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2 Defining Chronic Illness and Disability

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

• Compare the medical and biopsychosocial models of disease and disability.

• Be able to identify the biological and sociocultural contributions through the life stages in development of chronic disease.

• Discuss the influence of the biopsychosocial model in the management of disease.

• Examine how the meso-level environment influences level of disability.

• Examine macro-level policies regarding classification of disability, feasibility of treatment measures, and health and disability in terms of the WHO’s International Classification of Functioning, Disability and Health (ICF).

• Examine the evolution of medical understanding of how the human body functions and external impacts on health.

• Identify the four stages of the rehabilitation cycle and apply ICF Core Sets to it at each stage.

• Understand the role of health care administrators in patient outcomes.

Section 2.1 Introduction: Contrasting the Medical and Social Models of Disease and Disability

2.1 Introduction: Contrasting the Medical and Social Models of Disease and Disability

We begin this chapter by examining the difference between disease and disability. Disease is defined as a deviation from normal biological functioning in a living organism. The anat- omy (structures) or the physiology (function) changes and damages are incurred from those changes. Disease can be a short-term condition, such as an infection (e.g., pneumonia), a condition present from birth (e.g., heart defect), or a chronic condition that causes a perma- nent change in structure, function, or both structure and function (e.g., diabetes or cancer). According to the Americans with Disabilities Act (ADA), disability is a physical or mental impairment that substantially limits one or more major life activities for an individual (U.S. Equal Employment Opportunity Commission, 2008).

The biomedical model understands that both disease and disability—the common cold, the flu, a broken leg, cancer, diabetes, or hypertension—are a deviation from normal biological functioning. For example, in the common cold, a rhinovirus obstructs respiratory passages; in the flu, viral infection causes such symptoms as elevated temperature, aches, and pains. A broken leg is unable to serve its normal purpose; in cancer, cells are replicated without control; in diabetes, the body fails to produce insulin; and in hypertension, blood pressure is higher than what is deemed normal.

Disease and disability, however, are not characterized only by biology. As Rosenberg (1992) has argued, they are also framed by culture and society. At an individual (micro) level, disease and disability can cause stress and psychological trauma. At an intermediate (meso) level, disease and disability can strain relationships with others (e.g., the need to accommodate a diseased individual can disrupt the normal learning or work environment). Finally, at a soci- etal (macro) level, if it is prevalent enough, disease and disability can become a rationale for implementing changes in public policy. (See section 1.6, Bronfenbrenner’s Ecological Model of Human Development, and also the Key Terms section in Chapter 1 for definitions of these categories.)

In the video The Social Model of Disability, a blind student at McGill University contrasts the medical and social models of disease and disability (Colton, 2012); you can view the video at (https://www.youtube.com/watch?v=g0gxRyDmBxI). Based on purely biological criteria, a person who cannot see is obviously disabled; however, if society creates an appropriate envi- ronment (e.g., by supplying braille textbooks), then a blind person can be a productive mem- ber of that society. The view of disease and disability as purely biological limitations from normal functions is characterized as the biomedical model, whereas the view that society has a duty to eliminate barriers so that all individuals can function in their chosen activities is characterized as the social model.

Health care professionals must understand how the biological and socially constructed dimensions of disease and disability interact. Standardized definitions and classification schemes have been developed to accommodate these twin dimensions; these uniform stan- dards ensure that people with diseases and disabilities are treated fairly—as individuals, in the workplace, and in the legislative and policy arenas. This chapter surveys both the bio- logical and psychosocial understandings of disability and disease. We also discuss the leading definitions and classification systems used to assess these issues in the contemporary health care arena.

https://www.youtube.com/watch?v=g0gxRyDmBxI

Section 2.2 Chronic Disease Through the Life Span

To understand the biological basis for social, psychological, and physical problems, the fol- lowing ideas will be discussed:

1. The distinction between acute and chronic disease 2. How chronic disease can become manifest throughout the life cycle 3. How biological malfunctioning can be accorded special legal status when classified as

a disability

Briefly, an acute condition tends to have a specific cause, a definite time of onset, and an end—either in complete recovery or in death. Some examples of acute conditions include the common cold, the flu, or a broken leg. Acute conditions are generally caused by injury or by exposure to an infectious or toxic agent, though they may also have less discrete causes, as in the case of a heart attack. Symptoms of acute conditions are distinct and have a rapid onset, but they go away with appropriate treatment. Unless the condition kills the individual, medical treatment (e.g., a properly set bone) usually leads to a complete recovery. Metaphorically, acute diseases follow a comparatively straightforward, narrative structure: they have a clear beginning, middle, and end.

By contrast, a chronic condition, such as can- cer, hypertension, or diabetes, has the following characteristics:

1. It is often associated with multiple risk factors rather than a single, unambiguous cause.

2. It can involve decades of exposure to risk factors prior to onset of the disease.

3. It must be managed over the course of the patient’s remaining life rather than being absolutely cured.

It is important to understand that disease has come to be associated less with a specific, acute medical event and more with attendant disabilities that require ongoing management.

2.2 Chronic Disease Through the Life Span The life span has several well-recognized stages: prenatal fetal development, birth and infancy (the first year of life), childhood, adolescence, young adulthood, middle age, and older adult- hood. Although the stages can be understood in purely biological terms as a phenomenon of aging, they can also be interpreted socioculturally through the lens of interpersonal interac- tions. Each stage has its “normal” attributes, both biologically and socioculturally, in the sense

domin_domin/E+/Getty A broken bone is an example of an acute condition because it has a specific cause, has a time of onset, and ends with complete recovery.

Section 2.2 Chronic Disease Through the Life Span

that there are typical development patterns followed by most individuals. For most individu- als, earlier ages (prior to middle age) do not include chronic disease and disability. From middle age onward, however, chronic disease and disability become an increasingly “normal” part of the aging process.

Fetal Development Through Infancy Biologically, chronic disease can develop in utero either because of genetic inheritance or because of exposure to teratogens (environmental agents that produce birth defects). Such conditions are referred to as congenital (existing at or present from birth). Genetic disor- ders can produce disabilities that are visible at birth (e.g., Down syndrome), or the disabling results of such abnormalities may not manifest until later in life (e.g., Huntington’s disease; see Chapter 9). Teratogens can likewise produce disabilities that are evident at birth. For example, if a mother contracts rubella (German measles) during pregnancy, the child is at higher risk of being born deaf and for developing chronic neurological diseases such as cere- bral palsy (Centers for Disease Control and Prevention [CDC], 2017).

Childhood In childhood, individuals begin to develop fundamental skills necessary for survival, such as communication and how to interact with others. The child learns to explore the world and begins to realize his or her own limitations. In this process, it is important for the parent to strike a “balance between encouraging initiative and setting limits consistently” (Falvo, 2009, p. 17). If the child has a chronic illness, however, this normal developmental process can be impeded. For example, some congenital conditions may inhibit development of both language and interpersonal skills. Also, treatment for a chronic condition may require extensive hos- pitalization, which can deprive the child of socialization with peers, further hindering the normal developmental process.

Adolescence and Young Adulthood In adolescence, individuals need to establish independence from their parents. They often rebel against parental or other authority and increasingly seek validation from their peer group. With the awakening of sexuality, it is typical for them to increasingly focus self- consciously on their body image and being attractive to others (Falvo, 2009). As in childhood, these normal patterns of adolescent psychosocial development can be impeded by the pres- ence of chronic disease or disability. For example, if disease prevents the interaction with peers or affects the adolescent’s appearance negatively, then personal development may be delayed. Also, the ongoing need for treatment may prevent the emergence of a distinct per- sonal identity apart from the disease. Conversely, typical adolescent rebellion can sometimes exacerbate disability if the rebellion takes the form of forgoing recommended medical treat- ment or taking unhealthy risks (Falvo, 2009).

In young adulthood, individuals usually become productive members of society by entering the workforce. They begin to establish intimate relationships and accept social responsibility

Section 2.2 Chronic Disease Through the Life Span

Middle Age and Beyond In middle age, individuals are usually well established in careers and long-term relationships. They may be dealing with the challenges of launching their own children into the world and caring for aging parents. By this point, people are becoming more aware of their own mortal- ity. When faced with chronic illness or disability, these individuals may opt for early retire- ment to help manage their condition. At any age, a chronic condition often puts a strain on the person’s life partner and other immediate family members. These developments may pro- duce stress, both for the person who is disabled and for the immediate family (Falvo, 2009). When a disability occurs to people in the middle-age range, they lose years of work, which has a significant financial impact on their retirement years.

Finally, for older adults, limitations associated with chronic disease and disability often become part of the facts of life. Because many such individuals are retired, the challenge of managing work while coping with disability is likely a moot issue. But the effect of the dis- ability on the family is still significant. Often, because of enormous strain on their caregiving family members, older adults are forced to leave their homes and enter retirement communi- ties, assisted living facilities, or long-term care. Such long-term care may also put financial stress on the family.

As this brief overview illustrates, chronic disease and disability have different effects at dif- ferent stages in the life cycle, and in all stages such conditions emerge within a specific envi- ronmental context. In its biological aspect, disability clearly fits the biomedical model as an

(Falvo, 2009). In this early stage of adult life, chronic illness may inhibit the successful launch- ing of a career, family, or both. Although workplaces are legally mandated to accommodate those with disabilities, within limits, those changes are usually limited to low-cost and easy adaptations for employees who need physical accommodations. There is no corresponding mandate to aid people with disabilities in developing intimate relationships or improving self-image, and sustaining intimate relationships may be difficult.

Web Field Trip

Learn more about the ADA and the current laws that organizations must follow when hiring new personnel (and how employees who incur disabilities while employed must be accommodated) at (https://www1.eeoc.gov//eeoc/publications/ada17.cfm?render forprint=1).

Critical-Thinking Questions 1. What are the requirements that employers must follow when hiring? 2. What accommodations, if any, must an employer make to support an employee with

disabilities? 3. What are the legal concerns about asking a prospective employee if they are

disabled? 4. What protections, if any, are available for people with short-term ailments that affect

their ability to complete their job duties?

https://www1.eeoc.gov//eeoc/publications/ada17.cfm?renderforprint=1

Section 2.2 Chronic Disease Through the Life Span

attribute of an individual. However, disability has also been constructed as a legal designation to prevent discrimination based on disability status. This designation is an illustration of the social model of disability.

Disease That Leads to Disability: The Creation of a Legal Construct Some chronic conditions do not interfere with the performance of normal, day-to-day activi- ties (hypertension, for example, is often controlled through daily medication). However, when chronic conditions do begin to impede daily activities (especially work-related ones), they are often formally designated as a disability, which is both a legal construct and a biologi- cal condition.

In 1990, the United States formally recognized that individuals with disabilities should be accorded legal protections by passing the Americans with Disabilities Act (ADA). Accord- ing to the ADA (2009), the term disability means “(A) a physical or mental impairment [emphasis added] that substantially limits one or more of the major life activities of . . . [an] individual; (B) a record of such impairment; or (C) being regarded as having such an impair- ment” (Section 12102).

The purpose of the Act was characterized as follows:

(1) to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities;

(2) to provide clear, strong, consistent, enforceable standards addressing dis- crimination against individuals with disabilities;

(3) to ensure that the Federal Government plays a central role in enforcing the standards established in this Act on behalf of individuals with disabilities; and

(4) to invoke the sweep of congressional authority, including the power to enforce the fourteenth amendment and to regulate commerce, in order to address the major areas of discrimination faced day-to-day by people with disabilities (ADA, 2009, Section 12101).

Considering this law’s implementation and enforcement, we see how the medical and social models of disability interrelate at the micro, meso, and macro levels. To illustrate, the defi- nition of disability in the statute relates to biological abnormality at the micro level of the individual, meaning the individual has the disability (the biomedical model). However, the ADA was passed by Congress to prevent social discrimination at the macro level (the social model). Finally, the concrete effects of the law manifest in work and public environments (e.g., public buildings), where individuals with disabilities are accommodated by interme- diate (meso) institutions. At the level of implementation, therefore, the medical and social models intersect.

Examples of ADA accommodations are ramps at entryways for people who cannot climb stairs, doors that are 36 inches wide or larger, wheelchair-accessible bathrooms with support rail- ings, braille letters and numbers on wall directories for those who are blind, and visible ele- ments of alarms for people who are deaf or hard of hearing (U.S. Department of Justice, 2010). This is not an exhaustive list of accommodations that are required in buildings that are open

Section 2.3 The Biopsychosocial Model: Evolution of Medical Understanding at the Micro Level

to the public. You can learn more at (https://www.ada.gov/regs2010/2010ADAStandards /Guidance2010ADAstandards.htm).

In addition to the ADA, other organizations have developed formal definitions of disability, including the American Medical Association (AMA) and the WHO. In recent decades, however, these definitions have increasingly turned away from the view that the biomedical model and the social model are strictly opposed; instead, disability is viewed as a result of the interac- tion between biology and the environment.

2.3 The Biopsychosocial Model: Evolution of Medical Understanding at the Micro Level

Historically, views of disability have tended to fol- low trends in medical philosophy. According to the longstanding Hippocratic view, medicine comprises three things—the physician, the disease, and the patient. Implicit in this formulation is an individu- alistic focus where the primary concern of the phy- sician (and medical treatment) is on the individual patient. This approach was further reinforced by developments in biomedicine beginning in the 17th century. In that century, the philosopher René Des- cartes (1596–1650), among others, developed a view known as the mechanical philosophy, which saw the entire universe (including the human body) in purely mechanistic terms; in this view, the human body was seen as a machine governed by fixed laws.

Over the course of the next three centuries, a school of thought within biomedicine increasingly looked at disability in these essentially engineering terms. This view held that disability or disease resulted from physical, chemical, or biological abnormalities that caused the machine (body) to function improp- erly. Consequently, both biomedical research and the treatment of disability increasingly focused on repairing the inner workings of the human body without significant regard for external environmen- tal factors (McKeown, 1979).

Other physicians, however, were concerned with the health effects of the Industrial Revolu- tion of the 18th and 19th centuries. They hoped to reduce disease and death by documenting and initiating “social engineering” solutions to urban problems, such as alleviating poverty, providing adequate drinking water, disposing of sewage, and so on. These reformers laid the foundation for what became the field of public health (Fee & Porter, 1992).

Photos.com/Getty Images Plus Philosopher Rene Descartes contributed to the concept of mechanical philosophy, which viewed the entire universe in purely mechanistic terms.

https://www.ada.gov/regs2010/2010ADAStandards/Guidance2010ADAstandards.htm

Section 2.3

Epidemiology, which is the study of the causes of death as well as of groups of people who are diagnosed with different types of diseases, initially began with Hippocrates. Major advancements were made in the 1600s by John Graunt, a hat-maker who published mortality statistics. “This publication was the first to quantify patterns of birth, death, and disease occurrence, noting disparities between males and females, high infant mortality, urban/rural differences, and seasonal variations” (CDC, 2012a, para. 3). It was further advanced in the 1800s by William Farr, who developed the methods of collecting data still used today, and John Snow, who studied cholera outbreaks in London. Snow is considered “the father of field epidemiology” because he noted certain areas of London had higher incident rates of cholera (CDC, 2012a, para. 5). In his study, Snow noted which city water pumps were used by the residents who got cholera. Ultimately, he identified one specific water pump that was causing the illness. His findings were shared with the city municipal officials and the pump handle was changed, which ended the cholera outbreak (CDC, 2012a).

In the late 19th century, the germ theory of disease was established, and medical education was reformed with a heavy focus on a narrow understanding of internal biological processes rather than broad social reform and public health concerns. For many, medicine seemed poised to embark on a “golden age” based on the discovery of various antibiotic “wonder drugs” and an ever-greater comprehension of how the human body functioned mechanisti- cally (Brandt & Gardner, 2000).

By the mid-20th century, however, the epidemiological focus on understanding disease in more population-based, sociological, and environmental terms again became increasingly prominent (Susser, 1985). Symptomatic of this change was the 1959 book Mirage of Health by noted microbiologist René Dubos. In this book, Dubos emphasized how an environmental understanding of disease could be traced back to the Hippocratic writings and argued that the ability to eradicate disease-causing microbes was illusory (1959).

By the 1970s, this environmental and sociological focus was used both to explain the rise of chronic disease—a historical change that has been called the epidemiological transition (Omran, 1971)—and to question the assumption that clinical medicine led to disease reduc- tion. There was a shift in the most common causes of death from either a bacterial or viral infection to chronic disease. Specifically, in 1976, the epidemiologist Thomas McKeown deliv- ered a series of lectures on the role of medicine. Using statistics, he demonstrated a decline in mortality and a corresponding increase in longevity over the course of three centuries. But he questioned whether the therapeutic interventions of clinical medicine were the primary cause. Rather, he noted that improved nutrition, better hygiene, and smaller family sizes prob- ably played a greater role (McKeown, 1979). In 1977, the McKeown thesis was the subject of an entire issue of the Milbank Quarterly, a leading health policy journal (see, e.g., McKinlay & McKinlay, 1977, as listed in the References section). For McKeown, clear policy implications followed from the statistical evidence: Society needed to redirect more resources toward the external (e.g., environmental, behavioral) factors that contribute to health and well-being, rather than toward clinical medicine.

In a landmark article published in 1977, physician and psychiatrist George Engel also ques- tioned the reductionistic focus on the human body as if it were nothing but a machine. While acknowledging that medicine had made enormous strides with the biomedical approach, Engel (1977) argued that medicine should “include the psychosocial without sacrificing the enormous advantages of the biomedical approach” (p. 131). In other words, he advocated

The Biopsychosocial Model: Evolution of Medical Understanding at the Micro Level

Section 2.3

a “both/and” rather than an “either/or” strategy. In his view, medical practitioners (and patients) should recognize how the management of disease required them to understand the interaction between biomedical and psychosocial variables.

For example, in approaching the management of a disease, the physician should consider both objective evidence (e.g., laboratory tests) and patient/societal perceptions. Using the examples of diabetes and schizophrenia, Engel emphasized that to establish the presence of disease, the physician needs to establish not only the biochemical defect but also the psy- chological aspects of how that individual experiences illness; the latter would be structured fundamentally by social and cultural dynamics. Engel observed that “variability in the clinical expression of diabetes as well as schizophrenia, and in the individual experience and expres- sion of these illnesses, reflects as much these other [psychological] elements as it does quan- titative variations in the specific biochemical defect” (1977, p. 132). Ultimately, Engel hoped that this biopsychosocial model would transform the physician-patient interaction into a dynamic system in which the individual patient’s perceptions would be fully integrated into the process of disease management. (For more on Engel’s thoughts, see section 1.4, The Bio- psychosocial Model of Health Care, in Chapter 1.)

Although the biomedical model has not been com- pletely overturned, the biopsychosocial model is now the more widely known of the two. It is taught in most medical schools, and most medical practi- tioners have heard the term. Operationally, it has transformed the physician-patient interaction from a monologue, in which the physician tells the pas- sive patient what is wrong and how to proceed with treatment, to a dialogue enabled by patient- centered interviewing. In this style of communica- tion, the health care provider questions the patient to elicit patient-specific information so that treat- ment can be tailored to that individual’s unique cir- cumstances. More recently, this approach has been extended to the entire health care system in a move- ment that is known as relationship-centered care. This technique encourages two-way communication at all levels, including between medical staff, administrators, and other support personnel (Smith, 2002). In other words, there is now an attempt to apply the biopsychosocial approach to all levels of human interaction—micro, meso, and macro. In our upcoming discussion of the WHO, we will see how it is being applied in the macro context.

If Engel outlined the broad contours of the biopsychosocial model, recent commentators have suggested more specific ways to make it operational. As Borrell-Carrió, Suchman, and Epstein (2004) observed, biopsychosocial clinical practice should require that physicians develop the following skills:

1. Self-awareness 2. Active cultivation of trust 3. An emotional style characterized by empathetic curiosity 4. Self-calibration as a way to reduce bias

rawpixel/iStock/Getty Images Plus The biopsychosocial model focuses on patient-centered interviewing, in which information provided by the patient is used to customize treatment.

The Biopsychosocial Model: Evolution of Medical Understanding at the Micro Level

Section 2.4 From Disability to Rehabilitation From the Meso Perspective

5. Educating the emotions to assist with diagnosis and forming therapeutic relationships

6. Using informed intuition 7. Communicating clinical evidence to foster dialogue, not just the mechanical applica-

tion of protocol (p. 576)

Although some of these skills are self-explanatory (e.g., cultivation of trust), others require elaboration. Specifically, the authors characterized self-calibration as the skill of learning “how . . . decisions might be biased by the race and sex of the patient . . . and also the tendency to close the case prematurely to rid oneself of the burden of attempting to solve complex problems” (Borrell-Carrió et al., 2004, p. 580). In other words, the authors believed that indi- viduals should recognize how their built-in assumptions might bias conclusions and should self-consciously guard against this. Also, the practitioner should realize that human beings (including physicians) make decisions based on a combination of empirical evidence and emotions and that someone can learn to use emotions wisely (e.g., tolerating uncertainty) just as someone can learn to process new information—this is what they meant by “educat- ing the emotions” (Borrell-Carrió et al., 2004, p. 580). Although the Borrell-Carrió et al. list is more detailed than Engel’s theory, the general thrust is the same: Recognizing the patient’s experience of disease and disability is central to providing successful care.

Today, the most likely criticism of Engel’s formulation of the biopsychosocial model is that it lacks nuance and is too narrow—especially about what constitutes science. In Engel’s for- mulation, the biomedical model assumed that physical and chemical laws operating inside the body were the essence of medical science. But in the last 20 years, the field has embraced a new, population-based approach called evidence-based medicine, which argues that sci- entific theories are developed from population-based research. This approach focuses pri- marily on the social group rather than the individual. (For a more detailed discussion of this approach, see section 1.9, Chronic Illness and Disability: An Evidence-Based Approach, in Chapter 1). Thus, the contemporary scientific model might consider a range of areas—from evidence-based population studies, to biochemistry internal to the living organism, to psy- chological issues affecting the patient. In other words, just as Engel advocated expanding the conversation to include the patient’s point of view (or voice), supporters of evidence-based medicine likewise call for an expansion of the conversation of what constitutes the science of medicine. Given the relevance of population-based studies/population surveys for the policy-making world, this additional voice will likely continue to inform patient care, even among those who practice the biopsychosocial model.

2.4 From Disability to Rehabilitation From the Meso Perspective

Although the person with a disabling condition experiences the microsystem tangibly every day, the extent to which a particular condition is expressed as a disabling condition may be determined as much at the macro- or meso-system level as by the nature of the local environment. (Brandt & Pope, 1997, p. 73)

Section 2.4 From Disability to Rehabilitation From the Meso Perspective

This statement from an Institute of Medicine (IOM) report captured the fundamental trans- formation of the definition of disability that has occurred in recent decades. Namely, the defi- nition emphasizes the environment as the key aspect for determining whether an individual in a particular physical and social setting is disabled. To see how fundamental this change in focus has been, it is useful to examine how the AMA has defined disability in the past. In 1958, the AMA Committee on Medical Rating of Physical Impairments declared that “competent evaluation of permanent impairment requires adequate and complete medical examination, accurate objective measure of function, and avoidance of subjective impressions and nonmedi- cal factors [emphasis added] such as the patient’s age, [gender] and occupation” (as cited in IOM, 1997, p. 63). Like Descartes from three centuries earlier, this view conceived of disability as a static attribute internal to the human body, which was viewed in mechanistic terms. The external environment was deemed irrelevant.

In the early 1960s, the U.S. Social Security Administration commissioned a study to reevalu- ate the nature of disability. The result was a framework developed by S. Z. Nagi. Nagi’s views have come to be known as the functional disablement model of disability, which involves four interrelated factors: pathology, impairment, functional limitation, and disability (Nagi, 1965). For Nagi, pathology referred to abnormalities at the cellular level, which prevented an organism from returning to its normal state, that is, health. This pathology would produce impairment in the form of some altered physiological or psychological result for the indi- vidual (e.g., arthritis). This impairment could lead to a functional limitation in the ability to perform standard tasks (e.g., difficulty walking or standing, in the case of arthritis of the legs). This functional limitation, in turn, could be characterized as a disability if it inhibited the performance of socially recognized or expected tasks (Chan, da Silva Cardoso & Chronnister, 2009, p. 25; Jette, 2006). Nagi summarized this relationship between the individual and the social environment by characterizing disability as follows:

[a] limitation in performing socially defined roles and tasks expected of an individual within a sociocultural and physical environment. These roles and tasks are organized in spheres of life activities such as those of the family or other interpersonal relations: work, employment, and other economic pur- suits; and education, recreation, and self-care. Not all impairments or func- tional limitations precipitate disability, and similar patterns of disability may result from different types of impairments and limitations in function. Fur- thermore, identical types of impairments and similar functional limitations may result in different patterns of disability. (Nagi, as cited in Jette, 2006, p. 728)

Nagi’s model has become the basis for understanding disability as a relationship between the individual and the environment. However, the nature of that relationship has subsequently been refined. For Nagi, the disability still resided in the individual—a product, ultimately, of pathology. Later models, by contrast, have viewed the environment as playing a more active role in which the influence can occur in both directions. For example, in a model developed by the IOM in 1991, the physical and social environments were seen as independent risk factors, which means that a person is automatically at a higher risk for a disease simply because they have one factor present in their lives that contributes to the level of disability (Brandt & Pope, 1997). An example of an independent risk factor is a smoker, who is auto- matically at higher risk for heart disease because they are a smoker.

Section 2.4 From Disability to Rehabilitation From the Meso Perspective

In 1997, the IOM developed a new model illustrating the enabling-disabling process that further accentuated the role of the environment. Specifically, the organization argued that it was no longer sufficient to think of the environment only in negative terms—that is, as a risk factor for disability. Instead, the environment could also be thought of as a potential enabling factor that permitted the integration of the individual into society (Brandt & Pope, 1997). Further, lifestyle and behavior were considered to be part of the cluster of transitional factors that contributed (or did not contribute) to disability. In the IOM’s model of disability,

transitional factors are the generic term for a risk factor or an enabling factor that allows an individ- ual to move from disability to health or vice versa. Finally, the model focused on quality of life (QOL) as the primary outcome variable of interest. As the report observed, “The state of ‘disability’ does not appear in this model since it is not inherent in the individual but, rather, a function of the interaction of the individual and the environment” (Brandt & Pope, 1997, p. 68).

Although biological characteristics are inherent aspects of an individual, disability is not; instead, disability derives from the particular relationship between an individual and his or her environment (Brandt & Pope, 1997).

In the 1997 IOM report Enabling America, the fac- tors that made up an individual’s environment were characterized as either social-psychological or physical.

Psychological and social environmental factors include the following:

• Discrimination • Access to health and medical care • Appropriate care • Access to technology • Culture • Employment • Family • Economy • Community organizations • Access to social services • Traits and personality factors • Attitudes and emotional states • Access to fitness and health-promoting activities • Education • Spirituality • Independence

George Doyle/Stockbyte/Getty The environment plays a role in disability. Designing for accessibility enables people with disabilities to participate more fully.

Section 2.4 From Disability to Rehabilitation From the Meso Perspective

Physical environmental factors include the following:

• Architecture • Transportation • Climate • Appropriate technology • Geography • Time (Brandt & Pope, 1997, p. 72)

This broader view of disability as a two-way by-product of the individual-environmental interaction lends itself to discussion in terms of micro, meso, and macro factors. For example, we can ask: At which level is each of these potential environmental factors most influential? Although the language enabling factor was not used in the ADA, the idea that it represents— that the environment should be altered to minimize a person’s disability—was clearly one of the ADA’s primary motivations.

Although the IOM has fleshed out the various facets of the environment’s role in disability, the lifestyle and behavioral factors of disability have been articulated by Jette (2006). As this research indicates, the broad range of activities that might be affected by disability includes the following:

• Basic activities of daily living (BADL), including behaviors such as basic personal care;

• Instrumental activities of daily living (IADL), including activities such as preparing meals, doing housework, managing finances, using the telephone, and shopping;

• Paid and unpaid role activities, including occupational, parenting, grandparenting, and student roles;

• Social activities, including attending church and other group activities and socializ- ing with friends and relatives; and

• Leisure activities, including sports and physical recreation, reading, and distinct trips (Jette, 2006, p. 728).

Section 2.4 From Disability to Rehabilitation From the Meso Perspective

Case Study: Deafness in American Culture

The role of the environment in determining disability is clear when examining deafness in contemporary American society. At Gallaudet University in Washington, DC, the premier institution of higher learning for the deaf and hard of hearing in the United States, a meso- level culture and community have arisen among individuals who share this attribute. At Gallaudet, students worry about term papers and finals, future careers, and romances. Except for their partial or total hearing loss, they are indistinguishable from other college students. Based on purely biological criteria, anyone who is deaf or hard of hearing has a disability, but this unique social environment has become an enabling factor that effectively eliminates the experience of disability while the students are on campus.

When these students graduate, however, they must decide whether to enter a hearing world or stay in their own deaf subculture. If they enter the hearing world, their limitations in communication must be accommodated by the larger culture, or they will face exclusion from it. Alternatively, if they stay in their deaf subculture, they can continue to use its enabling factors to their advantage. Regardless of their choice, their biological attributes do not change; if they choose to transfer to a different social environment, however, this will create a new individual-environmental dynamic in which their lives must be renegotiated through the lens of their hearing disability.

The disability of deafness must also be renegotiated in light of technological changes. In 1985, the cochlear implant was developed, which offered the possibility for certain deaf individuals to regain (or receive for the first time) the ability to hear. This technology, although curative, also became controversial. Many within the deaf community felt that its widespread introduction would pose a threat to the deaf culture that had been built up over the years. The deaf community’s opposition to cochlear implants was also a reaction to the notion that hearing is what someone should strive for. In 2000, the controversy surrounding this technology was the subject of a well-received documentary entitled Sound and Fury, which chronicled one deaf family’s struggle to decide whether their children should receive this implant.

The example of deafness indicates how difficult it can be to sort out the individual- environmental relationship that shapes disability—especially at the meso level of school and work. Does integrating people with hearing disabilities into the dominant, hearing culture of the United States entail respecting the legitimacy of deaf culture, or does it entail trying to use technology (e.g., a cochlear implant) to cure a physically determined, underlying disability? That this is a debatable question vividly illustrates how deafness has a sociocultural as well as a biological component.

Lokibaho/iStock/Getty Images Plus A unique culture with its own language, American Sign Language has developed around individuals who are deaf.

Section 2.5 The Macro Perspective of Disability at the National and International Levels

2.5 The Macro Perspective of Disability at the National and International Levels

Disability must also be addressed as an issue of public policy—at both the national and inter- national levels. Although the definition of disability may be the subject of negotiation at the micro and meso levels—as the preceding deaf and hard-of-hearing case study illustrates—the policy arena requires uniform standards of how to classify an individual as disabled so that disability policies can be administered equitably. The difficulty arises from the need for such standardization to be reconciled with the increasingly dynamic understanding of the concept.

Quality-Adjusted Life-Years and Disability-Adjusted Life-Years Two concepts that have been useful in creating health care policy and implementing new interventions are quality-adjusted life-years (QALYs) and disability-adjusted life-years (DALYs). Both concepts are used to evaluate the economic feasibility of treatment measures that improve the QOL for people who live with a chronic disease or disability. Regardless of the form of health care coverage available, possible treatments for conditions and diseases vary in cost. The formulas used in QALY and DALY are used to determine where the money available is best spent. Essentially, the outcomes are the same, but the ways that QALY and DALY are measured and calculated to reach those outcomes are different (see Table 2.1).

Table 2.1: QALY versus DALY comparison

QALY DALY

Established 1970sa Established 1996b

No disability = 1.0a Death = 0

No disability = 0b Death = 1.0

• QALY measures years lived at perfect health— called a unitc

• Used at the national levelc • Impairment or disability rating is applied, which

lowers the numberc • 55% decrease in QOL = 0.45 on QALY scalec • Outcomes without interventions are determinedc • Outcomes with all interventions (older and new

intervention being measured) are determinedc

• DALY measures both mortality (early death) and morbidity (years of disability due to disease)d

• Gender is a factor of measurements due to differ- ent life expectanciesd

• Used to measure disease burden at the national level, which is then compared to the global measurementsd

• Must be measured for each type of disease; used for comparison of best use of moneyd

• Each disease is given a severity rating—called a disability weightd

• Disability weights are listed, shown as a mean number for both with treatment and without treatmentd

continued

Section 2.5 The Macro Perspective of Disability at the National and International Levels

QALY DALY

DALY = YLL + YLDb YLL = years of life lost YLD = years of life with a disability YLL = N x Lb N = number of deaths L = standard life expectancy at age of death (the average life span for the person based on gender, ethnicity, and country)b YLD = I x DW x Lb I = number of incident cases DW = disability weight L = average duration of disability DW: A formulary is used to give a mean disability rate to treated and untreated diagnosesb

• Calculate all benefits of the intervention (increase in QOL, increase in years lived)c

• Determine the cost of new intervention versus the number of people who will benefit from the interventionc

• Determine the cost to society for each potential outcomec • intervention with improvementc • intervention with no improvementc • intervention with decrease in healthc • no intervention at allc

• Will the person be able to continue or return to working?c

• Will the person’s health decline?c • Will the person need daily assistance?c

What is the cost of additional health care that will be needed?c

• Average age of early death is determinedd • Average duration of disability is determinedd • DA (disability adjusted): Life expectancy of

healthy person minus average number of years lived with partial or full disability is determinedd • 10 years at 50% disability = 5 DALYsd

• LY (life years): Life expectancy of healthy person minus the average age of death of individuals with the disease = # of DALYsd • 75-year average life expectancy of healthy

person; death occurs at 60 = 15 DALYsd • Add the disability adjusted + life adjusted years

= DALY • 5 + 15 = 20 DALYs

• Apply intervention details (increased number of years lived and lowered number of years living with a disability or fewer problems due to dis- ability)d • 50% disability for four years = 2 DALYsd • 75-year average life expectancy of healthy

person minus intervention-affected death, age of 65 = 10 DALYsd

• 10 + 2 = 12 DALYsd • So, the health benefit of the intervention in this

scenario is 8 DALYsd

QALY expresses the results as a gaina DALY expresses the results as a lossb

Sources: a: Rios-Diaz, Lam, Ramos, Moscoso, Vaughn, Zogg, & Caterson, 2016; b: Sarker, 2015; c: Sharma, 2013; d: Philip R. Lee Institute for Health Policy Studies, 2014.

Both approaches seek to provide an objective means for comparing therapeutic interven- tions. If one intervention relative to its alternatives increases the number of QALY for an indi- vidual or decreases the number of DALY, then that intervention should be implemented (Gold, Stevenson, & Fryback, 2002) (Weinstein, Torrance, & McGuire, 2009).

Table 2.1: QALY versus DALY comparison, continued

Section 2.5 The Macro Perspective of Disability at the National and International Levels

The WHO’s International Classification of Functioning, Disability and Health When we look at disability through the macro lens of policy formulation, the need for objec- tive measures is critical. By replacing subjective experience with quantitative measurements, more objective comparisons can be made, which is crucial when policy is being formulated. But, as noted earlier, policy is often executed at the intermediate level of the school or work- place. Consequently, it is vital for those engaged in the execution of policy to understand its broader rationale. One useful policy document in the world of health administration practice is the International Classification of Functioning, Disability and Health (ICF).

The WHO developed the ICF in 2001. In its document Towards a Common Language for Func- tioning, Disability and Health, the ICF sought to develop “a standard language and framework for the description of health and health-related states” (WHO, 2002, p. 2). Viewing disability as a dynamic process, this document focused on health and functioning rather than disabil- ity per se. In other words, instead of viewing disability and health as mutually exclusive, it focused on measuring functioning within society as a way to account for varying degrees of disability and health. As the WHO observed, “This is a radical shift. From emphasizing peo- ple’s disabilities, we now focus on their level of health” (WHO, 2002, p. 3).

The WHO believed that implementing the ICF could achieve three notable policy objectives: (a) to improve health policies, (b) to achieve better health for populations, and (c) to ensure that health systems would be cost-effective and fair (WHO, 2002, p. 5). At the national level, these goals could be seen as the primary internal objectives specific to countries. At the inter- national level, the WHO believed, the “ICF is a scientific tool for consistent internally compa- rable information about the experience of health and disability” (WHO, 2002, p. 5). The ICF is endorsed by all 191 member states of the WHO. It is used for international comparison of health care systems with a focus on improving health outcomes (WHO, 2002). The WHO envisioned the ICF being applied at the micro (individual), meso (institutional), and macro (social) levels, as set forth in Table 2.2.

Web Field Trip

QALY and DALY can be difficult to understand. Each formula measures the financial burden of disease on society. Many people who study epidemiology and biostatistics use these two measurement methods to determine which therapeutic interventions are cost-effective as well as which ones are not. The interventions that provide the greatest cost reduction and impact the greatest number of people are implemented if their financial burden falls within an acceptable range.

Explore the concepts of QALY by watching the video at (https://youtu.be/bUay9DV__G0).

Explore the concepts of DALY by watching the video at (https://youtu.be/06KZcHrtHww).

https://youtu.be/bUay9DV__G0

https://youtu.be/06KZcHrtHww

Section 2.5 The Macro Perspective of Disability at the National and International Levels

Table 2.2: International Classification of Functioning, Disability and Health: Levels of application

Level Purposes Questions addressed

Individual Assessment of individuals What is the person’s level of functioning?

Individual treatment planning What treatments or interventions can maximize functioning?

Evaluating treatment and other interventions

What are the outcomes of the treatment? How useful were the interventions?

Communication among physicians, nurses, physiotherapists, occupational therapists, and other health workers, social services workers, and community agencies

Self-evaluation by consumers How would I rate my capacity in mobility or communication?

Institutional Educational and training

Resource planning and development What health care and other services will be needed?

Quality improvement How well do we serve our clients? What basic indicators for quality assurance are valid and reliable?

Management and outcome evaluation How useful are the services we are providing?

Managed care models of health care delivery

How cost-effective are the services we provide? How can the service be improved for better outcomes at a lower cost?

Social Eligibility criteria for state entitle- ments, such as Social Security benefits, disability pensions, workers’ compen- sation, and insurance

Are the criteria for eligibility for disability benefits evidence-based, appropriate to social goals, and justifiable?

Social policy development, including legislative review, model legislation, regulations and guidelines, and defini- tions for antidiscrimination legislation

Will guaranteeing rights improve function- ing at the societal level? Can we measure this improvement and adjust our policy and law accordingly?

Needs assessments What are the needs of persons with various levels of disability impairments, activity limitations, and participation restrictions?

Environmental assessment for univer- sal design, implementation of man- dated accessibility, identification of environmental facilitators and barriers, and changes to social policy

How can we make the social and built envi- ronment more accessible for all persons— those with and those without disabilities? Can we assess and measure improvement?

Section 2.5 The Macro Perspective of Disability at the National and International Levels

By combining health conditions (disorder or disease) with contextual factors (environmen- tal, personal), the ICF attempts to synthesize the medical and social models. It does so in a way that allows disability to be analyzed from multiple points of view, and it legitimizes the biopsychosocial model as a basis for international disability policy.

The categories in the middle portion of the preceding diagram—Body Structure and Func- tion, Activity, and Participation—constitute a three-part conception of disability. Disability can be thought of as (a) a malfunction in a particular organ or body system, (b) an individual’s limitation in performing a task, or (c) a limitation in one’s ability to participate in social activ- ity. In the ICF model, multiple chapters subdivide each component of Figure 2.1. See Table 2.3 for the ICF’s key terms for describing disability and their definitions.

Among the anticipated uses of the ICF were policy development, economic analysis, interdis- ciplinary research into disability, intervention studies on similar populations, and the iden- tification of environmental factors as barriers or facilitators for activity (WHO, 2002). Sche- matically, the ICF is represented in Figure 2.1.

Figure 2.1: International Classification of Functioning, Disability and Health: Flow chart

The ICF model, illustrated here, combines elements of medical and social models to better analyze the multiple aspects associated with a health condition.

Health condition (disorder or disease)

Activity Body structure

& function Participation

Environmental factors

Personal factors

Contextual factors

Section 2.5 The Macro Perspective of Disability at the National and International Levels

Table 2.3: International Classification of Functioning, Disability and Health: Key terms for describing disability

Term Definition Examples (chapters in the ICF)

Body functions Physiological functions of body systems (including psychological functions)

• Mental functions • Sensory functions and pain • Voice and speech functions • Functions of the cardiovascular, hemato-

logical, immunological, and respiratory systems

• Functions of the digestive, metabolic, and endocrine systems

• Genitourinary and reproductive functions • Neuromusculoskeletal and movement-

related functions • Functions of the skin and related

structures

Body structures Anatomic parts of the body, such as organs, limbs, and their components

• Structure of the nervous system • The eye, ear, and related structures • Structures involved in voice and speech • Structures of the cardiovascular, immuno-

logical, and respiratory systems • Structures related to the digestive, meta-

bolic, and endocrine systems • Structures related to the genitourinary

and reproductive systems • Structure related to movement • Skin and related structures

Impairments Problems in body function or struc- ture, such as a significant deviation or loss

Activity The execution of a task or action by an individual

• Learning and applying knowledge • General tasks and demands • Communication

Participation Involvement in a life situation • Mobility • Self-care • Domestic life • Interpersonal interactions and

relationships • Major life areas • Community, social, and civic life

Activity limitations

Difficulties an individual may have in executing activities

Participation restrictions

Problems an individual may experi- ence in involvement in life situations

Environmental factors

The physical, social, and attitudinal environment in which people live and conduct their lives

• Products and technology • Natural environment and human-made

changes to environment • Support and relationships • Attitudes • Services, systems, and policies

Towards a common language for functioning, disability and health. Box on p. 10 listing the formal definitions of ICF components; Chart on p. 16 listing the chapters in the ICF. Copyright © 2002 World Health Organization (WHO). Used by permission.

Section 2.5 The Macro Perspective of Disability at the National and International Levels

The WHO’s outlook mirrors a larger trend of trying to come to terms conceptually with the epidemiological transition from a focus on infectious diseases to focusing on chronic disease. Because chronic conditions are ongoing, lifestyle and environmental aspects have to be incor- porated as part of the focus on chronic disease.

Measuring Social Participation: The Craig Handicap Assessment and Reporting Terms (CHART) and Later Measures As noted, the ICF framework does not focus on disability per se. Rather, it focuses on health, functioning, activity, and participation (involvement in life situations). In fact, the word handicap is not used. In an earlier model from 1980, the WHO drew a distinction between the following terms:

• Impairment—suboptimal functioning at the anatomical and physiological levels • Disability—the inability for a person to perform an activity at the normal human

level • Handicap—the inability of an individual to participate in society because of disabil-

ity (Hall, Dijkers, Whiteneck, Brooks, & Krause, 1998; WHO, 1980)

From this viewpoint, two individuals could have the same disability in the sense of functional impairment, but not have the same level of handicap. That is, one might be better able to form social relationships and find gainful employment than the other. To again use the example of hearing, the suboptimal functioning of the ear would be the impairment, the disability would be the inability to hear a telephone ring or know when one is being addressed, and the handi- cap would be an inability to participate in social activities that depend on sound (e.g., appre- ciating a concert). When comparing an older person who needs a hearing aid with a person who has been deaf since birth, we can say that they have the same impairment and similar disabilities in that neither can hear at a normal level. However, they have different levels of handicap, because the hearing aid permits one of these individuals to hear sounds.

The term “handicap describes the total effects and interplay of all the consequences of dis- ability: social, economic, cultural and environmental” (Whiteneck, Brooks, Charlifue, Gerhart, Mellick, Overholser, and Richardson, 1992, p. 5). According to the WHO, it encompasses the following six dimensions:

1. Physical independence: the ability to sustain a customarily effective independent existence

2. Mobility: the ability to move about effectively in his or her surroundings 3. Occupation: the ability to occupy time in the manner customary to that person’s sex,

gender, age, and culture 4. Social integration: the ability to participate in and maintain customary social

relationships 5. Economic self-sufficiency: the ability to sustain customary socioeconomic activity and

independence 6. Cognitive independence: the ability to orient oneself to his or her surroundings (WHO,

as cited in Chan et al., 2009, p. 41, and as cited in Hall et al., 1998, p. 17)

Section 2.6 Contemporary Issues in the Implementation of the ICF Model

In the late 1980s, a standardized questionnaire, based on the six WHO dimensions, was designed at the Craig Hospital for spinal cord and traumatic brain injuries in Denver, Colorado. The Craig Handicap Assessment and Reporting Technique (CHART) was one of many survey instruments that took the WHO’s lead. The original survey contained 32 questions and was designed to elicit objective, quantifiable responses from patients with a spinal cord injury, rather than being open to subjective interpretation. The questions focused specifically on behaviors rather than perceptions. Since its origination, the CHART questionnaire has gone on to be used for people with conditions such as traumatic brain injury, cerebrovascular accidents, multiple sclerosis, burns, and amputations. The questionnaire is being studied for other conditions and diseases (University of Utah, College of Health, n.d.). The questionnaire is administered multiple times over a period of years. The responses indicate improvement with adaptation or declining health with increasing disability. In 1999, a short form of the survey was developed with only 19 questions. For each dimension within CHART, there is a 100-point maximum, where 100 points indicates no disability. CHART has been tested many times for its validity (meaning the results are accurate) and reliability (meaning the results are consistent); it has also been translated into multiple languages. As with other objective measures, CHART can be used for evaluating the effectiveness of a program for the disabled.

Web Field Trip

First, visit the Craig Hospital website (https://craighospital.org/uploads/CraigHospital .CHARTManual.pdf ), which explains the CHART survey method in detail. Then, go to the Participation and Quality of Life project website (http://parqol.com/). Click twice on Quality of Life Concept (http://parqol.com/quality-of-life-concept/) to see a schematic diagram of what contributes to a person’s QOL.

Critical-Thinking Questions 1. Do you think that CHART adequately captures all aspects of a person’s QOL? 2. Can you think of other factors that might not be captured in this survey?

2.6 Contemporary Issues in the Implementation of the ICF Model

The ICF combines the biomedical model of disability with the biopsychosocial model of dis- ability (WHO, 2013). The individual’s environment is considered when determining cause of disability and how the health condition impacts the individual’s life (WHO, 2013). By establishing uniform categories for assessing disability, the ICF has become a standard refer- ence tool in the public health arena. Implementation difficulties, however, remain as various national and international organizations have tried to put this conceptual framework into operation (see “Problems of Integration” later in this chapter). In some cases, standard mea- surement tools already exist, and the ICF is seen as needless duplication. In other cases, the optimal therapy based on clinical trials has yet to be determined, making it difficult to deter- mine the appropriate intervention strategy based on the ICF. The WHO has led implementa- tion efforts through its Functioning and Disability Reference Group, which is charged with promoting the use of the ICF (Stucki & Cieza, 2008).

https://craighospital.org/uploads/CraigHospital.CHARTManual.pdf

http://parqol.com/

http://parqol.com/quality-of-life-concept/

Section 2.6 Contemporary Issues in the Implementation of the ICF Model

The Rehab Cycle Many medical specialties (e.g., psychiatry and rheumatology) have adopted the ICF in some form, and it has been extensively studied in the field of rehabilitation medicine. As Stucki and Cieza (2008) noted:

The ICF has the potential to contribute importantly to the quality of rehabili- tation care delivery. It can serve as a starting point to structure clinical assess- ment and rehabilitation management, which generally involves four steps: assessment, assignment, intervention, and evaluation. (p. 301)

These four stages have come to be known as the rehabilitation (rehab) cycle. They have been combined with the ICF with the concept of the ICF Core Sets, which are “generally agreed-on lists of ICF categories, relevant for specific diseases or for health care contexts, which can be used in clinical studies and health statistics . . . or to guide multidisciplinary assessments” (Rauch, Cieza, & Stucki, 2008, p. 330). In other words, the ICF Core Sets— disease-specific categories that describe each specific health condition—help health care providers classify patients. The questionnaire can be completed by the patient or a health care provider. It measures the patient’s current experience related to their health complaint. However, using this system to treat individual patients can be problematic, because the care team must treat a patient’s current and unique clinical conditions, including psychological issues. These conditions may require more specific and immediate interventions than pro- vided by the general model outlined in the ICF Core Set. For example, “Pain in the back” in Figure 2.3 indicates what should be done for back pain in general but does not address a patient’s particular instance of back pain.

In the ICF scheme, assessment involves determining the appropriate rehabilitative interven- tion strategy for an individual who, based on the ICF Core Set, has a degree of impairment. What is actually being assessed is the individual’s functioning state, which also identifies areas that need improvement. Thus, the ICF is an appropriate analytical tool for planning that patient’s rehabilitation in the clinic. This assessment is then recorded on administrative documents such as the ICF Categorical Profile or the ICF Assessment Sheet. These documents assess a particular patient in light of the categories in the ICF model (e.g., body function/ structure, activity, and participation). You can find a sample ICF Checklist form for clinicians at the WHO website (http://www.who.int/classifications/icf/training/icfchecklist.pdf ).

The second stage in the rehab cycle is assignment. This stage makes sure the appropriate rehabilitative intervention is applied to the unique clinical circumstances of the patient who has just been assessed. It also assigns health care professionals with the relevant expertise to help with the intervention strategy. In this endeavor, health care workers can rely on ICF Assignment Maps, which list interventions frequently administered for specific ICF catego- ries. “These maps can help to choose proper interventions for specific problems, especially for health professionals with only little [sic] clinical experience” (Rauch et al., 2008, p. 336).

In the third stage—the actual intervention—the rehabilitation team members decide pre- cisely which techniques (from the list in the ICF Assignment Map) are most appropriate to achieve the desired intervention target for the particular patient. This stage has also been standardized through the creation of the ICF Intervention Table, which lists all the specific intervention targets that have been agreed to by the rehabilitation team (Figure 2.2).

http://www.who.int/classifications/icf/training/icfchecklist.pdf

Section 2.6 Contemporary Issues in the Implementation of the ICF Model

X X

XX XXXX

X XXX

Xb28013 Pain in the back

Body posture training Adaptation of wheelchair Control of sitting position Medication

b415 Blood vessel functions at risk

Compression hosery, drugs

b420 Blood pressure function

Compression hosery

Intervention target

B o

d y f

u n

c ti

o n

s /s

tr u

c tu

re s

A c ti

v it

ie s a

n d

p a rt

ic ip

a ti

o n

E F

P F

Intervention Phys Nurse PT/ Spo

PsychOT ArchSW First value

End value

Goal value

b7101 Mobility of several joints

Passive movement 1 0 1

b755 Involuntary movement functions

Body balance training 2 0 0

b7800 Sensation of muscle stiffness

Detonisation, Stretching 1 0 0

b810 Structure of the skin - at risk

Daily inspection 0 0 0

d410 Changing basic body positions

Sit-up training 1 0 0

e1151 Assistive products: Chair cushion

Control of chair cushion –2 0 0

Knowledge Teaching, consulting, and lectures

2 2+ 2+

Acceptance/Coping of disease

Behavioral training approaches

1 0 1+

e1201 Assistive products for personal mobility: Wheelchair and adapted car

Testing of different wheel- chairs, reconstruction of car

–3 –2 –2

e155 Design, construction and building products and technology of buildings for private use: farm house

Planning and reconstruction of private buildings

–3 –2 –2

e5700 Social security services

Clarification, Organization of payments

0 4+ 2+

d4153 Maintaining a sitting position

Body balance training 1 0 0

d4200 Transferring oneself while sitting

Transfer training 2 1 1

d465 Moving around with wheelchair

Wheelchair training outdoor

3 1 1

d510 Washing oneself Assistance/Instruction 2 0 0

d520 Caring for body parts Assistance/Instruction 2 0 1

d5300 Regulating urination Assistance/Instruction 2 0 0

d5301 Regulating defecation Assistance/Instruction 2 0 0

d540 Dressing Assistance/Instruction 2 0 0

d9201 Sport Exercising different sports 4 2 2

Figure 2.2: ICF intervention table for patient rehabilitation

The use of an ICF intervention table helps standardize the decisions about the intervention methods a team will use to provide the most appropriate care.

Section 2.6 Contemporary Issues in the Implementation of the ICF Model

The table in Figure 2.2 shows the initial (“First Value”) level of various clinical conditions, the ultimate goal that the care team hopes to achieve through rehabilitative interventions (“Goal Value”), and the actual clinical outcome at the end of an intervention cycle (“End Value”). For this particular patient, who had initial pain in the back (“First Value” = 3), the ideal therapeu- tic goal would have been the complete elimination of back pain (“Goal Value” = 0). However, the actual recorded value was reduced, but not eliminated, back pain (“End Value” = 1).

As can be deduced from this example, the final stage in the rehab cycle involves evaluating whether the individual’s functioning has improved since the intervention strategy was imple- mented. This stage is standardized through the ICF Evaluation Display, which is based on the ICF Categorical Profile modified by the intervention targets (Figure 2.3). The table in Figure 2.3 displays only ICF categories for which specific interventions have been developed. The ICF Evaluation Display documents any changes in functional ability by comparing relevant values before and after intervention. Compared to the questionnaire shown in Figure 2.2, for exam- ple, the table in Figure 2.3 shows that the patient’s back pain decreased from 4—nearly the maximum value—to 2, as seen in the Evaluation (16 weeks post-trauma) column, between the initial assessment and the post-intervention evaluation. By documenting these changes in a table format, the ICF Evaluation Display “pictures at a glance the changes in the functional state after one treatment cycle and can serve as basis for team discussion” (Rauch et al., 2008, p. 339).

Problems of Integration Integrating the ICF with the rehabilitation cycle has both strengths and limitations. Among the ICF’s strengths is its greater ease of performing team-based interventions. For example, because interventions are spelled out in advance, team roles can be tailored based on indi- vidual expertise. Also, using the ICF qualifiers (the 1–4 rating system) as tools for assess- ment helps team members communicate better. Finally, the ICF Assessment Sheet permits (in theory) the subjective experiences of the patient to be recorded (e.g., “I used to do sports and want to do sports again”). However, some researchers have questioned whether these subjec- tive experiences have been fully incorporated into the current ICF model.

According to Rauch et al. (2008), the ICF model has four potential problems in a rehabilita- tion context. First, many health care workers find completing the various forms to be time- consuming and unsatisfying. Second, standardized measurement tools already exist for some but not all of the ICF categories. Consequently, to increase uniformity, more translation is needed between those categories that have been standardized and those that have not. Third, more research is needed on the interval scales themselves. Fourth, more evidence-based research studies are needed to determine the most effective interventions for many ICF cat- egories. For many categories, the optimal therapy has yet to be determined.

Research has found that to serve as a standardized measurement tool, the ICF should include all potential health and disability states. This criterion appears to have been satisfied. The ICF contains no fewer than 1,424 discrete and mutually exclusive categories, and Cieza and Stucki (2008) observed, “Taken together the ICF categories . . . cover the whole spectrum of human experience” (p. 307). This claim to being exhaustive has been confirmed by multiple valida- tion studies of the ICF Core Sets (Cieza & Stucki, 2008). These studies have demonstrated that the Core Sets cover the problems treated by occupational therapists, physiologists, and psychologists (Cieza & Stucki, 2008).

Section 2.6 Contemporary Issues in the Implementation of the ICF Model

Assessment (12 weeks post-trauma) Evaluation (16 weeks post-trauma)

ICF qualifier* Goal

relation

Goal

value*

Goal

achieve-

ment

problems

0 1 2 3 4

barrier

0 1 2 3 4

facilitator

positive neutral negative positive neutral negative

influence influence

4+ 3+ 2+ 1+

barrier

0 1 2 3 4

facilitator barrier

0 1 2 3 44+ 3+ 2+ 1+

ICF qualifier*

problems

0 1 2 3 4

Global goal: Complete independence

Service-program-goal: Independence in ADLs

Cycle goal 1: d4 Independence in mobility

Cycle goal 2: d5 Independence in self-care

Cycle goal 3: d9201 Sport

ICF categories - Intervention targets

not evaluated yet

b28013

b415

b420

b7101

b735

b755

b7603

b7800

s810

d410

d4153

d4200

d465

b4751

d510

d520

d5300

d5301

d540

d9201

e1101

e1151

e1201

e155

e5700

e5750

Pain in the back

Blood vessel functions - at risk

Blood pressure functions

Mobility of several joints

Muscle tone functions

Involuntary movement reaction functions

Supportive functions of the arms

Sensation of muscle stiffness (M. ischioculare)

Structure of areas of skin - at risk

Changing basic body positions

Maintaining a sitting position

Transferring oneself while sitting

Moving around using equipment

Driving a car

Washing oneself

Caring for body parts

Regulating urination

Regulating defecation

Dressing

Sport

Drugs

Assistive products: Chair cushion

Assistive products: Wheelchair, car

Design and construction of private building

Social security services

General social support/service

Knowledge

Acceptance of disease

1.2

SP.G

–

Figure 2.3: ICF evaluation display illustrating change in rehabilitation patient’s functioning status

The ICF evaluation table displays changes in the patient’s 12-week assessment and 16-week evaluation. This information helps identify the effects of selected treatment methods.

Section 2.6 Contemporary Issues in the Implementation of the ICF Model

While the breadth of the ICF classification has undergone extensive empirical study, the depth and precision of individual categories has not seen the same level of research. Also, in some empirical studies in this area, individual clinical conditions have been linked to different cat- egories in the classification system (Cieza & Stucki, 2008). To serve as an objective basis for clinical and policy decision-making, the classifications should be mutually exclusive (e.g., the same criteria should not be able to label more than one condition, or vice versa). Clearly, this problem with the so-called content validity of the model will have to be addressed in the future.

Measuring Subjective Experience: Lost in Translation? There are challenges with the ICF model in that it simultaneously strives for an objective con- cept of well-being (a health state in which an individual has no condition or disability that would hinder the development of one’s full potential individually or as part of a community) while also incorporating the subjective experiences of the individual (e.g., by acknowledging QOL considerations). According to Cieza and Stucki (2008), this challenge might be resolved by defining QOL as “an individual’s perceptions of the domains of objective well-being” (p. 311), that is, a subjective perception of an underlying, objective reality. The individual’s perception about their QOL due to the condition is assessed as part of the ICF questionnaire, but the perception can change from day to day. Because our health care industry is frag- mented, patients are often treated not as a whole but as only a part of a whole. For example, one doctor treats heart disease. Another doctor treats arthritis. Yet another doctor treats dia- betes. The doctors may or may not share their patient health records with the other doctors, depending on whether the electronic health records (EHR) are accessible by the doctors (e.g., another doctor may work in a different health care organization, so they don’t use the same brand of EHR system). The patient may never be asked about their QOL because the doctors must justify payment by using objective findings. Unfortunately, doctors may miss a big piece of the patient’s health care puzzle by overlooking the patient’s subjective beliefs. Cieza and Stucki (2008) concluded the following:

The ICF has also [sic] a potential as a conceptual framework to clarify and organize an interrelated universe of health-related concepts, such as, well- being, health state, health status, Quality of Life and Health-Related Quality of Life [emphasis added]. All of these concepts can be elucidated based on the ICF. The result is a coherent framework of interrelated concepts that contrib- utes to our understanding of human health and well-being. (312)

In addition to translating between the subjective experience of the individual with a disability and the ICF model, the ICF must be useful for the health care provider. With 1,424 categories, the ICF is clearly not practical for the workaday clinician. Consequently, a 12-page ICF check- list has been developed; it relies on 125 “second-level categories” and usually takes one hour to complete (Stucki, Kostanjsek, Ustün & Cieza, 2008, p. 318). The ICF Core Sets are also a more practical tool. The development of the Core Sets has been an iterative process, involv- ing collecting empirical data from various regions of the world, reviewing clinical literature, and using qualitative study techniques such as focus groups and patient interviews (Stucki et al. 2008). And the final content of these Core Sets has been established at multiple consensus conferences—meetings of experts in the field to discuss standards and practices.

Section 2.7 Considerations for Health Care Practitioners

Even though some researchers believe that the ICF can replace the subjectivity of individ- ual patient experience with standardized categories, others question whether this can—or should—be achieved. Writing about the treatment of cancer patients, Bornbaum, Doyle, Skarakis-Doyle, and Theurer (2013) contended that acknowledging subjective patient expe- riences is integral to patient care. Consequently, these researchers see a conflict between the move toward standardization (embodied by the ICF) and the uncertainties inherent in can- cer treatment. They claimed that optimal patient-centered care “extends beyond the scope of body functions, structures, activities, and participation” (Bornbaum et al., 2013, p. 81); instead, personal factors such as an individual’s experiences, coping style, attitudes, knowl- edge, values, and preferences should be considered.

In particular, because cancer can be incurable and may require prolonged management, QOL considerations become paramount in assessing what constitutes optimal treatment. On this subject, Bornbaum et al. showed the starkest contrast with the ICF. They noted that the WHO (the entity that developed the ICF) defined QOL in subjective terms:

an individual’s perception of their position in life, in the context of their cul- ture and values system where they live, and in relation to their goals, expecta- tions, standards, and concerns. It is a broad ranging concept, incorporating in a complex way a person’s physical health, psychological state, level of inde- pendence, social relationships, personal beliefs, and relationship to salient features of the environment. (Bornbaum et al., 2013, p. 82)

Although they acknowledged that ICF categories based on functioning can be used to oper- ationalize QOL, they stated that this is not viable because the ICF categories are objective, whereas QOL is inherently subjective. They observed that “two individuals with the same health condition may experience similar situations very differently due to the meaning that they place on certain activities and/or levels of participation” (Bornbaum et al., 2013, p. 82).

2.7 Considerations for Health Care Practitioners For a health care administrator, it is useful to think about disability models (e.g., ICF or CHART) through two lenses: the subjectivity/objectivity continuum and the micro/meso/ macro perspectives of Bronfenbrenner (see “Bronfenbrenner’s Ecological Model of Human Development” in section 1.6 of Chapter 1). Let’s consider the micro-level perspective of an individual with a disability. According to the biomedical model, this disability is understood in the purely objective terms of an individual’s abnormal pathology. In contrast to this “objec- tive” view, the social and biopsychosocial models emphasize acknowledging the patient’s subjective perception of illness.

For a health care professional, the relevant issue would be to acknowledge both the objective and the subjective components of the patient’s disability. The question then becomes what form this acknowledgement should take. The clinical physician has a duty to listen to the patient’s experience to gather information when making a diagnosis as well as when recom- mending rehabilitation methods. The health care administrator, whose work focuses more on the documentation aspect of the industry, might make sure that both the objective and subjec- tive (patient-centered) categories are checked on the ICF Assessment Sheet.

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When a person with a disability is viewed with a meso perspective (e.g., work or school), additional evaluation criteria come into play. The health care administrator must deal with the legal accommodations required for an individual who is disabled, according to, for exam- ple, the ADA. These are objective criteria, because laws have formally spelled out the rules. Therefore, in structuring rehabilitation efforts to reintegrate the disabled individual back into society, two sets of objective criteria (ICF framework and legal requirements) must be used in addition to a patient’s subjective psychology.

Finally, when considering the macro-level factors that inform disability policy and research, objective criteria become paramount. The ICF was meant to achieve three broad policy objec- tives: (a) to improve health policies, (b) to achieve better health for the population, and (c) to ensure that health systems are cost-effective and fair (WHO, 2002, p. 5). To determine whether all three objectives have been met, policy makers and researchers need to collect statistical data about the number of individuals with disabilities, the cost of various interven- tions, and other information. This requires them to strip away the subjective features of the particular individual with a disability and consider, for instance, how many individuals fall into predetermined disability categories.

Given the comprehensiveness of the ICF classification system, strong evidence shows that these policy objectives might be achievable. However, although the ICF has become the refer- ence standard, many other surveys have been developed that use different means to measure participation (a key ICF construct). Ongoing research is still required to establish uniformity among these diverse survey instruments.

Ultimately, subjective and objective assessment criteria are both legitimate when dealing with a disabled individual. The issue is how best to mediate these two concerns, which depends not only on whether the focus is treatment or research but also on whether disability is being examined from the micro, meso, or macro perspective.

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Chapter Summary In the past several decades, two major changes have occurred regarding illness and disabil- ity—one epidemiological, the other conceptual. In epidemiology, the 20th century witnessed an epidemiological transition from infectious disease to chronic disease as the leading cause of morbidity and mortality. Consequently, disease came to be associated less with a specific event and more with attendant disabilities that require ongoing management.

Disability was first conceived in terms of abnormal biological functioning (the biomedical model). Later, disability was conceived as the inability to adapt to one’s environment (the social model). Finally, disability was conceived as the interaction between biological abnor- mality and attendant difficulties with environmental adaptation (the biopsychosocial model).

The biopsychosocial model has been refined over the decades. Nagi (1965) developed what came to be called the functional disablement model of disability, according to which the individual-environmental relationship is viewed in terms of four interrelated factors:

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Key Terms activities Execution of a task or action (ICF definition).

acute condition A departure from health with relatively rapid onset and a definite disease trajectory (either recovery or death).

Americans with Disabilities Act (ADA) A 1990 law designed to ensure that those with disabilities are not discriminated against in employment or in the use of public facilities.

chronic condition A departure from health, usually with a long onset, potentially multi- ple causal factors, and protracted treatment.

congenital A term used to define a disorder or abnormality existing at or dating from birth.

consensus conferences Meetings of experts in a field to discuss and agree on standards and practices.

pathology, impairment, functional limitation, and disability. Starting at the most basic, bio- logical level of individual pathology, Nagi envisioned a hierarchical relationship among these factors, with disability as the final result.

In 1997, the IOM produced an updated model of disability. Drawing on Nagi’s basic frame- work, the IOM emphasized the potentially beneficial role of the environment in the interac- tion. The environment was not just a risk factor to biologically impaired individuals; rather, it could function as an enabler. This model emphasized a more sociological understanding of disability.

In the 1970s, the field of epidemiology began studying the economic burden of disease and the cost of medical interventions on the population. During that decade, the QALY method of determining the cost of outcomes, regardless of whether the patient received a treatment or not, was created. Later, in the 1990s, the WHO and Harvard developed the DALY system. These methods are similar in that they compare the cost of intervention versus the cost of no intervention on society.

In the 21st century, the WHO has made a major effort toward standardizing the classifica- tion of disability. In 2001, the WHO developed the ICF, which was endorsed by all 191 mem- ber states. Continuing the trend of viewing disability as an ongoing process, the ICF focused on the general issues of health and health-related states. The ICF emphasized a health– disability continuum, rather than viewing the two as static categories. Also, the ICF combined both biological (disease, bodily function) and contextual (environmental, behavioral) fac- tors into its model as it defined each category more precisely to increase uniformity. Ideally, the ICF’s uniformity provides a baseline for each stage of the rehabilitation cycle for an indi- vidual with disability: assessment, assignment, intervention, and evaluation. However, much remains to be done to make it a universally applicable standard.

In the late 1980s, the standardized questionnaire CHART was developed to determine the level of disability that occurs after a person is diagnosed with a spinal cord injury. It is now used for other chronic conditions, such as traumatic brain injury and multiple sclerosis. The questionnaire is administered multiple times over a period of years, including soon after the incident causing disability. The responses are a method of documenting improvements with adaptation or declining health with increasing disability.

Summary and Resources

Craig Handicap Assessment and Reporting Technique (CHART) A widely used survey that assesses how well an individual with a disability can engage in various behaviors. It was designed to measure to what degree impairments and disabilities result in handi- caps in the period after rehabilitation.

disability According to the ADA, a physi- cal or mental impairment that substantially limits one or more major life activities for an individual.

disability-adjusted life-years (DALYs) A measurement of QOL for an individual who has to live with a chronic condition or dis- ability. It measures health loss by viewing the number of years lived with a condition as a percentage of the total elapsed time. Although measuring the same concept, it represents the opposite of QALY.

disease A deviation from normal biological functioning in a living organism.

enabling factor A characteristic in a dis- abled person’s environment that aids in the performance of life activities.

enabling-disabling process An update of the definition of disability that further accentu- ates the role of the environment; this updated definition was devised in 1997 by the IOM.

epidemiological transition The shift away from infectious and toward chronic disease as the leading cause of morbidity and mor- tality in Western society.

epidemiology The study of the causes of disease as well as of groups of people who are diagnosed with different types of diseases. These studies often provide the statistics and incidence rates.

functional disablement model of dis- ability A system in which the individual’s relationship to the environment is viewed in terms of four interrelated factors: pathol- ogy, impairment, functional limitation, and disability.

functional limitation Inability to perform a standard task of daily living because of impairment.

handicap The inability of an individual to fully participate in society because of a dis- ability. This term has been largely replaced by disability in many texts.

ICF Core Sets Lists derived from ICF cat- egories and tailored to specific diseases or health care contexts. They can be used in clinical studies or health statistics and to guide multidisciplinary assessments.

impairment Altered physiological or psychological state caused by disease or disability.

independent risk factors A characteris- tic, experience, or event that increases the probability that an individual will contract a particular disease. Independent risk factors are uncorrelated, or unrelated, to each other; however, each is, individually, a risk factor for a disease.

Institute of Medicine (IOM) Established in 1970 as the health arm of the National Academy of Sciences, this nonprofit, nongov- ernmental organization conducts evidence- based studies to improve the nation’s health so that leaders in government and the pri- vate sector can make informed decisions.

International Classification of Function- ing, Disability and Health (ICF) A stan- dard framework for assessing health and health-related states to guide treatment and policy relating to disability. Developed by the WHO in 2001.

iterative process A procedure that, through repetition and refinement of a series of operations (e.g., a computer program), yields results that approach a desired goal.

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mechanical philosophy A 17th-century view of the universe and the human body that sees both in purely mechanistic terms; from this perspective, the human body is a machine governed by fixed laws.

participation Involvement in life situations (ICF definition).

pathology Abnormality in the human body at the cellular level, indicating the presence of disease.

patient-centered care An approach to medi- cal treatment prominent among health advo- cates, in which incorporating the views of the patient is a central part of planning therapy.

patient-centered interviewing A style of communication in which the health care provider questions the patient to elicit dis- tinctive, patient-specific information so that treatment can be tailored to that individual’s unique circumstances.

population-based studies/population surveys A style of research that involves giving standardized questionnaires to large groups of individuals who share similar characteristics. The goal is to elicit informa- tion about the population to inform both clinical decision-making and health policy formulation.

quality-adjusted life-years (QALYs) A measurement of QOL for an individual who has a chronic condition or disability. It mea- sures health gain by viewing the number of years lived with a condition as a percentage of the total elapsed time. Although mea- suring the same concept, it represents the opposite of DALY.

quality of life (QOL) Assessment by an individual of his or her satisfaction with life, as currently experienced. QOL is based on the interaction of physical well-being, psychological state, and relationship to environment.

quantifiable The ability to express an out- come in numerical terms.

rehabilitation (rehab) cycle Stages of rehabilitation management: assessment, assignment, intervention, and evaluation. Can be integrated with the ICF Core Sets.

reliability In a test, survey, or scientific study, the consistency of measurement; the extent to which a measured variable is free from random errors.

social group Two or more individuals who interact with one another and share at least one common characteristic.

social model Perspective of disability and disease that acknowledges the duty of soci- ety to eliminate barriers so that all individu- als can function in their chosen activities.

teratogens Environmental agents that can produce birth defects. Include bacteria, viruses, drugs, chemicals, and radiation.

transitional factors In the IOM’s model of disability, the generic term for a risk factor or an enabling factor that allows an indi- vidual to move from disability to health (or vice versa).

validity The accuracy of measurements; the extent to which measurements are free from systematic error.

well-being A health state in which an individual has no condition or disability that would hinder the development of one’s full potential individually or as part of a community.

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Critical-Thinking and Discussion Questions

1. What administrative problems might be encountered when some members of a patient’s health care team look at disability through the lens of the biomedical model, whereas others look at it through the lens of the social model? Could the vari- ous definitions discussed in this chapter offer a way to bridge the gap between these perspectives?

2. Given that one of the goals of patient-centered care is to take the patient’s wishes seriously, how should health care providers deal with situations in which the patient’s wishes and the evidence-based recommendations conflict?

3. Compare and contrast the views of disability as developed by Nagi, the IOM, and the WHO for its ICF model. Do you think some of these might be more useful in a clinical setting, whereas others might be more useful in a policy-making setting?

4. CHART was developed specifically for spinal cord and traumatic brain injury patients—disabilities directly caused by physical trauma. Do you think this survey would be as effective for assessing disabilities that are less concretely defined or are psychological in nature—for example, clinical depression? Give reasons for your answer.

5. The increasing focus on the biopsychosocial model (at the clinical level) and the movement toward evidence-based medicine (at the policy level) pull in contradic- tory directions: The biopsychosocial model emphasizes the subjective experience of the patient, whereas evidence-based medicine emphasizes objectivity and standard- ized rules. When deciding what to do for a particular patient, which one of these approaches do you think should have priority? Or, do you believe there are ways to reconcile the apparent conflict?