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1 An Evidence-Based Practice Approach to Chronic Illness and Disability

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Learning Outcomes After reading this chapter, you should be able to

• Explain how the U.S. health care system was created as well as how health indicators in the United States are a sign of the success or failure of the health care system.

• Compare health indicators in the United States to those of other developed nations.

• Compare health indicators of different groups within the United States.

• Compare the biomedical and biopsychosocial perspectives on health, illness, and disability.

• Examine Mills’s concept of sociological imagination to understand how an individual’s health is influenced by their environment.

• Analyze the principles of Bronfenbrenner’s ecological model of human development.

• Describe the principles of the person-in-environment classification system to determine intervention measures.

• Explain the five stages of grief and how these apply to illness and disability.

• Apply an evidence-based approach to contemporary issues in health, illness, and disability.

• Examine how social support systems support people throughout health, illness, and disability.

• Analyze the social implications of medical issues.

Section 1.1 Book Overview

1.1 Book Overview This textbook’s goal is to explore and critically analyze the social implications of medical issues. Throughout our investigation, emphasis is placed on empirical evidence in the con- text of interdisciplinary theoretical frameworks. More specifically, this book seeks to acquaint students with how chronic illness and disability are viewed, experienced, and treated within society. The prime focus is health in the United States with cross-cultural comparisons.

Chapter 1 introduces fundamental theoretical perspectives on health, chronic illness, and dis- ability that are applied throughout our investigation. These key theoretical frameworks, which guide modern health care in the United States and provide an approach for understanding contemporary health issues, include the biopsychosocial model; Bronfenbrenner’s ecologi- cal model of human development; the person-in-environment classification system; the five stages of grief as described by Kübler-Ross; and the evidence-based practices movement.

Chapter 2 defines chronic illness and disability and applies various models of disability to the lived experience of these conditions.

Chapters 3–10 present a series of health conditions: musculoskeletal disorders, diabetes, car- diovascular disease, cancer, HIV/AIDS, psychiatric conditions, degenerative diseases of the brain, and substance misuse. In each chapter, a brief sociohistorical overview of the condition is provided, along with an examination of how it affects both individuals and society over the life span. In addition, prevention education and treatment approaches are critically ana- lyzed, and related public policy is discussed, including access to and quality of available care. Throughout the text, evidence-driven approaches and interdisciplinary models are used as analytical tools for understanding each of these health conditions within the various contexts of society, and each condition is analyzed in view of Bronfenbrenner’s ecological model of human development.

Although many chronic conditions are covered in detail, other conditions should not be ignored. For example, respiratory diseases, blood diseases such as sickle cell anemia and hemophilia, and developmental disorders have a high prevalence as causes of disability. While these conditions are beyond the scope of the textbook, they are commonly seen in the health care setting.

Chapter 11 provides an overview of the Patient Protection and Affordable Care Act (PPACA or ACA) and reform efforts over the years. It explores how the U.S. health care system is funded and the shift from deaths caused by microbes (bacterial and viral infections) to chronic condi- tions. It ends by identifying some of the challenges that the U.S. health care system faces.

As a supplement, end-of-chapter critical-thinking questions and activities are included, as are appendices. These give detailed background about anatomy, biology, ecological theoretical models, issues commonly faced by health care providers and administrators, legal and ethical issues, and medical terminology.

This text provides a theoretically grounded introduction to health, chronic illness, and dis- ability. Case studies and cross-cultural comparisons help the reader grasp the biological, psy- chological, and societal dynamics and consequences of health and medical issues in modern society.

Section 1.2 Introduction: Health in the United States: An Overview

1.2 Introduction: Health in the United States: An Overview

The United States has a complex, fragmented health care delivery system. There are large corporations, small group practices, and single-owner practices. This fragmentation results in poor communication between providers; increasing costs of care; lower-quality care; and poor outcomes for patients. Further complicating the health care industry is that regardless of the organization’s size and whether it is for-profit or not-for-profit, all health care organiza- tions must work with different types of insurance providers, as well as with individual pay- ers, which are people who pay directly for medical care, rather than going through insurance.

Most people in America receive health insurance coverage through their employers, and cov- erage is somewhat portable even after changing jobs, though this is often very expensive. This trend began after World War II, when many employers included insurance as part of the compensation package of employees. According to Arthur Daemmrich of Harvard Business School:

During and after World War II, wage controls prevented US employers from offering higher salaries to attract employees. Instead, they began to compete through ever-more-generous benefits, including health insurance. . . . Further encouraging this trend, changes to the tax code in 1954 granted exemptions to employers that provided and managed health insurance. It became the norm for large employers to subsidize and manage insurance offerings for their workers. (2011, p. 5)

At the same time, many European countries had health insurance programs in place that cov- ered the majority of people, as they still do today (Field & Shapiro, 1993, p. 78).

The Patient Protection and Affordable Care Act (PPACA, or ACA, also known as Obama- care), which was signed into law in 2010 and fully enacted in 2014, mandated all U.S. citi- zens to obtain health insurance or pay a fine. Prior to 2014, people who were unemployed, employed by a company that did not offer health insurance, and/or did not qualify for Med- icaid or Medicare often went without health insurance coverage. Insurance plans under the ACA are offered through the Health Insurance Marketplace, an online shopping center for insurance plans. These are managed at the state government level and provide a list of insur- ers for people who do not have the option of getting insurance through an employer. The ACA offers tax credits based on income and Medicaid expansion—in which 19 states opted not to participate—to people who cannot afford to purchase coverage.

Under the ACA, health insurance companies cannot deny anyone health coverage based on previous medical history, cannot abandon a policyholder if there is a new diagnosis of a chronic illness, and cannot abandon a policyholder for reaching the annual or lifetime limit of coverage. Employers with more than 50 employees are required to offer health insurance coverage to their employees or face fines on a per-worker basis (Healthcare.gov, n.d.a). Insur- ance companies can, however, increase premiums for at-risk individuals and restrict access to nonemergency procedures through preauthorization requirements. Further, regardless of the insurance type, the quality, cost, and accessibility of care vary widely across the United States.

Section 1.2 Introduction: Health in the United States: An Overview

In 2018, President Trump signed into law the removal of the mandate—the annual fine—for people who choose not to purchase health insurance coverage, effective in 2019. It is expected that this will destabilize the health insurance industry, because fewer healthy people will pur- chase insurance. “To set premiums, insurers estimate how many people they will cover and what that will cost” (Gorenstein & Kasperkevic, 2017, para. 7). Insurance companies must estimate the number of people expected to buy insurance, those people’s quality of health, and the amount of money needed to cover the expenses for the estimated number of people. Healthy people use insurance less often, so their premiums help cover the expenses of other people who need care more often. If fewer healthy people are paying in, the insurance compa- nies pass the cost on to employers and health care providers. Reimbursement rates are negoti- ated with health care providers, and thus reduced. The health plans negotiate with employers on the premiums paid for employees. Employers then choose the most cost-effective plans, which are usually plans where the employee/patient pays a higher portion of the premium and has a higher deductible and higher copay. The physician, hospital, and other health care organizations receive less money for providing their services, and the patient pays more.

The ACA continues to evolve at the federal level. States run their own systems of coverage for low-income residents (through Medicaid and others), but insurance for high-risk people can be expensive. Thus, access to health care in the United States has come to be seen as a social justice and equality issue. This will be examined in greater detail throughout the text.

According to the World Health Organization (WHO):

Many factors combine together to affect the health of individuals and com- munities. Whether people are healthy or not, is determined by their circum- stances and environment. To a large extent, factors such as where we live, the state of our environment . . . our income and education level, and our relation- ships with friends and family all have considerable impacts on health. (2018, para. 1)

These factors are called the social determinant of health. It is rare that a person can control these determinants of health, yet there is a great deal of judgment of people who are criticized for their illnesses or praised for having good health (WHO, 2018c). Because the U.S. health system is so complex, many people are unable to access the care they need, and/or the qual- ity of the care is lacking. Furthermore, quality of care for similar health issues often differs, depending on regional norms. Doctors in one area of the country will use a certain standard of care for a diagnosis, while another area uses a different standard of care for the same diag- nosis. Quality of care differs when comparing for-profit, private hospitals to not-for-profit and safety-net hospitals. These issues lead to a greater number of people who delay getting care for a minor problem, which may progress into a chronic illness due to lack of early interven- tion. For example, people with diabetes, which often leads to heart disease, usually appear relatively healthy at the onset. A more serious illness may not be inevitable, but the amount of planning families can do for such a possibility, in terms of health coverage and improvements in their diet and lifestyle, varies. Some risk factors can be mitigated by lifestyle choices. Other risk factors, such as lack of access to quality health care, are tied to social-structural issues such as geography and social class.

Geography is a significant factor in health. As previously mentioned, there are regional stan- dards of care. Diagnosis rates of certain conditions may also vary by region, as will be seen in

Section 1.2 Introduction: Health in the United States: An Overview

later chapters. Lack of access to quality health care can be due to distance to the provider’s location, inability to get affordable transportation for the visit, inability to pay for the care, language differences, legal status of the person needing care (and fear of being reported), cul- tural norms, and more. Another way in which geography factors into health status is that peo- ple may live in areas where they are exposed to industrial waste but cannot afford to move. An example of this is Flint, Michigan, where the water has been contaminated and undrinkable since 2014 (Dingle, 2016). Housing values have decreased because of the water issues. The people who live in Flint are forced to buy bottled water or drink contaminated water that leads to serious health issues.

Social class, which is influenced by a person’s income, wealth, education, and occupation, plays a role in one’s ability to get health care as well as the quality of health care the per- son can access. The Centers for Disease Control and Prevention (CDC) explicitly lists “no health care” alongside “smoking, drinking [and] obesity” as risk factors that can dramatically increase the likelihood of negative health outcomes over the life span (U.S. Department of Health and Human Services, 2003, p. 6).

An individual’s experience is shaped not only by micro-level medical issues, such as medical risk, but also by a host of macro-level issues, such as immigration, economics, insurance mar- ket dynamics, and educational opportunities. (For an explanation of micro- and macro-level influences, see Bronfenbrenner’s ecological model of human development in section 1.6 of this chapter.)

From this perspective, health, chronic illness, and disability can be viewed as important social problems in the United States. Dr. Joseph Gusfield, former president of the Society for the Study of Social Problems, provides a useful definition. He argues that “the concept of a ‘social problem’ is a claim that some condition, set of events, or group of persons constitutes a troublesome situation that needs to be changed or [improved]” (Gusfield, 1996, p. 17). Social problems include subjects as diverse as violent crime, poverty, racism, teen pregnancy, home- lessness, mental illness, homophobia, transphobia, and bullying.

Gusfield emphasizes that the ability of an individual or group to call attention to a particular social problem depends largely on the power and social location of those making the claim. Social location encompasses personal identifying factors that may or may not change over the lifetime. For example, race, culture, ethnicity, sex and gender, sexual orientation, ability, income, job status, and family status are all part of an individual’s social location. These fac- tors influence our personal experiences in life, affect how others treat us, and contribute to our level of privilege in society. Many people are unaware of how their social location offers privileges that people in a different social location do not experience. Thus, our discussion of health connects with larger issues of culture, social location, and power dynamics.

Health, illness, disability, and health care do not exist in a vacuum. Rather, they are influenced by the society in which they exist, continually being shaped and reshaped as society changes and it evolves. This book embraces an interdisciplinary perspective to help facilitate the sys- tematic, evidence-driven investigation of chronic illness and disability in the contemporary United States. We will introduce biological, psychological, and sociological theories that can inform a critical investigation of some of the most important issues and social problems fac- ing the United States today.

Section 1.3 Health in the United States: A Macro-Level Empirical Overview

1.3 Health in the United States: A Macro-Level Empirical Overview

Health, illness, and disability can be examined through the lens of social science, in terms of how they impact individuals and groups within society. According to Dr. Anthony Giddens, a professor of sociology at the London School of Economics, “One of [medical] sociologists’ main concerns is understanding the experience of illness—how being sick, chronically ill, or disabled is experienced by sick persons and by those with whom they interact” (Giddens, Deneier, Appelbaum & Carr, 2011, p. 407). These aspects are micro-level concerns. In addi- tion, many social scientists examine macro-level issues. These include comparing health issues across countries and across groups within countries and how these findings intersect with social stratification and inequality.

Broadly construed, during the past century, health outcomes have improved significantly in the United States and other developed countries as medical science has advanced (Giddens et al., 2011). Many serious diseases, such as smallpox, have been eliminated. It was once thought that polio had been eradicated, too; however, the polio virus is still active in three countries: Nigeria, Pakistan, and Afghanistan (Crosta, 2017). Life expectancies have increased. However, like many topics of interest to society, measuring health across cultures and across nations is a complex process, involving many metrics and variables. A closer examination of several cor- nerstone health indicators reveals that health in the United States appears to have improved relatively slowly in recent decades, compared with many other developed nations (Crimmins, Preston & Cohen, 2011; Giddens et al., 2011).

Web Field Trip

California is considering a proposal for a statewide, single-payer plan. As of July 2018, the bill has been pulled from the General Assembly because there is no revenue source evident in the bill. You can listen to an interview with Dr. Robert Pollin, professor of economics and co-director of the Political Economy Research Institute at the University of Massachusetts Amherst, here: (https://archives.kpfa.org/data/20170629-Thu0700.mp3). The interview begins at 12:15 minutes and ends at 30:19. In the interview, Professor Pollin discusses the economics and affordability of the single-payer proposal. If you prefer to read his analysis, you can do so here: (https://www.peri.umass.edu/publication/item/996-economic -analysis-of-the-healthy-california-single-payer-health-care-proposal-sb-562).

Critical-Thinking Questions 1. Do the increased initial costs outweigh the long-term benefits? 2. How will people react to increases in taxation to provide health care to all residents

of the state?

https://archives.kpfa.org/data/20170629-Thu0700.mp3

https://www.peri.umass.edu/publication/item/996-economic-analysis-of-the-healthy-california-single-payer-health-care-proposal-sb-562

Section 1.3 Health in the United States: A Macro-Level Empirical Overview

Life Expectancy Life expectancy is arguably the single most impor- tant health-related measure in a society. Life expec- tancy is a statistical projection of how many years a person is likely to live based on the average age of mortality of a given group or population. In con- trast, life span refers to the maximum age that an individual human being has reached before death within a given group or population. A comparison of life expectancies across groups is informed by a discussion of risk factors, health care access, and larger quality-of-life issues.

The Human Mortality Database is one of the most robust resources available on the topic of life expec- tancy. It provides an in-depth analysis of demography and life expectancy data across 37 countries. This database is the work of two teams of scientists: one from the Department of Demography at UC Berkeley, and one from the Max Planck Institute for Demographic Research in Rostock, Germany. In 2011, the Committee on Population within the National Research Council conducted a rich, in-depth examination of The Human Mortality Database, which revealed a series of important trends concerning health and health care in the United States and worldwide (Crimmins et al., 2011). We can collect information about births, infant mortality, and life expectancy from developed countries from the Human Mortality Database, and then compare the data. For the purposes of this text, we collected data from the follow- ing countries for our comparison, in addition to data from the United States: Australia, Can- ada, Denmark, France, Germany, Japan, the Netherlands, Sweden, and Switzerland. For many countries, the most recent data available is from 2015.

Cross-national life expectancy comparisons demonstrated a significant and continuing health gap between the United States and other western, industrialized countries. The Committee on Population compared life expectancy data across industrialized countries from 1980 to 2007 for both men and women. In the United States during this period, life expectancy for men increased from 69.99 to 75.64 years of age, a difference of 5.65 years. Although a consid- erable increase, it was lower than the average life-expectancy increase experienced by men in all 21 nations in this phase of the study. During this same period, life expectancy for women in the United States increased from 77.5 to 80.8 years of age—a gain of 3.3 years. Just as for the men, this was a considerable increase. However, the life expectancy increase of women in the United States was only marginally higher than that of women in the other 21 countries examined (Crimmins et al., 2011).

The data collected from The Human Mortality Database—updated with 2015 data—indicates that the United States has the lowest life expectancy among these nations, at 78.95 years (see Figure 1.1). In 2015, Japan had the highest life expectancy, at 83.97 years (n.d.). According to Kate Kelland, South Korea will have the highest life expectancy by the year 2030, at an average of 90 years. “South Korea’s much greater average life expectancy would be due to several fac- tors including good childhood nutrition, low blood pressure, low levels of smoking and good access to healthcare” (Kelland, 2018, para. 11).

Bernardbodo/iStock/Getty Images Plus Life expectancy is an important health- related measure in society.

Section 1.3 Health in the United States: A Macro-Level Empirical Overview

Cross-national life expectancy comparisons demonstrated a significant and continuing health gap between the United States and other developed countries. According to The National Academies of Sciences, Engineering and Medicine, the United States lags behind other devel- oped countries, which have universal health coverage, because we have “inadequate health care systems, unhealthy behaviors, social and economic factors, and environmental factors, such as metropolitan landscapes that encourage car use rather than exercise” (2018, para. 2).

Infant and Maternal Mortality Infant mortality, another critically important statistical measure of health and wellness, rep- resents the number of infants who die in the first year of life out of every 1,000 live births in a given population. According to the Central Intelligence Agency (CIA), there were 5.8 deaths per 1,000 live births in the United States in 2017, with rates being slightly higher among male babies, at 6.3 deaths per 1,000 live births, versus 5.3 per 1,000 live female births (see Figure 1.2) (2018b). Once again, the United States fares worse than comparably developed nations in this key measure of health.

Figure 1.1: Life expectancy in developed countries, 2015

When compared with other developed countries, the United States has lower life expectancy.

Source: Human Mortality Database. (n.d.). Complete data series. Retrieved from http://www.mortality.org/

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Section 1.3 Health in the United States: A Macro-Level Empirical Overview

Maternal mortality data represent women who die during birth or within 42 days after the end of a pregnancy. It is not reflective of the reason the pregnancy ended (i.e., birth of child, miscarriage, or abortion), only that the mother died because of complications from the pregnancy or from giving birth (WHO, 2006). Collecting maternal mortality data provides an understanding of the overall health of women, their access to health care services, their income level and status within society, and how well the health care system functions in their country (WHO, 2018b). The causes of maternal mortality include poor-quality or lack of pre- natal care, complications during childbirth, living in a rural area, poverty, or post-delivery ill- nesses (WHO, 2018b). In the United States, there were 14 maternal deaths for every 100,000 births in 2015 (CIA, 2018b). Compared to the other developed countries identified in the pre- ceding infant mortality graph, the maternal mortality rate in the United States is more than double the annual rate as that of most of those same countries (see Figure 1.3) (CIA, 2018a). Most maternal deaths are preventable (WHO, 2018b).

Figure 1.2: Infant mortality rates in developed countries, 2016

When compared with other developed countries, the United States has a higher infant mortality rate.

Source: Human Mortality Database. (n.d.). Complete data series. Retrieved from http://www.mortality.org/

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Section 1.3 Health in the United States: A Macro-Level Empirical Overview

Cross-National Analysis Preliminary analysis by the Committee on Population revealed that between 1980 and 2007, the United States, Denmark, and the Netherlands experienced a lag in life expectancy gains relative to other developed countries. Comparatively high rates of lung cancer and respira- tory disease mortality were likely the driving forces behind this lag. Specific to the United States, the life expectancy gap was also seen as a by-product of comparatively high rates of heart disease for both men and women. In addition, women in the United States had higher rates of mortality related to cerebrovascular conditions, diabetes, and mental health ailments (Crimmins et al., 2011).

A series of behaviors and dynamics contribute to the United States’ comparatively high rates of cancer, respiratory disease, heart disease, and other ailments. Current data suggests that smoking tobacco, obesity, inadequate diet, physical inactivity, substance use, high-risk sexual practices, violence, socioeconomic inequality and poverty, and a lack of universal health care contribute to the United States’ underachievement on life expectancy and other health out- come measures. According to Avendano and Kawachi:

The American health disadvantage begins at birth and extends across the life- course, and it is particularly marked for American women and for regions in the US South and Midwest. Proposed explanations include differences in health care, individual behaviors, socioeconomic inequalities, and the physi- cal and built environment. (para. 1)

Figure 1.3: Maternal mortality rates in developed countries, 2015

When compared with other developed countries, the United States has a higher maternal mortality rate.

Source: Central Intelligence Agency. (2018a). The world factbook: Maternal mortality ratio. Retrieved from https://www.cia.gov/library /publications/the-world-factbook/fields/2223.html

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Section 1.3 Health in the United States: A Macro-Level Empirical Overview

The “built environment” includes details such as public transportation, the proximity to com- monly visited retailers, and the amount of physical activity people regularly get due to the design of an area. Avendano and Kawachi further state that American women have higher rates of preterm birth, teen pregnancy, poor maternity care, and gestational diabetes. For older Americans, there is “a higher prevalence of heart disease, stroke, hypertension, diabe- tes, obesity [and] lung disease” (Avendano & Kawachi, 2014, para. 11).

The life expectancy gap experienced by the United States was particularly unexpected, given the substantial national resources dedicated to health care. The committee concluded that:

The relatively poor performance of the United States with respect to achieved life expectancy over the recent past is surprising given that it spends far more on health care than any other nation in the world, both absolutely and as a percentage of gross national product. (Crimmins et al., 2011, p. 1)

Data compiled by the Organisation for Economic Co-operation and Development (OECD) indicates that, of all developed countries, the United States spent the greatest amount on health care: 17.2% of its gross domestic product (GDP). Other developed countries spent sig- nificantly less. Switzerland is the next-highest comparable country, at 12.4% of its GDP; Ger- many spent 11.3%; Sweden and France spent 11.0%; Japan spent 10.9%; and Canada spent 10.6% of its GDP on health care (see Figure 1.4). These amounts cover both public and private expenditures. The percentage listed is the proportion of money spent throughout the econ- omy attributed to health care (2018).

Figure 1.4: Select cross-national comparison of health care expenditures as a percentage of GDP, 2016

When compared with other industrialized nations, the United States spends a higher percentage of its total GDP on health care expenses.

Source: Organisation for Economic Co-operation and Development (OECD). (2018). Health spending. Retrieved from https://data.oecd .org/healthres/health-spending.htm

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Section 1.3 Health in the United States: A Macro-Level Empirical Overview

Ethnicity, Race, and Sex The subjects of ethnicity, race, sex, gender, and social class underpin our investigation of health, chronic illness, and disability. Sociologists distinguish between the concepts of race and ethnicity. Race refers to a group of individuals who are distinguished by perceived com- mon physical characteristics. These physical characteristics are frequently broad and over- lapping but are often perceived as exclusive and distinct. In contrast, ethnicity refers to a group of individuals who share common cultural beliefs, norms, values, and practices. These common cultural elements may include family customs, religious practices, and traditions centered on food, music, and art.

Similarly, sociologists distinguish between the terms sex and gender, a critical distinction for our investigation of health, illness, and disability. Sex refers to the physical and biologi- cal differences between men and women. In contrast, gender refers to the cultural and social expectations and meanings associated with being male or female in society. Thus, sex differ- ences are determined by genetics, whereas gender differences are produced by the social and cultural contexts of a given society.

In the United States, poverty disproportionately affects many racial and ethnic minority groups, and members of these minority groups are overrepresented among the lower classes (Bishaw, 2011). Moreover, important differences in health and needs exist between men and women over their respective life spans. Thus, any adequate investigation of a society’s health must examine empirical differences between sexes, genders, and racial and ethnic groups.

Evidence reveals that there are significant life expectancy differences among ethnic and racial groups in the United States. According to the World Life Expectancy website, in 2014, Asian women experienced an average life expectancy of 88.89 years, Hispanic women experienced an average life expectancy of 85.44 years, and Asian men averaged 84.13 years—the highest life expectancies among the groups included in the analysis (see Figure 1.5) (n.d.).

Figure 1.5: Life expectancy by race or ethnicity in the United States, 2014

For both male and female populations, there appears to be a significant life expectancy difference among ethnic and racial groups in the United States.

Source: Human Mortality Database. (n.d.). Complete data series. Retrieved from http://www.mortality.org/

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Section 1.3 Health in the United States: A Macro-Level Empirical Overview

White women are in fourth place with a life expectancy of 81.48 years in 2014, followed by Hispanic men (80.16 years), Black women (78.46 years), Native American women (78.1 years), White men (76.71 years), Black men (72.29 years), and Native American men at 72.1 years (USA Life Expectancy, n.d.). Some experts contend that the relatively high life expectan- cies among Hispanic men and Hispanic women are the result of ethnic/cultural dynamics; more specifically, that high levels of social cohesion and family and community support may improve health outcomes among Hispanics more so than economic factors alone (Giddens et al., 2011).

In addition, although Black men and Black women have lower life expectancies than their White and Hispanic counterparts, the gap between White and Black life expectancies has decreased significantly in recent years. Historically, Black Americans have had lower life expectancies owing to a series of complex and interconnected factors. Blacks disproportion- ately face the challenge of poverty in the United States. Many experts contend that poverty contributes to a lack of access to health care and education, both of which would facilitate pre- ventive health efforts. Moreover, Black Americans experience higher rates of homicide, heart disease, and cancer. As we investigate health, illness, and disability as a social justice matter and as a social problem, equitable access to health care among different groups will be a prominent topic (Giddens et al., 2011; U.S. Department of Health and Human Services, 2012).

Many theorists contend that increasing educational opportunities and decreasing social class inequalities generally will facilitate more equality and, therefore, social justice regard- ing health outcomes in American society. However, our brief macro-level empirical overview of health in the United States reaffirms the complexities of examining differences between groups in modern society. As with many social problems, the answers typically involve many factors and variables. For example, although Hispanic populations have higher rates of pov- erty compared to their White counterparts, meso-level factors such as family and community seem to intervene to facilitate longer life expectancies despite comparatively high poverty rates. Social class, race, sex, and gender do not exist in a vacuum; rather, they intertwine with individual and social-structural factors such as education, housing, working conditions, and health choices. Our theoretical approach to understanding medical issues in modern society attempts to explore these complexities. It does so using theoretical paradigms that examine biological, psychological, and sociological factors from different levels of analysis.

Social Class In the United States, important group-based differences persist in terms of both health out- comes and access to health care. The evidence suggests that social class plays a significant role in determining health outcomes within a given society. From a sociological perspective, social class refers to a group of people who, at any given time, have a similar level of economic and social status—especially income, wealth, and power. Social class is in part about tangible measures, such as wealth and income, but it also includes less tangible factors, such as social status, social influence, social networks, customs, and shared culture.

Culture encompasses commonalities among a group of people. Daily habits that belong to that group of people as a normal part of their way of life (e.g., food choices), religious prac- tices, moral beliefs, and bonding with other people from both within and outside their group are all examples of culture. Culture affects how people perceive what health is, what illness

Section 1.3 Health in the United States: A Macro-Level Empirical Overview

is, how often they seek professional care and under which circumstances, how they interact with health professionals, how much they support one another through periods of illness, and which methods of treatment they seek when facing illness.

Cultural bias refers to the preferences of specific cultures, which include preferences relating to health and health care. For example, Hispanics may prefer to seek the help of a curandera— a healer who uses folk and natural remedies—rather than a Western medical doctor. Further, Hispanic women are generally the caregivers of the family, so the men will often indicate they understand what the doctor is sharing even when they do not fully understand, leaving it up to the women to integrate the recommended changes into the man’s life.

Giddens et al. (2011) argued that three elements of social class are most critical for shaping the health dynamics within a society. First, income often determines the quality of medical care an individual is able to receive. People with higher incomes can often find higher-quality health care providers and medicines and can likely exert more control over the care that they receive.

Second, occupation has a significant impact on health. For example, members of the working class are more likely to hold physical, rugged, or dangerous jobs that may have long-term, negative health consequences or increase their exposure to environmental hazards.

Third, education is an element related to social class that significantly influences health. Evi- dence suggests that those with higher levels of education are more likely to make healthy lifestyle choices, including exercising more and avoiding cigarette smoking. This correlation may be due to the positive association between education achievement and income. Higher income often means greater access to resources such as gyms, safe neighborhoods, health- food grocery stores, and better access to health insurance (e.g., through employers). Thus, more educated people have greater opportunities to make healthier lifestyle choices and are likely socially influenced to do so. Giddens et al. (2011) concluded that matters of social class are directly related to health differences between racial and ethnic groups in America.

Health as Social Justice Fundamentally, social justice is about equality. In the words of Dr. David Miller, a professor of political theory at the University of Oxford, “Social justice has always been, and must always be, a critical idea, one that challenges us to reform our institutions and practices in the name of greater fairness” (Miller, 1999, p. x). Even with these ideas in mind, a precise definition of social justice has been the subject of great debate among theologians, philosophers, and sociopolitical theorists for centuries. In fact, influential thinkers such as Aristotle, St. Thomas Aquinas, Immanuel Kant, Jeremy Bentham, John Rawls, and many others theorized about what justice means, as well as about the elements of a just society.

Social justice is arguably a core principle of modern, democratic societies. Access to basic resources and the “fair allocation of public goods” are considered fundamental rights by many in contemporary society (Miller, 1999, p. 10). However, there remains much disagree- ment about what resources are most important in society, how to fairly distribute them, and who should be responsible for the distribution. According to Miller (1999):

Section 1.4 The Biopsychosocial Model of Health Care

[W]e should not be dogmatic about delineating the subject-matter of social justice. We can identify certain resources whose distribution must be of cen- tral concern to any theory of (social) justice—income and wealth, jobs and educational opportunities, health care and so forth . . . there is no canonical list of primary goods. . . . Thus, fair access to health care is likely a core ele- ment of a socially just society. (p. 11)

In the remainder of this chapter, we will examine theories of health care and evidence about the distribution of health, illness, and disability among individuals and groups in contem- porary America. Health and health care access can be viewed through the lenses of biology, psychology, and sociology as necessary components of a socially just society.

When considering the reasons people experience illness, it is helpful to use developmen- tal theories to understand factors that cause health and illness, as well as in understanding why people react as they do to illness. Developmental theories help explain the connections between biological, psychological, and social factors in health and illness. The PIE classifi- cation system allows the health care worker to identify the challenges faced by the person, which in turn allows the worker to develop intervention options (Karls & Wandrei, 1994). Finally, in using the five stages of grief originally created by Elisabeth Kübler-Ross, M.D. in the late 1960s, the health care provider and support staff can understand what to expect from a patient when delivering a diagnosis of chronic illness.

1.4 The Biopsychosocial Model of Health Care For more than a century, Western medicine had been built upon the principles of the biomedi- cal model of health. The biomedical model assumes that good health is the standard human experience and seeks to treat symptoms and cure disease. Thus, this perspective treats illness and disease as abnormal biological problems that are best addressed by offering objective treat- ments grounded in medical science and research. The biomedical model focuses on the patient in isolation, largely ignoring any psychological and social context. The biomedical model empha- sizes specialization both within disciplines and in medical practices—all conventions that were challenged by the emergence of the biopsychosocial model (Beyerstein, 1999).

The foundation for the biopsychosocial model was George L. Engel’s influential 1977 article in Science, the internationally respected journal of the American Association for the Advance- ment of Science and one of the flagship academic journals of the medical field. From Engel’s article, the biopsychosocial model was created in the late 1990s, and it added considerable breadth to the existing, dominant theoretical perspectives on health care. The biopsychoso- cial model constituted a whole new way of looking at modern medical science. Emphasizing an interdisciplinary approach and including the social context of illness, this perspective cre- ated a legacy of research and attendant practices in the field of health care (Borrell-Carrió et al., 2004; Engel, 1977).

For example, consider a biopsychosocial approach to the treatment of depression. Hormones and genetic predispositions are considered important biological factors to examine; coping strategies and decision-making processes might be important psychological factors; and a his- tory of trauma and the availability (or lack thereof ) of a supportive peer group or community

Section 1.4 The Biopsychosocial Model of Health Care

might be important sociological factors to consider. The biopsychosocial model posits that these dimensions influence one another in a profound way, and thus they must all be incor- porated in a meaningful treatment regimen.

Conceptual Framework To provide a basis for understanding the determinants of disease and arriv- ing at rational treatment and patterns of health care, a medical model must also take into account the patient, the social context in which he lives, and the complementary system devised by society to deal with the disruptive effects of illness, that is, the physician role and the health care system. This requires a biopsychosocial model. (Engel, 1977, p. 132)

Engel’s biopsychosocial model has both theoretical and practical components. As a theoreti- cal perspective on health and wellness, the biopsychosocial model places an individual’s bio- logical human health and illness into the context of the larger society. It holds that the lived experience of illnesses and disabilities at the micro level (see Bronfenbrenner’s ecological model of human development in section 1.6 of this chapter) are profoundly shaped by a series of complex, overlapping social factors. Thus, the biopsychosocial model, as its name implies, encourages an integration of scientific disciplines that had long been treated as largely dis- tinct: biology, psychology, and sociology. As Borrell-Carrió et al. (2004) put it, “Philosophi- cally, it is a way of understanding how suffering, disease and illness are affected by multiple levels of organization, from the societal to the molecular” (p. 576).

From a practical perspective, proponents of the biopsychosocial model argue that this more encompassing, integrated approach will facilitate the best care (and by extension, preventive measures) for the patient. The biopsychosocial model challenges medical professionals to “enter the patient’s world” and to understand how sociological and psychological factors each shape that person’s experience of health, illness, and disability (Weston, 2005, p. 391). Con- sequently, physicians are challenged to seek out, develop, and nurture a skill set comprising these related disciplines. They should be able to provide the sort of holistic health care that the biopsychosocial approach favors.

Holistic Health Care The American Holistic Health Association defines holistic health care as “the art and science of healing that addresses care of the whole person—body, mind, and spirit” (n.d., para. 1). This perspective, like the biopsychosocial model, seeks to integrate a variety of complemen- tary prevention and treatment programs over the life span. Moreover, the dignity of the per- son is emphasized in this encompassing and multiperspective approach.

Chronic Disease, Increasing Medical Costs, and the Biopsychosocial Model The latter half of the twentieth century witnessed a dramatic increase in the costs of health care borne by the American public; these financial dynamics directly contributed to the adoption of the biopsychosocial model of health. In 1960, national health care expenditures constituted 5.2% of the GDP, translating to per capita costs of about $147. By 1990, health

Section 1.4 The Biopsychosocial Model of Health Care

care expenditures accounted for 12.5% of the GDP and per capita costs of $2,854. By 2010, health care costs had ballooned to 17.9% of the nation’s GDP and whopping per capita costs of $8,402 (dollar amounts not adjusted for inflation) (HHS, 2013). As noted previously in this chapter, health care costs in the United States have seen a slight drop to 17.2% of the nation’s GDP through 2017 (OECD, 2018).

In the modern era, chronic diseases are arguably the most detrimental and most costly health conditions. Approximately 75% of all health care costs in the United States are related to chronic health conditions. Because it emphasizes prevention, lifestyle factors, and holistic health over the life span, the biopsychosocial model is particularly well equipped to target chronic diseases such as cancer and heart disease, whereas the biomedical model was not particularly effective at doing that. Thus, the biopsychosocial approach might be more effec- tive both fiscally and in terms of health outcomes (Johnson, 2012).

Data and Evidence Across Levels and Disciplines One of the paramount advantages of the biopsychosocial approach is that it provides medi- cal science with a variety of data and evidence, which can stimulate innovation. Data may be defined as “factual information used as a basis for reasoning, discussion, or calculation,” such as DNA samples, observations, or information from interviews (Giddens et al., 2011, p. A2).

According to Engel (1981), “The biopsychosocial model enables the physician to extend appli- cation of the scientific method to aspects of everyday practice and patient care previously not deemed accessible to a scientific approach” (p. 102). The all-encompassing approach of the biopsychosocial model offers a series of theoretical and practical advantages. However, experts and practitioners have also noted a series of implementation challenges, such as phy- sicians’ continued adherence to traditional practices, the difficulty of changing human behav- ior, and differences in cultural tastes, preferences, and habits.

Implementation Challenges As noted, the biopsychosocial model of health care amounted to a paradigm shift in how we conceptualize and practice medicine. With its emphasis on interdisciplinary, multilevel analyses, this model challenged a series of longstanding traditions in health care. W. Wayne Weston, an emeritus professor at the University of Western Ontario in family medicine, argued that the “application of the model is hampered by the conventional clinical method, which demands uniformity and comprehensiveness” (2005, p. 387). That is, clinicians who remain wedded to traditional, discipline-specific ways of treating patients might resist the use of the biopsychosocial approach. Another obstacle to implementation is the health care billing system, which uses codes that emphasize disease diagnoses to obtain reimbursement from insurance companies.

In addition to longstanding habit, another obstacle to effective implementation of the biopsy- chosocial model of health care involves practical concerns. Physicians have the daunting task of overhauling their skill set to not only diagnose medical problems but also to locate these medical problems in the context of an individual’s larger lived experiences, both psychologi- cal and sociological. Weston (2005) argued that “this approach is only possible if the field of

Section 1.4 The Biopsychosocial Model of Health Care

relevant enquiry is narrow” (p. 390). Other experts have argued that medical health profes- sionals may be able to apply the biopsychosocial model to relatively simple problems, but that more complex situations would require a more sophisticated response.

Susan McDaniel, an associate professor at the University of Rochester School of Medicine and Dentistry and a leading expert on how to conceptualize and execute the biopsychosocial model in everyday practice, agreed that individual medical experts may not always be able to deliver the promised integrated approach of the biopsychosocial model. Applying this model in a clinic might be particularly challenging when dealing with complicated medical problems that require a more nuanced approach:

Although physicians or nurse practitioners alone can practice biopsychosocial medicine with straightforward medical problems, many more complex prob- lems require multiple providers. Together, physicians and psychologists can implement a biopsychosocial approach to a wide range of difficulties related to health and illness. (McDaniel, 1995, p. 117)

As we see more and more often, it takes a team of people to provide the support and guidance people need to improve their health.

Although some experts argue that it is unfeasible for physicians to apply the biopsychosocial model in an everyday clinical setting, Engel (1981) and others disagree. They argue that many skilled medical care professionals already integrate psychological and sociological elements into their diagnosis and treatment processes. Therefore, the biopsychosocial model merely provides a theoretical tool to help locate, discuss, and analyze many aspects of treatment more explicitly. Regardless of pragmatic concerns, this perspective emphasizes the health and welfare of the patient.

The Future of Interdisciplinary Medical Care Some critics of the traditional clinical approach argue that it dehumanizes the patient and “regard[s] patients as objects” by limiting analysis to clinical procedures only (Borrell-Carrió, 2004, p. 576). In contrast, by emphasizing various psychological and sociological contexts of the patient, Engel’s biopsychosocial model integrates the lived experience component into clinical methodologies. This lived experience may serve to contextualize and humanize the health care process. For example, treating a patient with an obesity problem might involve managing the anxiety and stress that causes a person to use food as a method of coping and choosing a broader, more personalized treatment regimen.

Proponents of the biopsychosocial model believe that an interdisciplinary approach provides the opportunity to create more effective treatments. Suls and Rothman (2004) wrote that this broad model may ultimately help medical professionals provide better care for their patients. They argued that the future of the biopsychosocial approach relies on a long-term dedication to an interdisciplinary approach to medical education, practice, and research:

Continuing success in health psychology depends on a strong commitment to the biopsychosocial model and its implications. This means emphasis on transdisciplinary collaboration; striving for theoretical and research develop- ments that cultivate the multilevel, multisystem, and multivariate nature of

Section 1.4 The Biopsychosocial Model of Health Care

Relationship to the World Health Organization (WHO) Operating under the umbrella of the United Nations, the WHO is an established leader on medical and health issues worldwide. It has adopted a model for understanding health, disability, and chronic illness that is rooted in the biopsychosocial framework. In addition, the WHO publishes the International Clas- sification of Diseases, which has become a standard for clinical and epidemiological practice (WHO, 2010). Since 1990, the WHO’s Global Burden of Dis- ease Study has been measuring the years of life lost due to disease or disability (WHO, n.d.).

Shortly after the turn of the new millennium, the WHO officially adopted the International Classifi- cation of Functioning, Disability and Health, more

commonly referred to as the ICF. This initiative was supported by all 191 members of the WHO as “the international standard to describe and measure health and disability” (WHO, 2018a, p. 1). According to the WHO, this model is consciously built on biopsychosocial prin- ciples. “Within the ICF framework, functioning and disability are viewed as a complex interac- tion between the health condition of the individual, the contextual factors of the environment, as well as personal factors” (Chan, Chronister & da Silva Cardoso, 2009, p. 14).

health processes; and the development of curriculum [sic] and funding poli- cies for the next generation of researchers and practitioners that recognize the complexity of the enterprise. (Suls & Rothman, 2004, p. 124)

Web Field Trip

Please visit YouTube.com and view the short video on the biopsychosocial model from Dr. Kenneth D. Craig (https://www.youtube.com/watch?v=pQbnmi5f TZY). Dr. Craig reviews the core elements of the biopsychosocial model and, using the case study of pain-related disability, discusses the model’s potential advantages over the traditional biomedical model.

Critical-Thinking Questions 1. According to Dr. Craig, why is it important to understand the psychological impacts

and social factors associated with disease and illness? 2. Do you think that Dr. Craig makes a compelling case for the usefulness of the

biopsychosocial model? Why or why not?

mseidelch/iStock/Getty The World Health Organization is an established leader on medical and health issues throughout the world.

https://www.youtube.com/watch?v=pQbnmi5fTZY

Section 1.5 Mills, Sociological Imagination, and the Biopsychosocial Model

The WHO seems particularly enthusiastic about the biopsychosocial ICF model because it fits neatly into its international mission. The ICF emphasizes the ramifications of health issues and how all individuals exist on “a health continuum so that people both with and without disability are included” (Falvo, 2009, p. 3). Additionally, the ICF allows the WHO to easily com- pare health consequences across nations and cultures. Moreover, the ICF model emphasizes that the experience of disability and chronic illness is not limited to any particular region, country, or social group. Rather, the ICF mainstreams the experience of disability and recog- nizes it as a universal human experience (WHO, 2018a, p. 1).

1.5 Mills, Sociological Imagination, and the Biopsychosocial Model

Renowned sociologist C. Wright Mills (1916–1962) encouraged the development of the soci- ological imagination—an understanding of how larger social forces affect the lived experi- ences of individuals. This perspective views individual experiences and challenges as inher- ently linked to larger social-structural dynamics. In his cornerstone piece, Mills (1959) argued, “The sociological imagination enables its possessor to understand the larger historical scene in terms of its meaning for the inner life and the external career of a variety of individuals” (p. 8).

The sociological imagination can broaden the study of health, illness, and disability. For example, at first glance, a case of cancer can be conceived of as an individual health issue. But contemporary research suggests that environmental factors, such as pollution and toxins, significantly increase the prevalence of cancer. In addition, diabetes can be seen as an indi- vidual, personal misfortune. However, it is possible that larger structural factors, including the economy and the scarcity of nutritious foods in marginalized, low-socioeconomic-status communities, may play a role in the prevalence and experience of the disease.

Embracing the sociological imagination encourages us to use the power of the scientific method to examine a social problem from various levels. Much like Bronfenbrenner’s ecologi- cal model of human development (discussed in section 1.6), the sociological imagination facilitates a depth-oriented understanding of social problems that examines a series of struc- tural and environmental factors that shape individual biology.

Case Study: Talcott Parsons and the Sick Role

Talcott Parsons was a functionalist sociologist credited with founding the field of medical sociology. His concept of the sick role was significant sociologically, because it framed illness as a form of deviant behavior. Functionalists argue that society is like a biological organism; all parts of society are interdependent, and all parts have a prescribed role to play. These interdependent parts must all function in concert for society as a whole to run smoothly. Within this framework, illness is seen as deviant, in the sense that it impedes an individual’s ability to carry out his or her role in the family, in the workplace, and in larger society. Parsons argued that as long as the sick individual actively works to improve his or her health, that person is entitled to certain rights. The sick individual becomes exempt from some responsibilities within the functionalist system and is perceived as not being totally responsible for this deviation from normative expectations (Giddens et al., 2011).

Section 1.6 Bronfenbrenner’s Ecological Model of Human Development

1.6 Bronfenbrenner’s Ecological Model of Human Development

In the 1970s and 1980s, Russian-American psychologist Urie Bronfenbrenner developed the ecological model of human development, which situates an individual’s development throughout life within layers of environmental experience. Each environmental layer con- tains prescribed norms, values, roles, and expectations. Bronfenbrenner (1981) argued that “the ecological environment is conceived as a set of nested structures, each inside the next, like a set of Russian dolls” (p. 3). His model proposed five distinct environmental layers: microsystems, mesosystems, exosystems, macrosystems, and chronosystems (Figure 1.6). To adequately understand human development, he emphasized, we must understand a person’s experiences both within and between the various layers of the larger ecological system.

Bronfenbrenner’s ecological model posits a multilayered concept of environment as essential for the study of developmental psychology. He believed that the major contribution of this model would be its ability to describe the relationships among various environmental factors, each of which has a longstanding place in the science of development:

Figure 1.6: Bronfenbrenner’s ecological model

Bronfenbrenner’s theory emphasizes the belief that we must understand a person’s experiences both within and between the various layers of the larger ecological system.

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Section 1.6 Bronfenbrenner’s Ecological Model of Human Development

Most of the building blocks in the environmental aspect of the theory are familiar concepts in the behavioral and social sciences. . . . What is new is the way in which these entities are related to each other and to the course of development. In short . . . what is presented here is a theory of environmental interconnections and their impact on the forces directly affecting psychologi- cal growth. (Bronfenbrenner, 1981, p. 8)

Bronfenbrenner’s model has had an enduring impact on the field of developmental psychol- ogy because it advanced a broader concept of developmental science that challenged the dom- inant, relatively narrow perspectives of the field. For example, developmental psychology has produced an enormous body of research examining the relative influence of, and interaction between, nature and nurture. Nature perspectives on development give precedence to inher- ent biological and genetic factors. In contrast, nurture perspectives emphasize environmental factors and socialization. Bronfenbrenner criticized these dominant paradigms for focus- ing disproportionately on individual factors and not imbuing environmental factors with the same nuance, depth, and meaning.

Bronfenbrenner’s Environmental Layers There are five environmental layers in Bronfenbrenner’s ecological model: microsystems, mesosystems, exosystems, macrosystems, and chronosystems. Microsystems are character- ized by meaningful and sustained face-to-face interactions. Here, individuals are active agents and play a significant role in shaping their own environment and lived experience. Microsys- tems that comprise parents, family, peer groups, schools, and neighborhoods typically have a direct and immediate impact on an individual’s development.

Mesosystems consist of the relationships between two or more people within the microsys- tem but not necessarily including the individual. For example, a child is the individual at the center of the microsystem. The child’s parent interacts with the child’s teacher at a parent- teacher conference. Another example is a client who is in the hospital. The client’s wife speaks to their children to convey the issues the client is facing. The client’s wife also speaks with the client’s supervisor regarding the illness and the client’s inability to work due to being hospitalized. This element of the ecological model also explores how various environments mutually reinforce, contradict, or otherwise link aspects of human development. For example, rules, norms, and expectations learned at home with the family may or may not be compatible with those learned in a school environment, a church environment, or a peer-group environ- ment. The lens of the mesosystem helps examine these interactions.

Exosystems are environments and contexts that tangentially affect human development and are largely out of the individual’s control. Unlike microsystems, an individual is a more passive member of an exosystem, on which he or she cannot exert significant influence. A quintessential example of an exosystem is a parent’s workplace. Positive events (e.g., a salary increase or promotion) or negative occurrences (e.g., termination or workplace demands that require significant time away from home) in a parent’s workplace likely will have a profound impact on the child’s development, but the child has essentially no ability to influence those workplace events.

Section 1.7 The Person-in-Environment Classification System

Macrosystems are larger cultural and social-structural elements of the environment that shape human development. Macrosystems include such characteristics as ethnicity, socioeco- nomic status, and cultural norms. Macrosystems also encompass large-scale matters, such as whether the individual is growing up in a developed or developing country, as well as that country’s national and international political dynamics.

An analysis of chronosystems helps developmental psychologists understand how profound events sometimes affect a person’s development over time. Throughout life, elements of vari- ous layers of the ecological system can change dramatically. For example, a parent’s employ- ment situation may change, the family may experience divorce or remarriage, and the nation the family belongs to may go to war or cease its involvement in a global conflict.

Science and Policy Bronfenbrenner’s work on developmental psychology profoundly influenced the relationship between science and public policy. Traditionally, one of the main goals of science has been to produce and disseminate knowledge in an attempt to inform public policy decisions. How- ever, Bronfenbrenner (1981) argued that the relationship between science and public policy should be ongoing and reciprocal:

Furthermore, an ecological approach to the study of human development requires a reorientation of the conventional view of the proper relation between science and public policy . . . basic science needs public policy even more than public policy needs basic science [emphasis original]. Moreover, what is required is not merely a complimentary [sic] relation between these two domains but their functional integration. Knowledge and analysis of social policy are essential for progress in developmental research. (p. 8)

It seems that Bronfenbrenner was advocating that science play a role in public policy before, during, and after policy initiatives. From this perspective, scientific studies do inform public policy decisions, but that is only the first step. The results of public policy initiatives help guide the next wave of scientific studies. Thus, science and policy have an ongoing and mutu- ally beneficial relationship. In this way, science should have significant and dynamic influence in shaping public policy to best serve individuals and communities.

Among his many contributions, Bronfenbrenner’s ecological model influenced the way devel- opmental psychologists study environmental factors, making it more nuanced. His testimony before the U.S. Congress led to the development of the Head Start program, and his work strengthened the relationship between the scientific method and public policy.

1.7 The Person-in-Environment Classification System The person-in-environment (PIE) classification system was created by Mary Ellen Richmond, who wrote Social Diagnosis in 1917 (History of Social Work, 2013). This method of assessing adults is the basis for today’s social work practices. Note that this classification system is used with adults only, in contrast to the developmental theories we just learned about, which are applied to people of all ages.

Section 1.7 The Person-in-Environment Classification System

While PIE is commonly used by social workers, the concepts are very useful in the health care field as well. This method of assessment allows the practitioner to (a) determine the cli- ent’s strengths and weaknesses, (b) determine which intervention is best suited to the client/ patient, (c) identify and enlist the person’s coping mechanisms, (d) measure the success of the intervention, and (e) follow the outcomes over a period of time (Karls & Wandrei, 1994).

A PIE evaluation is based on the following four factors:

Factor I: Social Role

This factor identifies the client’s social roles and where there are problems in those social roles. Social roles encompass relationships with partners, family, friends, coworkers, and/or community (Karls & Wandrei, 1994). The social worker will determine the severity of the issue and identify strengths and weaknesses in the scenario. From the health care worker’s perspective, this is an opportunity to identify whether there are relationship concerns and how those issues affect the client. For example, if the client is being released from care (e.g., leaving a nursing home after rehab or being released from the hos- pital after surgery), the health care professional will determine who is avail- able to aid the client. Part of this evaluation step requires understanding how much assistance the spouse/partner, family member, or friend in question can realistically provide. When the needs of the client are greater than the person assisting can manage, it is customary for the doctor to order visiting nurses for the more demanding steps of care.

Factor II: Environmental Role

The social worker will interview the client and may visit the home of the client to determine if there are environmental concerns (Karls & Wandrei, 1994). Other health care professionals, such as occupational therapists or registered nurses, may join in this visit. For example, the health care workers may deter- mine whether a client with dementia lives in a neighborhood that is close- knit and cares for one another or if the client is isolated from neighbors. The team members might also discover that there are physical barriers in the home, such as steps (if the client can no longer go up and down stairs) or rugs throughout the home (which may be a tripping hazard for a client who is using crutches, a cane, or a walker).

Factor III: Mental Health

This factor is a diagnosis by a health care professional. The social worker incorporates the details into the report and uses the information when deter- mining Factor I and Factor II (Karls & Wandrei, 1994).

Factor IV: Physical Health

This factor is also a diagnosis by a health care professional. The social worker incorporates the details into the report and uses the information when deter- mining Factor I and Factor II (Karls & Wandrei, 1994).

Section 1.8 The Five Stages of Grief

In evaluating the social role, the social worker may identify the circumstances that created the health issues for the client. This information identifies ways in which the health provid- ers can help the patient overcome the challenges and successfully improve health outcomes. The PIE perspective looks at the stressors in the person’s life, the coping mechanisms used to manage those stressors (which could be positive or negative), what the person’s strengths are, and who is available to provide support in making lifestyle changes to reach a healthy outcome (History of Social Work, 2013).

Sources of stress can include immediate and extended family, caring for children or depen- dent elders, the neighborhood where the person lives, work/school, city/state/federal laws, personal debt load, and more. Stressors and support can both come from the same person or circumstance. For example, immediate and extended family can cause stress, yet they can also be the support the patient needs to improve his or her health. Those same people might be the ones who taught the patient the poor coping mechanism(s) that brought the patient to a place of illness (Karls & Wandrei, 1994). Examples of this include parents and/or adult caretakers who engage in self-destructive habits (e.g., excessive drinking, drug use, violence, and so forth) instead of appropriately managing their emotions. The child watches the parent turn to the use of self-destructive behaviors and learns that this is the way to cope with emo- tions and difficult life experiences.

Strengths are what the patient does well for themselves. The health care provider needs to know what strengths the patient has because these can be improved upon as well (History of Social Work, 2013). Health care providers can help the patient use the resources available within their immediate circle of family and friends, neighborhood, and community, as well as their own spiritual faith and beliefs, intellectual level, abilities, motivations, and fears, to bal- ance and overcome the stressors. The health care provider works with the patient and his or her support group to create a plan that allows the patient to achieve the health goal (History of Social Work, 2013).

1.8 The Five Stages of Grief In 1969, Elisabeth Kübler-Ross wrote a book called On Death and Dying. In it, she described the five stages of grief: denial, anger, bargaining, depression, and acceptance (see Figure 1.7). Grief can occur for many reasons, such as divorce, being fired from a job, being diagnosed with a chronic illness, and—of course—death. The five stages of grief are familiar and rela- tively straightforward emotions. However, how these emotions are expressed can differ from person to person.

Section 1.8 The Five Stages of Grief

Cultural norms often influence how a person grieves, regardless of the reason for grieving. Some people will openly share their feelings, while others will hide their emotions and grieve in private. Some will grieve with their family and friends but not in front of people who are not part of their closest circle of support. In the stages of grief, denial and anger are usually experienced early, though it is important to understand that grieving is not linear (Vickers, 2005). People will go from one emotion to another and then regress, or they may skip one of the emotions entirely. Much of a person’s success in reaching acceptance of their new normal comes from their inner strength, spirituality, and the social support they have from family and friends.

Some of the cross-cultural reactions to grief are seen in the mental and physical realms of the griever. For example, while writing about grief in the workplace, Margaret Vickers states that the following responses to grief may be seen:

mental lapses, decreased energy, difficulty in making decisions, anxiety, help- lessness, inability to concentrate, preoccupation, social withdrawal and weep- ing . . . Also, cognitive disorganization, disturbance of identity, a disrupted sense of future, a long-term search for meaning, dysphoria, pining, or yearn- ing, loneliness, negative health effects, mortality, disrupted social functioning and isolation, role disruptions, and difficulties with new relationships. (2005, p. 2)

Figure 1.7: Kübler-Ross’s five stages of grief

According to Elisabeth Kübler-Ross, these are the five stages of grief: denial, anger, bargaining, depression, and acceptance. People often experience these stages when faced with major life changes, including a negative health diagnosis, relationship changes, job/career changes, and death.

3. Bargaining

4. Depression

2. Anger

1. Denial

5 stages of grief

5. Acceptance

Section 1.9 Chronic Illness and Disability: An Evidence-Based Approach

As discussed earlier, people experience the emotions of grief as described by Kübler-Ross when there is any major loss in their life. This includes loss of health, which is how we will apply the concepts going forward in this textbook. In the case of chronic illness, knowing that the abilities one once had are likely gone, or may be gone in the future, is a difficult reality to accept. This encompasses personal abilities ranging from hobbies and self-care to the ability to continue in one’s career. Losing a job is a huge loss to anyone, but to lose a job because of a chronic illness is a double loss. Many people get their sense of identity from their career, so they are lost when that career ends. If they are physically or mentally limited because of the chronic illness, they know they may not be able to find another job in the same career field.

Grief counseling is helpful in managing the feelings that come with a chronic diagnosis. Coun- seling allows the person to express their feelings and learn coping mechanisms for their cir- cumstances. This often brings a great deal of relief, because counseling allows the person to see and use their power and autonomy.

1.9 Chronic Illness and Disability: An Evidence-Based Approach

Evidence-based approaches have become a critical element of health care. Researchers and medical practitioners perform scientific studies as well as case studies of treatment meth- ods and outcomes. The methods of treatment that repeatedly provide consistent and posi- tive outcomes in patients become the preferred approach for treatment because the research supports those methods as being the most effective. The details are shared via journal arti- cles and continuing education classes. Additionally, insurance companies restrict payment for treatments that do not meet current industry standards. The evidence-based practices (EBP) movement applies a relatively recent theoretical concept to various health care sys- tems (e.g., the United Kingdom’s National Health Service). However, the EBP movement is firmly grounded in a legacy of practices and research from a variety of related disciplines.

Web Field Trip

Learn more about managing grief through mindfulness at the MindBodyMed website: (http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/). Mindfulness allows people to focus on their present situation and circumstances. It helps people to accept what is, let go of what was, and not worry about the future.

You can learn about coping strategies, finding support, and where to seek help for chronic illness at the website of the American Psychological Association (APA): (http://www.apa.org /helpcenter/chronic-illness.aspx).

Critical-Thinking Questions 1. How can health care employees assist patients with a new chronic illness diagnosis? 2. How can health care employees assist patients who long ago received their

diagnoses but continue to face changes and greater illness in their lives?

http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/

http://www.apa.org/helpcenter/chronic-illness.aspx

Section 1.9 Chronic Illness and Disability: An Evidence-Based Approach

An additional factor that contributed to the rise of EBP is the pressure for cost containment in health care. As demonstrated earlier in this chapter, health care costs have risen signifi- cantly during the last half century. As practitioners gather evidence on potential treatment regimens, costs can be one factor of many that are examined. For example, in June 2010, the United Kingdom’s National Institute for Health and Care Excellence (NICE) created formal guidelines for the prevention and treatment of alcohol-use disorders. When developing their policy recommendations, NICE “considered a variety of types of evidence including evidence of effectiveness (including cost effectiveness), fieldwork data and comments from stakehold- ers and experts” (NICE, 2010, p. 1).

Among experts, debate continues about how to determine the best evidence and how to put that evidence into practice (or even whether to rely on EBP in the first place). However, the modern medical field will likely continue to make empirical evidence paramount in health care decision-making. For a critical review of EBP in the United Kingdom’s National Health Service, where it has been widely applied, see the article “Per- spectives on Evidence-Based Practice” by David Marks (https://www.researchgate.net /publication/305004502_Perspectives_on_Evidence-Based_Practice).

An Evidence-Based Approach Defined The EBP approach, in contrast to the opinion-based practice approach, emphasizes closely connecting the scientific research process to the delivery of services to patients and health care consumers. The Institute of Medicine (IOM) defined EBP as “the integration of the best research evidence with clinical expertise and patient values” (as cited in APA, 2018, para. 1). Similarly, the APA defined EBP (as applied to its specific discipline) as “the integration of the best available research with clinical expertise in the context of patient characteristics, culture, and preferences” (2018, para. 1). The EBP approach seeks to emphasize the scientific method in creating a more “rational approach” to contemporary health care (Tilburt, 2008, p. 721).

The ultimate goal of the EBP movement is to use the tools of science to uncover, understand, and ultimately deliver the most effective treatments and interventions. For example, in 2002, the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) developed a treatment manual grounded in EBP. Scientific research and evidence guided the organiza- tion’s recommendations on the cycle of aggression, socialization in the family, the cognitive restructuring model, and other elements of the treatment plan. SAMHSA’s manual affirms that promoting public health requires a critical understanding of established scientific research methodologies (Reilly & Shopshire, 2002).

Research Methodologies Giddens et al. (2011) defined science as “the use of systematic methods of empirical investi- gation, the analysis of data, theoretical thinking, and the logical assessment of arguments, to develop a body of knowledge about a particular subject matter” (p. 23). However, experts are actively debating what constitutes the best data, the most powerful theoretical paradigms, and the most valid and reliable research methodologies. Although the EBP movement is an established component of modern medicine, there are ongoing disputes about the most effec- tive ways to uncover, select, and understand evidence, which is the central feature of EBP.

https://www.researchgate.net/publication/305004502_Perspectives_on_Evidence-Based_Practice

Section 1.9 Chronic Illness and Disability: An Evidence-Based Approach

Experimental research designs (ERDs) are powerful methodologies that are regularly used and highly valued within the natural sciences, medicine, and the social sciences (such as psychology). Experiments typically take place in highly controlled environments that give researchers the ability to test a hypothesis. A hypothesis is a preliminary, informed assump- tion or educated guess about the topic or comparison that is central to the study. For example, a hypothesis might predict that a new drug will reduce the blood pressure of patients with prehypertension, or that an inventive counseling program will measurably reduce hostility in subjects with anger management difficulties.

When testing a hypothesis, researchers study the impact of an independent variable on a dependent variable. An independent variable is the treatment variable that is manipulated by the researchers and is the one of primary importance in the study. In contrast, a dependent variable is an outcome measure or variable that is used to test the impact or effect of the independent variable. For example, a study’s independent variable could be the use of a new prehypertension medication, and it could measure blood pressure as a dependent variable.

In a traditional scientific experiment research design, participants in the study are divided into two groups: a treatment (experimental) group and a control group. Usually, each group is of equal size, and individual participants are assigned to one or the other, using a random selection procedure, or random sample, where people are chosen for a study from a larger group and everyone has an equal chance of being chosen. The treatment or experi- mental group comprises subjects who actually receive the drug or intervention related to the independent variable. In contrast, the control group does not receive the intervention related to the independent variable. However, the control group is critical to the experiment, because it allows researchers to compare outcomes between the groups to assess and isolate the effect and impact of the independent variable. It is important to note that in many studies, the control group receives the current standard treatment against which the novel treatment is being tested; control groups do not typically receive a true placebo. To further reduce any bias from affecting the results, many research studies are blinded as to which group receives the treatment; that is, the subjects are unaware of the treatments received. In a double-blind study, neither participants nor experimenters know which participants are receiving the novel treatment.

Medical researchers often use randomized clinical trials (RCTs), which are widely consid- ered the most effective and rigorous research methodology (Ottenbacher & Maas, as cited in Chan et al., 2009). How are RCTs different from ERDs? In fact, they are essentially the same process. Both divide the participants into groups where one group gets a treatment that has a known outcome and the other gets a treatment that has an unknown outcome. The second group is studied to determine the effects of the studied treatment. The difference is that an RCT uses an ERD to test new drugs, treatments, and therapies. This design used by medi- cal researchers is usually preferred over observational or qualitative studies, which use less precise methods of sampling and studying (e.g., observation, case studies, interviews, and subjective interpretations of experiences). ERDs apply to a wider range of study topics, such as studies that look at the outcome of written exams taken by different groups of students.

Although RCTs and other rigorous experiments may be the most powerful method for devel- oping evidence central to EBP, they are likely insufficient. Given that many types of treatments and rehabilitation regimens are administered within a wider society, such experiments may not be sufficient because they do not include psychological and sociological factors. Moreover,

Section 1.9 Chronic Illness and Disability: An Evidence-Based Approach

many practitioners determine best practices by relying on either traditional ways of treat- ing disease or less-than-systematic, anecdotal evidence from other professionals (Joelving, 2011). Thus, many experts contend that mixed-method approaches and “evidentiary plural- ism” are more effective ways to sift through evidence related to health and medical issues in the larger context of society (Tucker & Reed, as cited in Chan et al., 2009, p. 5). In addition, the EBP movement seeks to apply evidentiary findings from scientific studies to patients (or health care consumers) in the context of the real world.

Application to Patients An EBP approach to health care is part of a larger movement in modern medicine that exam- ines the broader context in which medical decisions take place. Ultimately, its efficacy depends on its successful implementation with patients or consumers of health care services. The EBP movement expects much of medical practitioners—not only to critically understand contem- porary evidence in their area of expertise but also to create treatment regimens that integrate related evidence.

The challenges of successfully implementing the EBP approach have been analyzed in depth by Jon Tilburt, an assistant professor of medicine for the Mayo Clinic. In exploring the clini- cal application of the EBP approach, Tilburt observed that the modern medical community generally agrees about the value and potential efficacy of the evidence-based model and that a broad understanding of the social context of the patient is critical for success. However, how to implement this broader understanding is the subject of much debate among experts. Tilburt (2008) discussed the complexities of applying EBP:

It is appealing to think that the evidence-based decision making implies that we follow whatever the evidence says. However, the evidence is rarely clear, and even when it is clear, circumstances and values must be reconciled with the evidence. (p. 724)

Tilburt argued that the successful implementation of the evidence-based model in a clinical context requires synthesizing four contexts for decision-making. He created a Venn diagram to demonstrate how clinical practitioners can accomplish this (Figure 1.8).

Section 1.9 Chronic Illness and Disability: An Evidence-Based Approach

Tilburt’s Decision-Making Environment In Tilburt’s clinical decision-making scheme, social and organizational circumstances remind practitioners to take into account practical issues when making evidence-driven decisions. For example, an evidence-driven decision must evaluate whether a sufficient number of staff members are available at all levels to manage the number of patients. Population values cover patient preferences and, more broadly, may include ideological, religious, and personal value systems. The research evidence part of decision-making requires that clinicians have a sophis- ticated, up-to-date understanding of relevant empirical evidence. Practitioners must thor- oughly understand the strengths and weaknesses of the existing evidence and apply critical thinking when making decisions. In addition, they should “remain mindful of the quality and limitations of the evidence” (Tilburt, 2008, p. 723).

Social and organizational circumstances, population values, and research evidence are three contexts that should be carefully considered by clinical practitioners. Indeed, they underpin the most critical element of Tilburt’s model for EBP: judgment.

Clinical Judgment Judgment is “exercised by experts to appropriately weigh and integrate the various decision- making elements” (Tilburt, 2008, p. 721). Judgment may be the most important—and most challenging—element of applying EBP. As evident by its position in the Venn diagram, judg- ment means critically evaluating relevant evidence that takes into account all contexts of the evidence-based decision. For example, in a given case, a practitioner might evaluate the cur- rent medical journals (research evidence), consult with the patient and the family (popula- tion values), and consider the resources necessary to deliver a particular treatment (social and organizational circumstances) before exercising judgment and ultimately deciding on a course of action.

Figure 1.8: Tilburt’s evidence-based decision-making environment

According to Tilburt, the clinical application of the evidence-based approach involves decision-making in four contexts.

Research evidence

Decision-making context

Judgment

Social and organizational circumstances

Population values

Section 1.10 Social Support Systems and Chronic Illness and Disability

Empowering Patients and Clinicians Ultimately, it is hoped that an EBP approach to health care will offer a more objective, guiding paradigm, encouraging patients or consumers to exercise their agency in the medical process and empowering clinicians to make better decisions. After all, the scientific method is intended to be objective. Allowing carefully gathered scientific evidence to guide medical treatment and rehabilitation decisions for patients is considered the most fair-minded procedure. More- over, taking various social and institutional contexts into consideration when making deci- sions is intended to increase the role of patients and allow them to be more active partici- pants in their care (Tilburt, 2008).

1.10 Social Support Systems and Chronic Illness and Disability

As we will see throughout this text, social support systems are of paramount importance. These net- works of people and institutions mitigate the harms of chronic illness and disability for individuals, fam- ilies, and society. For example, a variety of contem- porary approaches to rehabilitation emphasize the role of social support in helping the patient avoid depression, improving quality of life, and enhanc- ing the efficacy of treatment regimens. Although experts still debate the precise definition of social support, it “is often used in the broadest sense to explain any process through which social relation- ships might promote health and well-being” (Gott- lieb & Underwood, as cited in Chan et al., 2009, p. 153).

Web Field Trip

Please visit the website of the Cochrane Collaboration, a group that is “working together to provide the best evidence for health care.” Navigate to the following Cochrane Collaboration website and choose Podcasts or Featured reviews from the links on the page to learn more about health care updates and health care news: (https://www.cochrane.org/evidence).

Critical-Thinking Questions 1. How does the Cochrane Collaboration exemplify an evidence-based approach to

health care? How does Cochrane’s approach empower patients and consumers? 2. Do you think that Cochrane’s is a more just approach to health care? Why or why

not?

diego_cervo/iStock/Getty Images Plus Research has revealed that social support systems are an important factor in our health and well-being.

https://www.cochrane.org/evidence

Section 1.10 Social Support Systems and Chronic Illness and Disability

Dr. Sheldon Cohen, professor of psychology at Carnegie Mellon University, offered insight and critical analysis of the role that social support networks play in health, chronic illness, and dis- ability. He defined social support as “a social network’s provision of psychological and mate- rial resources intended to benefit an individual’s ability to cope with stress [emphasis original]” (Cohen, 2004, p. 676). There are various types of social support systems; examples include hospice care, church groups, caring neighbors, senior citizen activity centers, and extended family.

Research on social support delineates three subtypes of social support. First, instrumental support is tangible and practical, such as helping an ill person go to the grocery store, pre- paring food, assisting with activities of daily living, or providing financial assistance. Second, informational support is a broad concept that includes any assistance, advice, or guidance that seeks to relay information to help an individual manage the challenges associated with illness and disability. Third, emotional support “involves the expression of empathy, car- ing, reassurance, and trust and provides opportunities for emotional expression and venting” (Cohen, 2004, p. 677).

Cohen argued that social support can facilitate positive health outcomes by mitigating the negative effects of stress. However, social support is only one of several social network factors that can shape health outcomes. Although positive social support is crucial, social integration into positive groups likewise can have measurable and sustained psychological benefits (see Durkheim’s [1897/1951] study of suicide). Avoiding or at least minimizing negative interac- tions (relationships with high potential to create additional stress) can also facilitate positive health outcomes (Cohen, 2004). Social network mechanisms have been shown to facilitate positive health outcomes, but more research is needed to understand what types of patients and what sorts of interactions will most consistently lead to positive results.

Like Bronfenbrenner, Engel, Tilburt, and others from the biopsychosocial school of thought, Cohen reaffirmed the importance of locating individual medical, biological, and psychologi- cal challenges within the larger context of society. By emphasizing the importance of social groups and other social support systems, Cohen reinforced the underlying philosophy of the biopsychosocial and ecological approaches to investigating health dynamics in modern society.

Section 1.10 Social Support Systems and Chronic Illness and Disability

Case Study: Émile Durkheim and Suicide

French sociologist Émile Durkheim (1858–1917) helped pioneer the field of sociology and is widely considered one of the most influential thinkers in the history of the discipline. His seminal research on suicide vividly demonstrated that social problems are often caused by psychological and sociological factors. Although the research methods he used would likely not hold up to the scientific standards of the modern era, Durkheim’s results reshaped how social problems are analyzed. His cross-national investigation of suicide remains influential in the study of the relationship between individual psychology and society.

Durkheim’s analysis of suicide challenged the prevailing wisdom of the time that this tragic act was simply the by-product of individual psychological factors (what we would call psychiatric disorders, such as depression). Rather, Durkheim determined that social groups are of paramount importance in understanding an individual’s suicide. His limited cross- national examination of suicide showed that certain groups had higher or lower rates of suicide. Specifically, he concluded that Protestants were more likely to commit suicide than Catholics. In addition, he found that men were more likely to commit suicide than women. Single people without children were more likely to commit suicide than married individuals with children. Lastly, those who were generally more knowledgeable were more likely to commit suicide compared with those deemed less knowledgeable.

The differences Durkheim observed between these groups led him to argue that a lack of socialization and integration into a community were key contributors to suicide. Durkheim posited that those of the Catholic faith might be more likely to have a group- oriented relationship with God, facilitated by group-based religious rituals and rites of passage. By comparison, he believed that the Protestant faith perhaps facilitated a more individualized relationship to religion. In addition, he observed, married individuals with children were more integrated with other individuals and groups on a daily basis. Lastly, in his view, knowledge might be facilitated largely by individual pursuits such as reading, conceptualizing, and reflecting. Moreover, those with more knowledge might be more aware of social problems. In combination, Durkheim concluded that socialization, social groups, and degrees of integration were critical factors in understanding suicide; individual psychological factors alone were insufficient.

Anomie, a word popularized by Durkheim, refers to an individual’s state of mind when society’s norms, values, and expectations have lost their power to organize people’s behavior, when those norms have broken down or failed to be transmitted as a result of inadequate socialization. This situation, in turn, results in personal alienation and a loss of ideals. In his analysis, Durkheim conceptualized four different types of suicide based on different dynamics that can produce anomie.

Suicide undoubtedly has psychological origins. However, Durkheim’s study emphasized that a person’s interaction with the social and cultural environment may influence the likelihood of developing suicidal tendencies. Although Durkheim’s study has been criticized on a variety of methodological and rhetorical grounds, it remains a staple of contemporary sociology. Moreover, Durkheim’s conclusions about suicide reaffirm that socialization, social groups, and society’s norms and values all exert influence on events that, at first glance, seem to be purely personal and psychological.

Summary and Resources

Chapter Summary This chapter introduced fundamental theoretical paradigms that guide our interdisciplin- ary investigations of health, chronic illness, and disability in the United States. Readers were given a macro-level snapshot of health in the contemporary United States. In addition, health measures were examined in terms of subpopulations, that is, by gender, race, ethnicity, and socioeconomic status.

The bulk of this chapter was dedicated to describing theoretical frameworks that guide mod- ern health care (for an overview, see Table 1.1). First, the traditional biomedical model of health care was contrasted with the more contemporary biopsychosocial model. The biopsy- chosocial model posits a more holistic approach to modern medicine by taking into consider- ation not only biological factors but psychological and sociological factors as well. According to this perspective, the lived experience of micro-level illnesses and disabilities are pro- foundly shaped by a series of complex and overlapping social factors. Thus, proponents of this approach believe that a multilevel, interdisciplinary approach will lead to the most effective system of care, treatment, and rehabilitation for patients.

Bronfenbrenner’s ecological model of human development was presented. Bronfenbrenner reshaped the field of developmental psychology by locating an individual’s development over the life span within a series of layered environmental experiences. The ecological model com- prises five distinct environmental layers: microsystems, mesosystems, exosystems, macrosys- tems, and chronosystems. Collectively, these shape an individual’s development over a lifetime.

Additionally, the PIE classification system was reviewed. This system allows providers and social workers to examine the stressors and strengths in the patient’s life. These can then be used in the collective to create a plan with the patient that allows him or her to achieve the health goal.

Next, we examined the five stages of grief as described by Kübler-Ross. The emotions of denial, anger, bargaining, depression, and acceptance were explored as they apply to a diagnosis of a chronic illness.

The EBP approach was defined and explored, with an emphasis on its reliance on scientific research methodology and ERDs. Proponents argue that this evidence-driven approach enhances the power of patients, health care consumers, and decision-makers and improves the efficacy of interventions.

Finally, social support networks play a role in health, chronic illness, and disability. There are various types of social support systems, including hospice care, church groups, caring neigh- bors, senior citizen activity centers, and extended family.

The following key theoretical frameworks give the student an analytical toolkit that can be used to analyze a series of case studies throughout the text (Table 1.1). Taken together, this theoretical framework emphasizes critical concepts in the contemporary investigation of health, chronic illness, and disability: reliance on objective evidence, an interdisciplinary approach, and prioritizing the most effective health care regimens (i.e., best practices) for the patient and for society.

Summary and Resources

Table 1.1: Key theoretical frameworks: An overview

Biopsychoso- cial model

Ecologi- cal model of human development

Evidence- based prac- tices (EBP) movement

Person-in- environment (PIE) classifi- cation system

Five stages of grief by Kübler- Ross

Founding theorist

Dr. George L. Engela

Dr. Urie Bronfenbrennerb

Various Mary Ellen Richmondc

Elisabeth Kübler-Rossd

Year(s) of origin

Engel’s article was published in 1977.a The model was developed in the 1990s.e

1970s and 1980sb

early 1990sf 1917c 1969d

Perspective challenged

Biomedical modela

Theories of developmental psychology focusing dis- proportionately on individual factorsb

Opinion-based or traditional- practice approachg

N/A N/A

Focus Perspective on health and wellnessa

Developmental psychologyb

Delivery of health care services to patientsf

Identifying the strengths and chal- lenges faced by the person to develop intervention optionsc

Emotions of grief for major life changesd

Conceptual summary

Framework examines indi- vidual, biologi- cal health and illness, along with attendant psychologi- cal dynamics, within the larger socio- logical context of society.a

Framework situ- ates an individu- al’s development throughout life within overlap- ping layers of environmental experience. Each of the five distinct environ- mental layers— microsystems, mesosystems, exosystems, macrosystems, and chronosys- tems—contains prescribed norms, val- ues, roles, and expectations.b

Framework emphasizes closely con- necting the scientific research process to the delivery of services to patients and health care consumers, as well as the combination of research evidence, clini- cal expertise, and patient- specific factors.f

Framework examines the individual’s challenges and coping mechanisms, as well as the strengths available that can assist in completing an improvement goal.c

Framework examines the emo- tions of grief people may experi- ence when they face major life changes, such as diagnosis of a chronic illness, loss of job, or death of a loved one.d

Sources: a: Engel, 1977; b: Bronfenbrenner, 1981; c: History of Social Work, 2013; d: Vickers, 2005; e: Borrell-Carrió et al., 2004; f: Tilburt, 2008; g: American Psychological Association (APA), (2018).

Summary and Resources

Key Terms anomie Defined by classic sociological theorist Émile Durkheim as a loss of guid- ing values for individuals. It occurs within a state of social instability, in which norms, values, and expectations have broken down.

biomedical model of health Traditional perspective in Western medicine that treats illness and disease as biological disorders and symptoms that are best addressed by objective treatments grounded in medical science and research. Its weakness is that it largely omits consideration of psychological and sociological contexts.

biopsychosocial model A theoretical per- spective on health and wellness developed by Dr. George L. Engel. It involves examin- ing individual biological human health and attendant psychological dynamics within the larger context of society.

blinded A type of experiment in which the subjects (and, in double-blind studies, the researchers as well) do not know what treat- ment is being given to each group.

chronosystems One of five elements of Bronfenbrenner’s ecological model of human development; it examines events as they evolve over the life span.

control group The group of subjects in an experimental research design that does not receive the treatment or intervention related to the independent variable. Using control groups for comparison, researchers can compare outcomes of the experimental group.

cultural bias The preferences of specific cultures, which include preferences relating to health and health care.

culture The way of life of a particular people, especially as shown in their ordinary behav- ior and habits, their attitudes toward each other, and their moral and religious beliefs.

data Factual information gathered and ana- lyzed via different research methods.

dependent variable In a scientific experi- ment, an outcome measure used to test the impact or effect of the independent variable.

ecological model of human development A model that situates an individual’s devel- opment throughout life within layers of environmental experience.

emotional support A subtype of social support that “involves the expression of empathy, caring, reassurance, and trust and provides opportunities for emotional expression and venting” (Cohen, 2004, p. 677).

ethnicity A group of individuals who share common cultural beliefs, norms, values, and practices.

evidence-based practices (EBP) Accord- ing to the IOM, “the integration of best research evidence with clinical expertise and patient values” (as cited in APA, 2005, p. 1).

exosystems One of five elements of Bron- fenbrenner’s ecological model of human development; it refers to larger environ- ments that are largely out of the control of the individual but affect that person’s devel- opment nonetheless.

experimental research designs These schemes seek to test a treatment or inter- vention by carefully comparing an experi- mental group (which receives the treatment) with a control group (which does not receive the treatment) in a carefully controlled environment.

gender The cultural and social expectations and meanings associated with being male or female in society.

Summary and Resources

holistic health care Perspective of care that, emphasizing the well-being of mind, body, and spirit, seeks to integrate a variety of complementary preventive and treatment programs over the life span.

hypothesis A preliminary, informed assumption or educated guess that is the basis for designing a scientific experiment, which will support or fail to support it.

independent variable The variable in a scientific experiment that can be manipu- lated by the researchers and is of primary importance in the study. In a clinical trial, this is most often a drug treatment or other intervention.

individual payers People who pay for the cost of health care out of pocket and do not use health insurance.

infant mortality A statistical measure that represents the number of infants who die in the first year of life out of every 1,000 live births in a given population.

informational support A subtype of social support, this broad concept includes any assistance, advice, or guidance that seeks to relay information to help an individual man- age the challenges associated with illness and disability.

instrumental support A subtype of social support that is tangible and practical, such as helping an ill person go to the grocery store, preparing food, assisting with activi- ties of daily living, or providing financial assistance.

life expectancy A statistical projection of how many years a person is likely to live, based on the average age of mortality of a given group or population.

life span The maximum age that an individ- ual human being has reached before death within a given group or population.

macrosystems One of five elements of Bronfenbrenner’s ecological model of human development; it refers to larger cultural and social-structural elements of the environment that shape human development.

maternal mortality A statistical mea- sure that represents the number of women who die within 42 days after the end of a pregnancy.

mesosystems One of five elements of Bron- fenbrenner’s ecological model of human development; it examines the relationships between two or more microsystems.

microsystems One of five elements of Bronfenbrenner’s ecological model of human development; it refers to individual and small-group, interactive environments in which individuals are active agents and play a significant role in shaping their own environment and lived experience.

Patient Protection and Affordable Care Act Sweeping health care reform law passed by the U.S. Congress in 2010. It expanded access to health coverage for uninsured Americans and dramatically changed the U.S. health care industry. As of 2018, some aspects of the law have been altered by the Republican-majority Congress and the Trump administration.

race A group of individuals who are distin- guished by some perceived common physi- cal characteristics.

random sample Where people are chosen for a study from a larger group and everyone has an equal chance of being chosen.

randomized clinical trials (RCTs) An experimental research design used in the medical field to test new drugs, treatments, and therapies.

Summary and Resources

Critical-Thinking and Discussion Questions

1. Recall Gusfield’s definition of a “social problem.” What do you think are the most important social problems facing modern American society? What do you think are the most important social problems facing the world community?

2. Reflect on Dr. David Miller’s discussion of social justice. If social justice is about fair access to resources in society, what goods, services, and other resources do you think are most important?

3. Will an evidence-driven approach to health care help create a better health care sys- tem? Will it be more just? More objective? Why or why not?

4. The biopsychosocial model relies on the integration of biology, psychology, and sociology. Describe and discuss any barriers or other problems that might impede interdisciplinary collaboration.

5. In your opinion, what types of data will be the most valuable in EBP? Why? 6. Apply sociological imagination to an injury or illness that you have sustained at

some point in your life. How was your injury or illness affected by larger macro-level, social-structural, and historical factors?

7. Recall Durkheim’s study of suicide in the late 1800s. Despite the dated research methodology used, would any of his findings hold true today? Why or why not?

science A body of knowledge based on collection and analysis, both empirical and theoretical, of data and observations.

sex The physical and biological differences between men and women.

social class A group that, at a given time, has a similar level of economic and social status, especially income, wealth, and power.

social location A concept encompassing personal identifying factors that may or may not change over the lifetime. For example, race, culture, ethnicity, gender, sexual orien- tation, ability, income, job status, and family status are all part of an individual’s social location.

social problems Issues produced by con- ditions in society that should be changed or ameliorated for the good of society.

social support systems In the context of illness, a network of people or institutions through which social relationships promote health and well-being and provide psycho- logical and material resources to help an individual cope with stress.

socialization A sociological perspective on development and identity formation that emphasizes social learning, adaptation, and integration into society throughout life.

sociological imagination An understand- ing of how larger social forces have an impact on the lived experiences of indi- viduals, both private and public. A concept pioneered by C. Wright Mills.

treatment (experimental) group In a scientific experimental research design, the group of subjects that receives the treatment or intervention (the independent variable).