered on whether a particular factor serves as a barrier or as a facilitator at any particular point in time for any particular sample of African Americans. As noted earlier, designations of SDOH as barriers or facilitators are contextual.

332 Most social determinants of health more or less affect all individuals at some

level regardless of race; but many are specific to disadvantaged “socially disen-

franchised” populations (Clochesy et al., 2015). Five factors in particular play a

significant role in the self-management of diabetes in the African American community: racism and discrimination (see, for example, Wagner, Tennen, & Osborn, 2015; Dolezsar,

McGrath, Herzig, & Miller, 2014; Pascoe & Richman, 2009; Paradies, 2006; Moody-

Ayers, Stewart, Covinsky, & Inouye, 2005); economic (Clochesy et al., 2015; Robinson &

Cheng, 2014; Xanthos, Treadwell, and Holden, 2010); religious, spiritual (Sherman, 2015;

Bhattacharya, 2012, 2013; Johnson, Elbert-Avila, & Tulsky, 2005; Polzer & Miles, 2005); caregiving (Seawell, Hurt, & Shirley, 2015; Majeed-Ariss, Jackson, Knapp, & Cheater,

2013; Samuel-Hodge et al., 2000); and cultural factors (referred to in this study as

‘family culture” and “family background”) (Nam, Chesla, Stotts, Kroon, & Janson, 2011;

Eckersley, 2007; Tripp-Reimer et al, 2001; Anderson, Barr, & Edwards, 1996). This

general finding in the literature is reflected in the present study with one exception:

racial discrimination.

Not one respondent mentioned perceived discrimination as a health self- management barrier. The only references to race were either asides meant to be humorous or metaphorical or an acknowledgement of the prevalence of diabetes in the

Black community. These excerpts are included here because they were the only

references to race made during hours of discussion and because they were benign in

nature, in stark contrast to plentiful documentation that perceived discrimination has

333 dire consequences on the health and self-management behaviors of African Americans

(see studies catalogued in Table 9).

“… but see diabetes taught me, ‘You don’t need all that.’ So I went to more bagels because you know, and no offence, I thought bagels was you know a White person’s… ‘Oh well just White people eat bagels for breakfast. We eat bacon and…’ You know what I’m saying?

Child, I ain’t getting in no water. You know Black folks don’t do well in water. I’m sorry.

I asked [the doctor] why do most Black people have it and she said it’s just something that runs in our race … genetic race wise.

[A respondent speaking about a difficult supervisor at work] …I do what I’m supposed to do, and I’m going to take care of me. And like I said to her, ‘Slavery has been abolished many, many years ago, and I need something too’ … I need to take a break, because you know like I don’t per se get a break …

This “silence” in the study’s findings is surprising given the extensive research base documenting the significance of perceived discrimination in both the self- management of diabetes (and health in general) and in African Americans’ access to quality healthcare services. Even a cursory perusal of the literature invites the suggestion that discrimination – concomitant with its economic disadvantages – is the one most life-altering obstacle facing Black Americans in their attempts to achieve and maintain good health (as well as a good life) (see, for example, Dawson et al. 2015;

Wagner, Tennen, Feinn, & Osborn, 2015; Dolezsar et al., 2014; Pascoe & Richman, 2009;

Williams & Mohammed, 2009; Sellers et al., 2009; Paradies, 2006). This lack of mention is all the more significant because voluminous research has documented the negative effects of perceived discrimination on the physical and mental health of African

Americans (see particularly a review by Williams & Mohammed, 2009).

334 This finding necessarily invites the question: Why was discrimination not

mentioned as a barrier by this sample of African Americans? Was it because none was

perceived by the respondents? Was it because they were not asked, specifically, about

the role of discrimination in managing their health? Although the only definitive method

of answering these questions lies in re-interviewing the participants, several factors may

help explain the absence of its mention in this research: (1) the compassionate care of

culturally competent physicians; (2) the safety-net hospital system (sliding-fee scale,

staff, services, and resources); (3) publicly funded health and social welfare programs

(Social Security, Unemployment Insurance, Medicare, Medicaid, VA, and other federally-

funded agencies); (4) the tireless efforts of the social worker at the study clinic to obtain

free medications for indigent patients; and (4) the Clinic itself (neighborhood location,

milieu, mission to serve disadvantaged populations).

A noteworthy finding in several studies (see Bhattacharya, 2012a, 2012b;

Moody-Ayers et al., 2005; Kennedy, Mathis, & Woods, 2007; Liburd & Sniezek, 2007),

including the present one, is the African American community’s general distrust of the

medical care system. Musa et al. (2008, p. 1293) surveyed 1,681 Black and White adults and found that Blacks “had significantly less trust in their own physicians and greater trust in informal health information sources” than did Whites. While the Clinic

respondents were at times “suspicious” of the healthcare system, those feelings did not

extend to their physicians. The differences between this and the Bhattacharya and Musa

studies in this regard could not be more stark.

335 Similarly, the Clochesy (2015) study findings provide a text book case of the differences between this sample’s characterizations of their physicians vis-à-vis the experiences of other disadvantaged populations. As established throughout this paper, the study’s participants, loved, respected, appreciated, and cooperated with their physicians in every aspect of health care. In contrast, the respondents in the Clochesy sample, at worst, could not contain their contempt for physicians they have encountered.

In that study 28 women and 32 men from Northeast Ohio who were identified by the authors as being “members of medically and socially disenfranchised communities” (people self-identifying as “African American, Hispanic/Latino, lesbian/gay/bisexual/transgendered, and/or Russian immigrant”) were asked “what they want from their providers.” Every aspect they “disliked” about their doctors and their access to quality care was diametrically opposite the positive experiences and accounts of the respondents in this study. For every “want” or “dislike” the Clochesy participants expressed, the Clinic sample was more than satisfied. Most importantly, whereas the Clinic patients reveled in the knowledge that their doctors “knew them,”

“took time with them,” and “listened” to them, the Clochesy patients were far less satisfied (if not overtly offended) with the care they received from physicians.

One Clochesy study respondent’s comments are not only colorful, but also serve to showcase the high regard in which the respondents in the present study hold their doctors.

So I’ve been in the military and I’ve been in prison. You know to be honest with you, some doctors, I would rather go see a witch doctor in a tent in the middle of

336 a field to see some of these doctors at [Healthcare Systems X, Y and Z] … In general, I could come in, in a $3,000 tux and step out the back of a 50-foot limo, they still talk to me like I had shit smeared on my face, you know … (p. 189).

Other studies have similarly identified a poor doctor-patient relationship and a doctor’s uncaring bedside manner as constituting barriers to self-managing diabetes

(e.g., Vest et al, 2013; Joseph-Williams, Elwyn, and Edwards, 2013; Peek et al, 2009).

Finally, as noted earlier, designations of SDOH as barriers or facilitators of health self-management vary according to the context in which they are encountered.

Consequently, one might well ask the questions: Why are there any differences between studies, given they all survey African American populations? Why is discrimination missing from the present study? Why are patients’ experiences with control and willpower issues sometimes different? Why are some patients so much more informed than others? Why do some patients see family as supportive and others see family as a stressor? And so forth. This writer argues that one appropriate answer is, “Why not?”

Voluminous research has certainly identified the various ways the Black community’s challenges, needs, and wants (and injustices suffered) as a whole are similar overall and different from those of the White community; but this does not mean the Black population is monolithic, no more so than any other group of people. In this regard, this research comes full circle, back to a statement made earlier in the Introduction to the

Literature Review section which this writer believes provides answers, in part, to these questions:

I did not expect to find a study that totally replicated the one discussed herein. That is, this project is concerned with a specific population of individuals located in specific settings (primary physicians, clinic, medical system, neighborhood, community) at a specific point in time and space. By definition, “social

337 determinants of health” are unique to an individual or a population of individuals similarly positioned with regard to myriad variables involving “physical location” (e.g. quality of housing, public green space, water quality, air quality, neighborhood milieu, proximity of toxic materials, et al.) as well as social and cultural milieus.

Study limitations.

Study limitations were discussed in an earlier section of this Dissertation. Briefly, the field work was conducted at one exemplar clinic in one healthcare system. Had time and funding been available, it would have been interesting to observe encounters and conduct interviews at additional clinic locations in the system, especially those struggling to meet diabetes outcome goals. The study design was cross-sectional; and while not necessarily a limitation, this study design provides only one component of evidence-based medicine. The sample was purposive: Only patients having made follow-up visits were included (in contrast to emergency and new patients); and this author was not involved in making methodological and study design decisions.

Although sample size is small relative to a statistically-based research effort, projecting means and standard deviations to a population was not the impetus of this research. The intent was to understand processes and the lived experiences of diabetes patients. The interest lay in exploring concepts, strategies, dynamics, processes – not

“counting” instances of behaviors or experiences. Consequently, sample size is not viewed as a study limitation. It is the research philosophy of this writer that a sample of

one, for some purposes, is adequate. Any human experience is worthy of study and note

and does not have to “cluster” near the mean to be meaningful (?!). Outliers, in my

worldview, are permissible, even invited.

338 There is also the possibility of bias, given the theoretical perspectives

undergirding this analysis (Marxist, Conflict Theory and Constructivist Grounded

Theory). To counteract potential bias, the transcribed office visits and interviews, the

initial and later-stage coding structures, and analytical memos and jottings are available

for review. Importantly, two members of the original research team for this project

(Bolen et al, 2015) served as members of the Dissertation Committee. Their

participation offered the opportunity to apply “analyst triangulation” (Crabtree, 2006)

to enhance the quality of the analysis.

Study contributions and strengths.

As noted earlier, although increasing numbers of initiatives address diabetes prevention and management, patients and their physicians to a large extent fail to

control the condition adequately (Cebul, 2016; AHRQ, 2014; Nam et al., 2011). And, as

illustrated throughout this document, in the United States significant health disparities

continue to exist between Black (as well as other racial/ethnic populations) and White

Americans. In view of these shortfalls, this study is significant because it illustrates how

doctors and disadvantaged patients, acting in partnership, can surmount systemic social

environmental barriers to achieve reasonable cardiovascular control (i.e., A1c, BP, and

LDL outcome measures).

This study both “adds to” and enhances the literature. The findings of this study

were similar to those of others exploring the barriers African Americans face in self-

managing diabetes. That is, economic factors are largely barriers to and family

relationships and religious beliefs are primarily facilitators of self-care. On the other

339 hand, discrimination was prominently mentioned by Blacks in other studies but was

absent in this one. Similarly, Blacks in other studies have a problematic relationship with

doctors and the health system in general; in this study, doctors and the “system” (a

safety-net hospital) were largely responsible for the patients’ self-management success.

This study enhances the literature in several ways. First, SDOH barriers were

“discovered” in the context of a routine, follow-up office visit, a “natural setting”:

“Naturalistic observation … involves looking at a behavior as it occurs in its natural setting with no attempts at intervention on the part of the researcher” (Cherry, 2016).

Neither the doctor nor the patient (nor for that matter, the researcher) at the time was aware of the extent to which discussions of social environmental factors would dominate the office visit.

Because SDOH issues emerged from the visits in a serendipitous fashion and were, in a sense, elicited on an “unaided” basis, the findings presented here offer an

“unbiased” and “true to real life” picture of how patients and physicians define, describe, and experience the effects of SDOH on the treatment and self-management of diabetes. The respondents did not “list” social environmental barriers. They “arose” organically during the visit and were largely unrecognized as such by the sample who ascribed all responsibility for their health to themselves. As discussed earlier, this is itself a significant study finding. Individuals adopt the ethos of the hegemonic perspective in the U.S. that individuals alone are responsible for their health and behaviors and that they are to “blame” for any lapses in health self-management.

340 A strength of this study, then, is its exploration of self-management barriers in

context: if, how, when, where, and why specific factors negatively affect the patients’

ability to maintain healthy behaviors. The focus of this study is on exploring complex

processes and strategies used by both the patients and the physicians to manage

diabetes, going well beyond merely a listing of barriers.

Secondly, because the office visits were followed-up by personal interviews, it

was possible to discuss with the patients the issues they had raised during the visit with

the doctor. Again, this offered not only the opportunity to record processes and

strategies, but also to consider a patient’s “publicly” (office visit) vs. “privately”

(personal interview) expressed health beliefs, attitudes, and behaviors. The personal

interviews allowed an opportunity to follow-up with the patients to explore in greater

depth the day-to-day strategies they used to manage their health, specifically their

dietary, exercise, medication, and blood sugar monitoring diabetes management

regimen. Previous studies were limited in their ability to assess care in the context of an

office visit, often reporting only the length of time of the visit, restricting the variables

considered only to those with billable codes, and enumerating subjects but ignoring

processes and context (Bolen et al. 2015, Parchman et al. 2007, Beasley et al. 2004).

Thirdly, this study adds to the literature because it was conducted in the context

of a safety-net hospital system specifically. Accordingly, it was possible to identify and

explore barriers that continue to exist despite the receipt of public assistance. It also

underscored the importance of public policy in improving access to and quality of health care for all Americans. A search of the Web of Science database using the search terms

341 applicable to this study (i.e., diabetes, self-management, social determinants of health, barriers, African American or Black, safety-net hospital, office visit, and qualitative, for the years 2010 through 2016) resulted in no citations. Although there have been studies using participants enlisted from safety net systems, none has included all the variables comprising the design of this study.

Finally, this study was novel because it explored diabetes self-management in the context of an on-going, often long-term doctor – patient relationship. Study results verify the importance of this dynamic bond in a patient’s attainment of positive health outcomes.

Implications and Recommendations

Study findings present implications for several audiences: patients, primary care physicians serving socioeconomically disadvantaged populations, safety-net hospital administrators, health policy makers, public and private funding organizations, medical educators, and medical sociologists. The interpretations below reflect this writer’s ontological, axiological, and epistemological inclinations and the results of the study; they do not benefit from an extensive review of the literature in each domain.

Patient-Care

Study results demonstrate that economically and socially disadvantaged patients can successfully manage diabetes not only with behavior change (e.g., diet, exercise, medication, et al.) but also with the requisite resources of a culturally competent physician, a safety-net hospital system, and public financial assistance. It is noteworthy that the patients’ behavioral changes were largely attributable to the long-standing,

342 trusting relationships they shared with their physicians. Wider dissemination of the findings to relevant decision makers and their implementation may ultimately benefit patient care in general.

Physicians Working with Disadvantaged Patients

As maintained throughout this report, with corroborating evidence, the physician, her/his mission, goals, values, commitments, knowledge, and “bedside manner, are pivotal if not the most important resource an indigent or otherwise disadvantaged patient has in her/his efforts to achieve and maintain health and diabetes control in the face of often intractable social environmental barriers. This study presents the bedside manner and strategies culturally competent and caring physicians employ in partnering with their patients to craft health management plans that are

“doable” and “make sense” to the patients. At the same time the physicians in this study were attuned to diabetes and other health guidelines, they never veered from consideration of the full gamut of a patient’s total well-being and her/his life experiences and struggles.

The doctors in this study understand their patients as whole persons; they know about their families, about their jobs or lack thereof, about their interests and their struggles with managing different aspects of the diabetes regimen, be it diet, exercise, medication adherence, or monitoring blood sugar. The doctors were masterful in their management of the office visit and managed to “cover all the bases” while at all times listening to and addressing the concerns of the patient, whatever they be. They reviewed the gamut of diabetes-management behaviors, from diet through blood sugar

343 monitoring. They addressed all manner of medication review and reconciliation. They

addressed the patients’ various other comorbidities, acute concerns, cancer and other

health screening, and coordination of care issues. And they listened intently, genuinely

as patients described the social environmental barriers they were facing “in the real

world.”

Sharing the results of this study with primary care physicians who seek to

provide culturally competent care would further enhance not only their professional

skills but also, consequently, patient behaviors and health outcomes: Here is an

opportunity for them to “sit in” on exemplary office visits between compassionate physicians and committed patients: “This is how it is done ….”

Safety-net hospital administrators

Study findings suggest several ways safety-net hospital administrators could further enhance patient care and outcomes.

It is noteworthy that many of the respondents had not initially known the status of the facility as a safety-net hospital, its sliding-rate scale, and its other benefits

(pharmacy, social work staff, financial counselors, et al.). Many had stumbled upon the knowledge via the hospitalization or experiences of a friend or relative. However, by the time of this study, they had established on-going, productive relationships with their physicians and other staff; and all were knowledgeable not only about managing diabetes in the face of social and economic difficulties but also about “the system”; i.e., the Clinic and its policies and procedures, the staff, the services offered, how to advocate for financial assistance and so forth.

344 Two suggestions follow from these findings: First, more widely disseminate information about the hospital’s safety-net features, especially for citizens in underserved, disadvantaged neighborhoods. Second, consider including patients similarly situated (knowledgeable, savvy, resourceful, strong-willed, committed, and in control of their diabetes) in peer-led or peer-support diabetes intervention efforts

(Tang, Ayala, Cherrington, & Rana, 2011). While it appears that most peer-involved interventions feature volunteers, it would seem a moral imperative to include underprivileged patients as paid staff on an intervention team.

Other considerations include: Increasing allotted office visit time for new patients from 15/20 to 40 minutes, particularly for complex cases including several comorbidities; to an extent greater than is currently done, querying physicians and staff at each Clinic to describe “best practices” at their site and disseminate “what works” to colleagues and administrators (Cebul, 2016); streamlining the processes through which safety-net patients are required to navigate to receive the benefits for which they are eligible; and enacting procedures to train front-desk staff at the Clinics to be culturally sensitive and respectful of all patients, regardless of their station in life.

Because the “bottom line” is the “bottom line” and it is assumed that any increases in resources require corresponding increases in funding, it is self-evident that the hospital system would benefit from increased public subsidies. Such subsidies are not on the horizon in the short term. Although promising future “bricks and mortar” funding would be made available for a new hospital facility, county officials recently

345 announced a 20% cut in funding for the hospital’s patient care services (Ross, January

28, 2016; Farkas, October 13, 2015; Farkas, October 29, 2015).

Medical Educators

Study findings suggest five implications for medical educators: (1) Increase the

ranks of medical students preparing for roles as primary care physicians; (2) Include in

the curriculum mentored experiences in international health (or in the U. S.) to foster

altruistic caring (Smith & Weaver, 2006); (3) Emphasize care of the “whole person,”

specifically the role of social and physical environmental factors in determining health

outcomes; (4) Enhance training for integrative care (managing multimorbidities) as well

as disease specific guidelines; (5) Highlight the therapeutic importance of a sustained,

strong, meaningful, and caring relationship with patients (Bolen et al., 2015; Epstein,

Fiscella, Lesser, & Stange, 2010; Beach & Inui, 2006); and (6) Encourage students to

“reflect and discover their own ethos of healing” (Ventres, 2015).

Primary care physicians (PCP), including general practitioners, family doctors,

and internists, provide approximately 90% of diabetes care in the United States

(Davidson, 2010). Moreover, PCPs play a unique and increasing role in caring for

complex patients with multimorbidities, and they consequently serve as a “hub” in coordinating care often among several specialists (Loeb, Binswanger, Candrian, &

Bayliss, 2015; Stange, 2012;). Considering the centrality of PCPs in treating complex patient with multimorbidities, the predictions of a shortage of 12,500 to 31,100 PCPs by

2025 require action (American Academy of Family Physicians, 2015). There is also

346 presently a 12 to 15 percent shortage of the endocrinologists needed to manage patients with more advanced cases of diabetes (Sakimura, 2014).

The need for increased numbers of PCPs is heightened further by the growing population of older adults in the U. S. The first of the generation born between 1946 and 1964 is reaching what historically has been “retirement age” (65) at a rate of 10,000 a day and will be for the next 14 years (Pew Research Center, 2010).

Although the numbers of U. S. adults diagnosed with diabetes dropped from 1.7 million cases in 2009 to 1.4 million in 2014, stakeholders caution this is not cause for celebration. Challenges remain. Blacks and Hispanics have not seen significant declines, and they remain about twice as likely to be diagnosed as White Americans. Moreover,

30 million Americans currently have diabetes; and the U. S. has the highest rates of diabetes among developed countries, ranking 60th worldwide (Preidt, 2015; CDC,

Diabetes Public Health Resource, 2014). Also increasing the need for PCPs is the growing numbers of Americans with multimorbidities (“the co-occurrence of two or more medical or psychiatric conditions”): More than one in four Americans have at least two chronic conditions (Whitson & Boyd, January, 2016, par. 3). In developed nations, about one in four adults have at least two chronic conditions, and more than half of older adults have three or more chronic conditions (Whitson & Boyd, 2016).

Health policy makers and funding organizations

Several of the implications for hospital administers and medical educators noted above are relevant to policy makers in general, public and private. Additional considerations are discussed below.

347 Presently attention is narrowly focused on single diseases and disease-specific

guidelines. It can be argued, given the prevalence of multimorbidities and the growing influence of social and physical environmental determinants of health, that addressing a single chronic disease with inflexible adherence to specific guidelines pertaining only to that one disease falls far short of treating the whole person (Stange, 2009a; 2009b;

2009c). In treating multimorbid patients PCPs typically respond to conflicts in treatment decisions “by making compromises between patient-centered and evidence-based care”

(Sinnot, Hugh, Boyce, & Bradley, 2015, p. 184). Consequently, several scholars are

speaking to the need to emphasize integrative care that considers the complexity of the

cases – multimorbidities - that primary care physicians regularly see in their practices

(Bolen et al., 2015; Bayliss et al., 2014; Fortin, Lapointe, Hudon, & Vanasse, 2009; Bayliss

et al, 2007).

Stakeholders are also increasingly attuned to the influence of social

determinants on health and attempts are being made to address them in a clinical

setting (Bolen et al., 2015; Cebul, 2016), but more work needs to be done. Observers

have noted that there is a “disconnect” between improvements in processes of care and

improvements in outcomes, with the latter lagging in comparison (Cebul, 2016; Ferrer &

Carrasco, 2010; Kuo et al., 2005). Growing numbers of stakeholders posit that outcomes

are lagging because the social components of health have not been adequately

addressed. In their most recent report, Better Health Partnership (a consortium of

healthcare stakeholders in Northeast Ohio seeking to share best practices, provide

accountability, and enhance transparency) notes that while process and quality of care

348 measures are improving, outcome improvement is slower, uneven, and more

problematic; i.e. minorities continue to face disparities in diabetes outcomes (Cebul,

2016; Suttell, 2015). This organization, too, argues for a consideration of the social

dimensions of health, stating:

Rates of good outcomes are lower for patients who are racial and ethnic minorities and have lower income, less education, or no health insurance. Year after year, even as our reports document improvement, we are reminded that health care plays a relatively small part in the overall health of populations. Most experts agree that only 20% of health is linked to doctors’ office-based care, while 80% is linked to environment, “upstream” policies, and social and behavioral factors. So while more patients with diabetes meet outcomes standards indicating good control of their condition, many do not (Cebul, 2016, p. 3).

Ferrer and Carrasco (2010) propose a clinic-based “capability framework” in

which the physician assesses a patient’s “capability” defined as the “real opportunity to

achieve a desired lifestyle” (p. 454). They recommend that physicians during the medical

encounter directly ask patients about the social barriers they face in attempting to

adhere to diet, exercise, medication and other health recommendations (e.g. Can you

afford to buy fresh fruits and vegetables? Are fresh fruits and vegetables for sale where

you usually shop for food? Do you have other duties [such as caring for a parent?] that

make it difficult to be physically active? Do you have transportation difficulties? and so

forth). Ideally, the physician would then “connect” the patient with community

resources available to help them surmount those barriers.

In the present study these exchanges occurred between the patients and doctors organically; they knew each other so well that discussions of family, work, financial problems, et al. naturally occurred without the necessity of a formal checklist.

349 That being said, however, a systematic measure of social environmental concerns as part of the office visit record is a positive development in recognizing their importance in attaining well-being.

Recently another initiative has proposed that social determinants of health be integrated into healthcare surveillance mechanisms (Institute of Medicine, 2014). An advisory committee of the Institute of Medicine was charged with the task of identifying domains and measures of social determinants of health that would be meaningful additions to electronic medical records. They issued their Phase 1 report in 2014; and while their recommendations represent an improvement (something is better than nothing), it “reviewed” but “did not select” several variables crucial to an individual patient’s health. While their list includes race, education, employment, et al. (typically termed sociodemographic variables) as well as psychological and a few behavioral domains (diet, exercise, tobacco and alcohol use), it prominently excludes neighborhood contextual characteristics (e.g., air pollution, water quality, other hazardous exposures, food and transportation options, open spaces, et al.) and other influential variables such as sexual practices, exposure to crime, exposure to violence, exposure to firearms, community and cultural norms, and social support et al. Again, the question presents itself: Are these factors excluded to a large extent simply because they are difficult to measure?

Study results also underscore the need for diabetes “performance” measures to address not only social determinants of health (as discussed above), but also a patient’s experiences with self-management and treatment. Currently, the patient is largely

350 absent from the measurement equation (Bolen et al., 2015; Glasgow, Peeples, &

Skovlund, 2008). “Success” in diabetes treatment is measured in “productivity” terms: numbers and money. “Throughput” is incentivized; caring is disincentivized. Present measurements place “financial disincentives against caring for complex patients” (Bolen et al., 2015, p. 9; Hong et al., 2010).

The compassion and quality of care the physicians in this study devoted to their patients is testament to the power of the doctor/patient relationship to influence patient beliefs, attitudes, behaviors, and outcomes. Other studies have spoken to or demonstrated the power of this relationship, referred by some as “patient-centered health care” (Epstein, Fiscella, Lesser, & Stange, 2010, p. 1489; Beach & Inui, 2006;

Epstein et al, 2010). Patients in primary care relationships that are characterized as trusting and in which the physician knows the patient as a “whole person” are three times more like than those not enjoying such a relationship to follow doctors’ recommendations (Martin, Williams, Haskard, & DiMatteo, 2005; Safran et al., 1998).

Zolnierek & DiMatteo (2009), in a meta-analysis of 127 studies, concluded that physician-patient communication is highly correlated with a patient’s adherence to a physician’s recommendations.

How do you begin to measure the quality of the doctor/patient relationship in health outcomes? How do you capture the almost magical connections that a committed caring doctor and a committed caring patient establish and maintain over time? it would seem that a major difficulty is an artifact of measurement. Glasgow et al.

(2008), in their call to include the patient in diabetes performance measures (e.g.,

351 behaviors, self-management goals, quality of life, et al.), note that “what gets measured, gets done.” One wonders if that is one of the reasons the doctor/patient relationship

(i.e., patient-centered care) is not included the performance equation: It’s difficult to measure. On the other hand, considering the current emphasis on the financial aspects of health care, if enhancing the relationship (e.g., increasing visit times to as much as

30+ minutes) costs more money, chances are it won’t be done regardless of the evidence.

Medical sociology

It can be argued that this study demonstrates a successful intersection of

“sociology in medicine” and “sociology of medicine.” Sociologists “in medicine” work as technicians and investigators who answer questions on behalf of sponsors and focus on information and application. In contrast, sociologists “of medicine” typically address issues such as inequalities, social stratification, social values, and power dynamics as they relate to health and health care (Mechanic, 1994). In the present study, the physician investigators interpreted study findings largely through a biophysical, medical lens, whereas this author did so through a social contextual lens and was particularly attuned to patients’ comments relating their health beliefs, attitudes, and behaviors to social environmental factors. The richness and depth of the findings obtained through this collaboration suggest the importance of multidisciplinary work in the health sciences.

352 On a personal and ending note:

As a sociologist-in-training it was exhilarating and enriching to “sit in on” the office visits of compassionate, culturally competent primary care physicians and their committed, resilient, and resourceful patients. And they were (are) all of those things.

The depth and intimacy of the relationships were palpable; and it was clear that the physicians know and care for their patients as “whole persons.” The physicians are correspondingly revered by their patients. Despite this closeness, however, the patients understood (as they discussed during the follow-up interviews) that their doctors were at the same time “no nonsense” and expected them to participate fully in managing their diabetes. The doctors and patients acted in partnership and collaborated to craft doable self-management treatments and behaviors. This winning partnership occurred in the context of patients struggling to manage their health in the face of a variety of social environmental barriers. Although slight in design and generalizability, it is hoped that this study demonstrates how committed doctors and patients, with the requisite resources, can successfully manage diabetes.

From the moment I began reviewing the literature for this paper, I was astounded at the breadth, depth, and longevity of the evidence that social and physical environmental factors significantly affect health and health behaviors. I became increasingly disheartened (and outraged) that despite centuries of proof of the powerful influence of SDOH, oil and gas wells continue to be fracked, community water supplies continue to be poisoned (and then ignored), food continues to be infused with obesogens and other carcinogenic agents, food desserts continue to exist (and be

353 tolerated), poor communities continue to deal with lead-based paint and subsequent

childhood health problems, hormones and antibiotics continue to be fed to cattle, green

spaces continue to be destroyed, government funding for health and social service

programs continue to be slashed, the air continues to be fouled (legally), medication

costs continue to be out of reach of millions Americans. And the list goes on. An ethos

in this country that insists individuals can “rise above” adversity, pull themselves up “by

their own bootstraps,” and “live the American” dream” if they try hard enough is a

moral and logical perversity. The implied and explicitly stated corollary that “it’s your

own fault if you are poor” illustrates that “blaming the victim” is not only alive and well,

but flourishing in the United States.

On the other hand, (and to be fair), it is true that growing numbers of health stakeholders recognize the powerful influence of upstream SDOH on downstream health and behaviors. Efforts to address SDOH have increased, especially since the

WHO’s 2008 report on worldwide health disparities and inequities. For example, and as noted earlier, the Institute of Medicine has proposed that socioeconomic variables be included in electronic medical records; and physicians are calling for a systematic method of recording a patient’s social environmental status during an office visit

(Institute of Medicine, 2014; Ferrer & Carrasco, 2010). At the public policy level, laws regulating seat belt use, smoking, highway speed limits, the emission of industrial pollutants, and the sale of sugar-sweetened beverages (SSBs) especially to children, for example, are testaments to the power of public policy to positively affect health.

354 Similarly, interest in funding community-based health interventions has increased. For example, the CDC’s REACH program (The Racial and Ethnic Approaches to Community Health) is a national program aimed at reducing racial and ethnic health disparities. It awards funds to state and local health departments and other health and social service organizations to establish community-based health promotion programs and interventions serving minority populations. The Accountable Health Communities

Model of the Centers for Medicare and Medicaid Services addresses health-related social needs by linking patients with resources available in the community. The Robert

Wood Johnson Foundations funds a wide array of health promotion programs (25

“topics” listed on its website) from childhood obesity, to tobacco control, to violence and trauma. Other private foundations fund similar community health promotion including The Kresge Foundation, The Henry J. Kaiser Family Foundation, and the

American Medical Association Foundation, among numerous others.

While the Affordable Care Act (ACA) became law on March 23, 2010, it is not expected to be fully implemented until 2018 (McDonough, 2016). In addition to increasing public access to health care, the ACA includes provisions that link health care delivery with community resources, focus on prevention and primary care, and address broader social determinants of health by funding national, state, and local initiatives.

While the ACA has increased access to medical care for millions of Americans, its long-term effectiveness in reducing disparities and successfully addressing SDOH remains to seen. Even when fully implemented, 30 to 36 million Americans will remain uninsured; and for tens of millions who do have coverage, it is too limited to ensure

355 protection against a major illness (Himmelstein, 2013). Some observers already note

shortcomings, characterizing the plan as “simplistic,” especially when compared with

the complexity of the integrated-care model that the ACA mandates for healthcare reform (Leong & Roberts, 2013). These same authors point out that the grants are

“relatively small” and that they are not part of a “larger, integrated system” that would be necessary to adequately address the undesirable effects of SDOH (p. 21). More forcefully, John McDonough, Professor of Public Health Policy at Harvard University observed that despite the ACA reforms, “the U.S. will still have the most inefficient, wasteful, and unfair health insurance system of any advanced nation” (McDonough,

2016, par. 2). Morever, although the ACA arguably benefits some Americans (Quealy &

Sanger-Katz, 2014), it’s primary beneficiaries are insurance companies.

… if you go back to the early 2010 passage of Obama Care [sic], you will find that Obama’s sellout of the public interest has allowed the public companies the ability to raise their premiums, especially on small business, dramatically multiply their profits and send the value of their common stocks up by 200%- 300%. This is bloody scandalous … (Lenzer, October 1, 2013, par. 1).

The Affordable Care Act is a pro-insurance-industry plan implemented by a president who knew in his heart that a single-payer, Medicare-for-all model was the true way to go … By 2017, we will be funneling over $100 billion annually to private insurance companies (Greenberg quoting Michael Moore, 2014, par. 2).

Anecdotal evidence suggests that while increasing access to healthcare, the ACA may fall short of meeting the healthcare needs of many if not most of its recipients. A recent New York Times article quoted purchasers of insurance through the ACA who could not afford the deductibles: “The deductible, $3,000 a year, makes it impossible to actually go to the doctor … we have insurance, but can’t afford to use it.”; “We could

356 not afford the deductible … basically I was paying for insurance I could not afford to use” (Pear, 2015, para. 4, 5).

The above programs (and legions of others) are, of course, cause for optimism if not celebration. In many cases, funding is for demonstration, temporary initiatives; it is limited; and it is available to a relatively small number of communities and organizations. Consequently, many observers (I) look to the federal government

(ourselves) to fund nationally available programs that promote health and well-being for the common good, similar to Medicare (“Medicare for All”), Social Security, and

Medicaid. And that is where the optimism fades.

In the fall of 2015 the President and Congress reached an agreement, once again slashing health and social welfare programs to fund war coffers. According to an

October 26, 2015, article in the New York Times, a “discussion draft” was posted by

House Republicans to the effect that:

The agreement [between the President and Republican congressional leaders] would raise spending by $80 billion over two years, not including a $32 billion increase included in an emergency war fund. Those increases would be offset by cuts in spending on Medicare and Social Security disability benefits …. The Medicare savings would come from cuts in payments to doctors and other health care providers.

Closer to home, in the fall of 2015 the administrators of the study’s safety-net hospital system agreed to accept a 20% funding cut from the County in return for promises to provide monies specifically for a new hospital facility in the future. Another recent headline, amusing and hideous at the same time, declared: “White House looks to make pre-kindergarten classes available to all children, but critics question the cost and lasting impact” (O’Donnell, January 31, 2016). This, despite research confirming that

357 socioeconomic disparities adversely affect structures of the brain responsible for the

language, reading, executive function, and spatial skills development of children and

adolescents (Noble, et al., 2015). Only in one’s dreams would one see a headline asserting, “White House looks to increase funding for bombing [country du jour], but critics question the cost and lasting impact.”

Certainly the countless individuals around the world working tirelessly to improve the health and well-being of all people deserve to be recognized, celebrated, honored, and supported by any means possible. The above initiatives, too, deserve widespread public approval and support. Despite this positive movement “in the right direction,” however, Vicente Navarro’s critique of the WHO’s report still resounds in my head and in my heart:

… this is where the report falls short. It is not inequalities that kill, but those who benefit from the inequalities that kill (emphasis added). The Commission’s studious avoidance of the category of power (class power, as well as gender, race, and national power) and how power is produced and reproduced in political institutions is the greatest weakness of the report. It reproduces a widely held practice in international agencies that speaks of policies without touching on politics. It does emphasize, in generic terms, the need to redistribute resources, but it is silent on the topic of whose resources, and how and through what instruments. It is profoundly apolitical, and therein lies the weakness of the report (Navarro, V., 2009b, p. 440).

Other scholars involved directly in the WHO project have also powerfully commented:

(The) toxic combination of bad policies, economics, and politics is, in large measure responsible for the fact that a majority of people in the world do not enjoy the good health that is biologically possible … social injustice is killing people on a grand scale (emphasis added) (WHO, Press Release, August 28, 2008, par. 3).

358 Health inequity really is a matter of life and death (WHO, Press Release, August 28, 2008, Chan, par. 4).

Until social injustice ceases to “kill people on a grand scale,” patients and doctors, at a private, micro, intimate level, will have to continue to rely on themselves, their support systems, and available public assistance to manage diabetes and other health maladies - “in spite of the system.”

359 APPENDIX

Patient Interview

Physician Interview

Observation Checklist

Patient Informed Consent

Physician Informed Consent

360 Patient Interview 6/14/2009

Location ______Patient ID ______Provider ID______

Date of appointment ______Date of interview ______

Time begin ______Time end ______Folder # Track # Sex ______Age ______Race AA W H A Other

Diabetic Yes/No HBP Yes/No High Cholesterol Yes/No

1. How long have you been coming to this Clinic?

2. Is there anything about this Clinic that you particularly like? Probe: What about:

The front desk Nursing Nutrition Radiology Financial counseling Dental Physical surroundings Other

3. Is there anything about this Clinic that you dislike or would like to see changed? Probe: What about:

The front desk Nursing Nutrition Radiology Financial counseling Dental Physical surroundings Other

4. Does your doctor use the computer while s/he speaks with you? What do you think about this? Do you think the doctor’s using the computer has any effect – good or bad - on your health care? Please explain.

5. Is the physician you are seeing today/you saw your regular Primary Care doctor?

361

6. How long have you been seeing her/him?

7. How many different Primary Care physicians have you seen at this Clinic? Why more than one?

8. What health issues concern you most? Why those particular issues? Probe: What concerns you most about diabetes, HBP, cholesterol, cancer (breast, colorectal, and cervical) screening?

9. On a day to day basis, what is it like having diabetes/HBP/high cholesterol? Probe: How does having diabetes/HBP/high cholesterol condition affect your day-to-day life?

10. What things do you find helpful in managing diabetes/HBP/cholesterol? How are they helpful?

11. What things make it difficult for you to manage diabetes/HBP/cholesterol? How are they difficult?

12. For the above THREE questions, PROBE to be sure following issues are addressed:

How often blood sugar checked and reason for schedule How often BP checked and where How often cholesterol checked and where Medications and schedule Are medications/insulin ever missed, which ones, how often, and why Do you ever check your feet? How often? What do you look for? Diet Exercise Spouse, family, friends Primary care provider Other physicians The Clinic and its services (nutrition, ophthalmology, podiatry, other) Counselors, psychologists, etc. Religion or spiritual life Education materials Health insurance status Cost of care, medications Self-discipline Resources or liabilities of the neighborhood

13. Do other people, events, or circumstances in your life ever take priority over your own health conditions? Please explain.

362

14. What more do you think YOU can do to manage your diabetes/high blood pressure/high cholesterol/other chronic condition?

15. In general, what do you think are your responsibilities and what do you think are your doctor’s responsibilities in managing your

Overall health Emotional health Diabetes HBP Cholesterol Cancer (breast, colorectal, cervical) screening?

16. Does your primary care doctor respond to all of your concerns?

17. Are there any issues - health or emotions or general life - you would want to discuss with your doctor that you haven’t yet brought up? Is yes, what issues and why not?

18. Did you do anything else in the Clinic on the day of your appointment? Probe: For example, did the nurse draw blood, did you get a shot, did you have x-rays, did you see a dentist, did you speak with a financial counselor or social worker, etc.

19. Do you have any thoughts, comments, feelings as a result of participating in this interview?

363 Provider Interview Folder # Provider ID______Site: ______Track #

Time begin ______Time end ______Date ______

1. How long have you been practicing medicine?

2. How long have you worked in the clinic?

3. Why did you decide to work for MetroHealth? For this particular clinic? (I added this because of Corinna’s comments her job allowing her to spend time with her children.)

4. How would you describe a typical day in the clinic?

5. Do you ever work on patient care during off, non-paid hours?

If yes, why? How often? What do you do? Where? Do you stay at the clinic after hours or work at home?

6. How do you prepare for patient visits?

7. What systems are in place here at the clinic that make it easier for you to meet your patients’ health care needs? Ask specifically if not mentioned:

Physical environment People/personnel Computer – EPIC Health Maintenance tab Best Practices tab Anything specific for diabetes? Anything specific for colorectal, breast or cervical cancer screening?

8. In general, are there any systems in place here at the clinic that make it more difficult for you to meet your patients’ health care needs? Please explain.

9. What could be done to improve the overall quality of health care delivered by this Clinic?

Ask specifically if not mentioned earlier:

364 Anything specific for diabetes? Anything specific for colorectal, breast or cervical cancer screening?

10. How do you manage a visit when a patient has multiple health care issues? How do you prioritize? How do you decide what to address, what not to address on a particular visit?

11. What do you think of the current diabetes care guidelines

Specifically re: LDL A1C Ophthalmology BP Urine microalbumin Neuropathy/feet

12. How do you decide – what is the process you use - to intensify a diabetic patient’s medication for:

Diabetes HBP Cholesterol What factors make intensification decision easy to make? What factors make the intensification decision problematic?

13. When – under what circumstances - do you discuss cancer screenings for your patients, specifically,

Cervical? Colorectal? Breast?

14. What do you think of the current cancer screening guidelines for

Cervical cancer Breast cancer Colorectal cancer

15. How do you feel about your work? Probe: Do you enjoy what you are doing? Why/why not?

365 Observation Checklist

Be sure “input switch” is set to microphone – Press Menu Key – Select folder using FF or FR button – Press Play/Enter button – Press Play/Enter button while pressing and holding the Record button (Recording starts immediately)

Sex Provider ID Pt. ID Race (Circle) Site: Date: (Circle) ______AA W H A ______M ______Other F

Time Time Time IN with Time OUT with Diabetic appt. patient provider provider (Circle) FOLDER TRACK scheduled checked ______Yes # # ______In No ______

Interview No. of pts. No. of pts. Routine or urgent Is doctor the No. of

checked waiting in visit (ask provider) normal primary exam Date: into EPR exam (circle) care provider for rooms ______and rooms this patient? provider

waiting when Routine (Circle) has this Time: when pt. provider Urgent day: ______brought enters Yes No

back to room Did provider do ______Place: exam w/patient monofilament ______room ______test?

______Yes No __

Time: Tel. No. ______

1. Problems discussed (list in order of how they arise, put D if doc brought up, put P if patient brought it up. This should include biological problems, along with psychosocial such as adherence, financial problems, and prevention. a. ______b. ______

c. ______

d. ______

e. ______

f. ______

366 g. ______

h. ______

i. ______

j. ______

k. ______

l. ______

m. ______

n. ______

o. ______

p. ______

q. ______

r. ______

s. ______

t. ______

u. ______

v. ______

w. ______

x. ______

y. ______

z. ______

aa. ______

bb. ______

cc. ______

dd. ______

ee. ______

ff. ______

367 gg. ______

2. Describe any nonverbal cues (eye contact, sighing, body position, touch, facial expression, movement, etc.…) by PROVIDER to indicate interest or lack of interest in a particular problem (focus more on issues related to diabetes care or cancer screening): ______

3. Describe any nonverbal cues by PATIENT to indicate interest or lack of interest in a particular problem (focus more on issues related to diabetes care or cancer screening): ______

4 Strategies for chronic disease management or prevention witnessed (i.e. flowsheet used, how health IT used such as health maintenance screen viewed or best practices screen used). Please describe what was witnessed if anything and list none if nothing noticed. ______

5. Describe room setup (i.e. where patient sits in relation to provider and any other environmental issues which contribute or worsen patient-provider communication) ______

6. Other comments: ______

368 Title: The essence of primary care

Introduction You are being asked to participate in a research study to better understand primary care at MetroHealth. The investigator is interested in what is currently happening during health care visits between patients, providers, and clinic staff. We hope to use this information to help improve health care for patients in the future. Participation in this study is voluntary. There is no change in your medical care if you are or are not involved in the study. Your involvement will include having someone watch the visit between you and your doctor. We will also schedule a one hour interview at your convenience.

Procedures The investigator will watch and audiotape your visit with your doctor, nurses, and other clinic staff. You may ask the observer to leave the room at any point during the visit. You may also ask the audiotape to be stopped at any point during the visit. Your one hour interview will also be audio taped. Additionally, the investigator will collect your medical record number to review your chart to determine what care you have received today and in the past. This is considered “protected health information” or PHI. The protected health information (PHI) and your medical record number will be destroyed six years after the end of the study.

Possible risks: Since Private Health Information is collected as part of this study, a minimal risk of breach of confidentiality exists.

Possible benefits: There is no direct benefit to you from participating in this study.

Options: This is a research study. You may decide not to participate.

Confidentiality: If information from this research project is published in a journal or presented at a conference, your identity will not be revealed. All collected information will remain confidential.

Costs: There is no cost to you or your insurance company for participation in this study.

Compensation: You will be compensated for participation in this study with a Target gift certificate of 15 dollars. No compensation for treatment is available if injury occurs.

369 What will happen to audio records upon completion of the study?

We may publish written phrases from audio recordings of you. No personal identifying information about you will be included in the presentation. All audiotapes will be stored in a locked box in a locked room. All audiotapes will be destroyed 10 years after the study ends.

HIPAA: As part of this study, we are collecting Private Health Information (PHI) such as: your medical record number, age, race, sex, address and telephone number. This information is being collected to help us understand if there are differences by age, race, and sex. All information will be kept in a password protected computer in a locked office. Only Dr. Bolen and the research assistant Paulette Sage will have access to these files. The following individuals, departments or agencies will have access to your PHI, i.e. IRB, FDA or DHHS for the purpose of reviewing patient protection. The investigator will have access to your PHI collected until 6 years after the study ends. At that time, the PHI will be destroyed. The study file will be kept for ten years after study completion, at which time it too will be destroyed. You will have access to the PHI that is related to this study. You have the right to withdraw your permission/authorization for us to access your PHI at any time. No new PHI about you will be collected for study purposes.

If you have any questions or concerns regarding this research project, please contact Dr. Bolen at (216) 778-5359.

If you have any questions or concerns regarding your rights as a research subject, call the MetroHealth Institutional Review Board at (216)778-2077.

PATIENT/SUBJECT ACKNOWLEDGEMENT:

The procedures, purposes, known discomforts and risks, possible benefits to me and to others, and the availability of alternative procedures regarding this research study have been explained to me. I have read this consent form or it has been to me, and I have been given the opportunity to ask questions or request clarifications for anything I do not understand. I voluntarily agree to participate in this study. I have been given a copy of this consent form.

Patient/Subject Signature Date

Signature of Person Obtaining Authorization Date (This must be an individual named in the protocol)

370 Title: The Essence of Primary Care

Introduction You are being asked to participate in a research study to better understand current primary care practice within the MetroHealth System. The investigator is interested in what is currently happening during health care visits between patients and their primary care providers. We hope to use this information to help improve the health care system. Participation in this study is voluntary. There is no effect on your employment whether or not you participate. Your involvement will include having someone watch and audiotape several visits (about 5-10 visits total) between you and your patients for 2 to 4 days over a one month period.

Procedures The investigator will watch about 3 to 5 patient visits a day for 2 to 4 days. These visits will also be audio taped. If you notice that the patient is getting anxious or the quality of care seems affected, you may ask the researcher to leave the room at any time during the visit. You may also stop the audiotape at any time during the visit for similar reasons. Your name will be collected and assigned a random 10 digit number for analytic and confidentiality purposes.

Possible risks: Since your name is collected as part of this study, a minimal risk of breach of confidentiality exists. However, we plan to use a random 10 digit number that will represent your name so that all data will be de-identified. The master key will be in a locked drawer in a locked office only accessible to Dr. Bolen.

Possible benefits: There is no direct benefit to you from participating in this study. However, the investigator will share results with you because they may be of interest and possibly benefit you in your care of your patients in the future.

Options: This is a research study. You may decide not to participate.

Costs: There is no cost to you or your insurance company for participation in this study.

Compensation: You will be compensated for participation in this study with a Target gift certificate of 50 dollars. No compensation for treatment is available if injury occurs.

371 What will happen to audio records upon completion of the study? We may publish written phrases from audio recordings of you. No personal identifying information about you will be included in the presentation.

All audiotapes will be stored in a locked box in a locked room. All audiotapes will be destroyed 10 years after the study ends.

HIPAA: As part of this study, we are collecting Private Health Information (PHI) such as: your name, age, race, sex, MetroHealth telephone number and MetroHealth email address. This information is being collected to help us understand if there are potential differences by age, race, and sex. All information will be kept in a password protected computer in a locked office. Only Dr. Bolen and the research assistant Paulette Sage will have access to these files. The following individuals, departments or agencies will have access to this information, i.e. IRB, FDA or DHHS for the purpose of reviewing subject protection. The investigator will have access to this information until 6 years after the study ends. At that time, the identifiers will be destroyed. The study file will be kept for ten years after study completion, at which time it too will be destroyed. You will have access to your identifiable information related to this study. You have the right to withdraw your permission/authorization for us to access this information at any time. No new identifiable information about you will be collected for study purposes.

If you have any questions or concerns regarding this research project, please contact Dr. Bolen at (216) 778-5359.

If you have any questions or concerns regarding your rights as a research subject, call the MetroHealth Institutional Review Board at (216)778-2077.

PATIENT/SUBJECT ACKNOWLEDGEMENT:

The procedures, purposes, known discomforts and risks, possible benefits to me and to others, and the availability of alternative procedures regarding this research study have been explained to me. I have read this consent form or it has been read to me, and I have been given the opportunity to ask questions or request clarifications for anything I do not understand. I voluntarily agree to participate in this study. I have been given a copy of this consent form.

Subject Signature Date

Signature of Person Obtaining Authorization Date (This must be an individual named in the protocol)

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