The Illness Experience
Pamala D. Larsen
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obligated, at least for a spell, to identify ourselves as citizens of that other place.
INTRODUCTION
Commonly, healthcare providers are educated in the medical model and understand its applicability and use in practice. Clients enter a healthcare system with symptoms, which are then diagnosed based on pathological findings, and as such are treated and/or cured with medical treatment. For acute disease, this is the pattern. One isn’t concerned about the client’s illness behavior associated with appendicitis, tonsillitis, or a fractured leg. An individual may be concerned that the tonsillitis will return, the fractured leg may not heal normally, or there may be an adverse event associated with the appendectomy, but by and large, these concerns pass quickly because of the acuteness of the event. The United States’ acute care-focused healthcare system acts upon the pathology that is present, with the goal that an individual will fully recover from the condition and return to prior behaviors and roles.
What happens however, when the recovery is incomplete or the illness continues or becomes chronic in nature? The individual and family have to modify or adapt previous behavior and roles to accommodate the chronicity of the condition. Societal expectations, their own expectations, and their health status all influence illness behavior. This chapter provides an overview of the illness experience and corresponding behavior demonstrated by those with chronic illness— it presents a sociological view of illness rather than a medical view of illness. It is not meant to be a comprehensive review of the entire body of knowledge, which is vast.
Historical Perspectives
Chronic disease involves not only the physical body, but it also affects one’s relationships, selfimage, and behavior. The social aspects of disease may be related to the pathophysiologic changes that are occurring, but may be independent of them as well. The very act of diagnosing a condition as an illness has consequences far beyond the pathology involved (Conrad, 2005). Freidson (1970) discussed this more than 40 years ago in his writings about the meaning that is ascribed to a diagnosis by an individual
and family (p. 223). It is not merely pathology or a diagnosis anymore, and the individual and family develop their own meanings and perceptions of the condition, and ultimately their own, unique illness behaviors. The earliest concept of illness behavior was described in a 1929 essay by Henry Sigerist. His essay described the “special position of the sick” (as cited in Young, 2004). Talcott Parsons developed this concept further and described the “sick role” in his 1951 work, The Social System. A brief examination of the sick role provides context to the illness experience, perceptions, and behavior.
and family (p. 223). It is not merely pathology or a diagnosis anymore, and the individual and family develop their own meanings and perceptions of the condition, and ultimately their own, unique illness behaviors. The earliest concept of illness behavior was described in a 1929 essay by Henry Sigerist. His essay described the “special position of the sick” (as cited in Young, 2004). Talcott Parsons developed this concept further and described the “sick role” in his 1951 work, The Social System. A brief examination of the sick role provides context to the illness experience, perceptions, and behavior.
Sick Role
Talcott Parsons, a proponent of structural— functionalist principles, viewed health as a functional prerequisite of society. From Parsons’s point of view, sickness was dysfunctional and was a form of social deviance (Williams, 2005). From this functionalist viewpoint, social systems are linked to systems of personality and culture to form a basis for social order (Cockerham, 2001, p. 160). Parsons viewed sickness as a response to social pressure that permitted the avoidance of social responsibilities. Anyone could take on the role he identified, as the role was achieved through failure to keep well.
The four major components of the sick role include:
The person is exempt from normal social roles.
The person is not responsible for his/her condition.
The person has the obligation to want to become well.
The person has the obligation to seek and cooperate with technically competent help. (Williams, 2005, p. 124)
Although the sick role may have been accepted when developed by Parsons in the 1950s, it is no longer considered relevant today. American culture for the most part has embraced a role of self-care and self-management of disease and participation with care providers to obtain optimal health. Parsons’s sick role was based on assumptions about the nature of society and the nature of illness during a previous period of time (Weitz, 2007).
Using Parsons’s work as a basis, Mechanic (1962) proposed the concept of illness behavior as symptoms being perceived, evaluated, and acted (or not acted) upon differently by different persons (p. 189). He believed it was essential to understand the influence of norms, values, fears, and expected rewards and punishments on how an individual with illness acts. Mechanic (1995) defines illness behavior as the “varying ways individuals respond to bodily indications, how they monitor internal states, define and interpret symptoms, make attributions, take remedial actions and utilize various sources of formal and informal care” (p. 1208).
Around the time of Mechanic’s earlier work, Kasl and Cobb (1966) identified three types of health-related behavior:
Health behavior is any activity undertaken by a person believing himself to be healthy, for the purpose of preventing disease or detecting it in an asymptomatic stage.
Illness behavior is any activity, undertaken by a person who feels ill, to define the state of his health and to discover a suitable remedy.
Sick-role behavior is the activity undertaken, for the purpose of getting well, by those who consider themselves ill.
McHugh and Vallis (1986) suggest that perhaps instead of categorizing behavior as healthrelated, illness-related, or sick-role-related that it makes more sense to look at illness behavior on a continuum. By doing this, the term illness behavior can be broadly defined, and this characterization is more helpful, because the distinction between health and illness behaviors is arbitrary at times (p. 8).
A more current definition of illness behavior suggests that illness behavior “includes all of the individual’s life which stems from the experience of illness, including changes in functioning and activity, and uptake of health services and other welfare benefits” (Wainwright, 2008, p. 76). Simply put, when an individual defines him/herself as ill, different behaviors may be displayed. A behavior could be as simple as seeking medical treatment or as complex as the individual’s emotional response to the diagnosis. As more acute conditions become chronic in nature, there is more interest in how individuals behave in these circumstances. Individuals with chronic illness are living longer and are creating new norms of illness behavior.
Illness Perceptions
According to Rudell, Bhui, and Priebe (2009), two theories have dominated illness perception research: 1) the explanatory model (EM) from Kleinmann (1985); and 2) illness representations (IR) as a part of the self-regulatory theory (Leventhal, Leventhal, & Cameron, 2001). Explanatory models are associated with mental illness as Kleinmann is a cross-cultural psychiatrist and anthropologist. Leventhal and colleagues, on the other hand, based their research on psychological theory. They argue that there is both a cognitive and an emotional representation of illness (Rudell et al., 2009). Although both models hold credence for individuals and families with chronic illness, this text uses the work of Leventhal and colleagues as a basis for the discussion of illness perceptions and behaviors.
Prior to focusing on behaviors, a discussion of illness perceptions is needed, as they are the basis for the behaviors exhibited by individuals and families. The literature uses two terms, illness representations and illness perceptions. Both refer to how the client (and family) view the illness. Illness representations belong to clients and are interpreted by clients and may not conform to scientific beliefs (as cited in Lee, Chaboyer, & Wallis, 2010; Diefenbach, Leventhal, Leventhal, & Patrick-Miller, 1996). In a majority of studies, illness representations are measured by the Illness Perception Questionnaire, the Illness Perception Questionnaire-Revised, or the Briet Illness Perception Questionnaire. Each of these questionnaires assesses the cognitive and emotional responses to illness (www.uib.no.ipq). For purposes of this chapter, the words will be used interchangeably, although medical sociologists might question that decision.
Why are illness perceptions of interest to healthcare providers? The primary reason is that these perceptions directly influence the emotional response that clients and families have to the illness (Petrie & Weinman, 2006). How one behaves due to the illness, implements coping strategies, and generally responds to the illness is based on one’s perceptions. Clients and their families do not simply develop their own illness beliefs and perceptions within a vacuum, but they are molded by their everyday social interactions (Marks et al., 2005), their past experiences, and their culture.
Clients and families build mental models to make sense of an event (Petrie & Weinman, 2006). Thus, when a client and family face a
health threat, a model of that event is developed. The idea behind a model is that clients can then visualize the threat and become active problem solvers. Within those models are their perceptions of the diagnosis, the illness experience, the treatment, and the consequences, which in turn, forecast how they will behave and/or respond to the crisis. Often these models may not make sense to an outsider, and often they may be built on faulty information. The model is dynamic, changing as new data from healthcare providers, their own experiences, and other sources are presented to the client and family and become incorporated into the model.
health threat, a model of that event is developed. The idea behind a model is that clients can then visualize the threat and become active problem solvers. Within those models are their perceptions of the diagnosis, the illness experience, the treatment, and the consequences, which in turn, forecast how they will behave and/or respond to the crisis. Often these models may not make sense to an outsider, and often they may be built on faulty information. The model is dynamic, changing as new data from healthcare providers, their own experiences, and other sources are presented to the client and family and become incorporated into the model.
Leventhal and colleagues (2001) identified five dimensions that represent a client’s view of their illness: 1) identity of the illness— connecting the symptoms with the illness and having an understanding of the illness; 2) timeline— duration and progression of the illness; 3) causes—perceived reason for the illness; 4) consequences— what will be the physical, psychosocial, and economic impact of the illness; and lastly 5) controllability —can this disease be controlled or cured? After identification of these dimensions, Leventhal and colleagues. believe that coping and appraisal follow.
However, is it that simple? Leventhal and colleagues’ explanation leads one to believe that everything fits into a neat little box and there is a natural, linear progression from identity to control/curability. Imagine that a chronic illness has either entered your life or affected someone in your family. You may have had some sort of identity of it prior to diagnosis, but now that the condition is “yours,” that perception changes. Plus, you have the Internet to provide you with more information than you can absorb. You begin with the idea that this condition is controllable, and perhaps curable, but you find a plethora of websites and data that tell you otherwise. Thus, your beliefs and perceptions of the situation can be changed overnight, and in turn, your attitudes and behaviors do so as well.
Clients and families with chronic illness need to make sense of their illness. They construct models of the illness in an attempt to be logical and inject sense into their lives. Often the diagnosis of a chronic condition doesn’t make sense to clients. The model is created to make the situation rational to the individual and family. The model is dynamic and fluid throughout the illness or threat; it’s what clients and families with chronic illness “hang their hat on”—it helps them cope.
The literature about the effects of illness perceptions and beliefs on behavior and treatment is vast. What follows are some representative research studies that demonstrate current and continuing work in this area. Although there is work with clients who have a number of different chronic illnesses or injuries such as spinal cord injury (deRoon-Cassini, de St. Aubin, Valvano, Hastings, & Horn, 2009), the majority of studies have focused on heart disease.
Heart Disease
Several studies have explored the relationships among quality of life, adherence to and choice of treatment, and illness beliefs/perceptions. Juergens, Seekatz, Moosdorf, Petrie, and Rief (2010) studied 56 patients undergoing coronary artery bypass grafting (CABG). Participants were assessed using the Illness Perception Questionnaire-Revised (IPQ-R) prior to and 3 months post-surgery. The researchers concluded that patients’ beliefs before surgery strongly influenced their recovery from surgery. They added that perhaps patients could benefit from some pre-surgery cognitive interventions to change maladaptive beliefs (p. 553). Similarly, Alsen, Brink, Persson, Brandstrom, and Karlson (2010) found that patients’ illness perceptions
influenced health outcomes after myocardial infarction. Broadbent, Ellis, Thomas, Gamble, and Petrie (2009) indicate that a brief in-hospital illness perception intervention changed perceptions and improved rates of return to work in patients with myocardial infarction.
influenced health outcomes after myocardial infarction. Broadbent, Ellis, Thomas, Gamble, and Petrie (2009) indicate that a brief in-hospital illness perception intervention changed perceptions and improved rates of return to work in patients with myocardial infarction.
In a sample of clients with atrial fibrillation, patients’ perceptions about their symptoms and medication at diagnosis affected their healthrelated quality of life (Lane, Langman, Lip, & Nouwen, 2009). Negative illness beliefs were significantly predictive of higher levels of depressive symptomology at 3 and 9 months in clients with coronary artery disease (Stafford, Berk, & Jackson, 2009). Illness beliefs were also significantly associated with depressive symptomology and health-related quality of life in clients with coronary artery disease. In a study examining adherence to secondary prevention regimens, illness beliefs contributed to adherence to those behaviors (Stafford, Jackson, & Berk, 2008).
Two representative studies in hypertension have included the relationships between treatment and illness perceptions. Chen, Tsai, and Chou (2010) tested a hypothetical model of illness perception and adherence to prescribed medications. Using a sample of 355 hypertensive patients, findings suggested that adherence could be enhanced by improving the patient’s perception of controllability. Other researchers have argued that illness perceptions/beliefs about hypertension have played a role in the choice of medication for treatment of hypertension (Figueiras et al., 2010).
Work Participation
Hoving, van der Meer, Volkova, and Frings-Dresen (2010) completed a systematic review of illness perceptions and participating in work (however, only three studies met the authors’ criteria for review). They found that nonworking clients perceived more serious consequences, expected their illness to last a long period of time, and reported more symptoms and emotional responses. The working clients had a strong belief in the controllability of their condition and a better understanding of the disease (its identity).
Influences on Illness Behavior
Illness behavior is shaped by sociocultural and social-psychological factors (Mechanic, 1986). What follows in this section are examples of these factors.
Culture of Poverty
The culture of poverty (see Chapter 13) influences the development of social and psychological traits among those experiencing it. These traits include dependence, fatalism, inability to delay gratification, and a lower value placed on health (Cockerham, 2001, p. 123). The poor, who have to work to survive, often deny sickness unless it brings functional incapacity (Helman, 2007). Different cultures may define and interpret health and illness in a variety of ways (see Chapter 13). Individuals with chronic illness in the culture of poverty will have different looking illness perceptions and behaviors depending on their unique ethnic origins.
Demographic Status
Marital status may influence illness behavior as well. In general, married individuals require fewer services because they are healthier, but utilize other services because they are more attuned to preventive care (Thomas, 2003). Searle, Norman, Thompson, and Vedhara (2007) examined the influence of the illness perceptions of clients’ significant others and their impact on client outcomes and illness perceptions. Differences in illness representations of
significant others and clients have been shown to influence psychological adaptation in chronic fatigue syndrome and Addison’s disease (cited in Searle et al., 2007). Searle and colleagues sought to understand illness representations in clients with type II diabetes and their partners. However, in this study, almost without exception, there was agreement between the illness representations of patients and their partners. Another aim of the study was to determine the influence of the partner or significant other on the clients’ illness representation. There was some evidence to suggest that partners’ representations partially mediated clients’ representations on exercise and dietary behaviors (Searle et al., 2007).
significant others and clients have been shown to influence psychological adaptation in chronic fatigue syndrome and Addison’s disease (cited in Searle et al., 2007). Searle and colleagues sought to understand illness representations in clients with type II diabetes and their partners. However, in this study, almost without exception, there was agreement between the illness representations of patients and their partners. Another aim of the study was to determine the influence of the partner or significant other on the clients’ illness representation. There was some evidence to suggest that partners’ representations partially mediated clients’ representations on exercise and dietary behaviors (Searle et al., 2007).
Gender may influence illness behavior and “help-seeking” behavior in chronic conditions. Sociologic analysis has suggested that women are more likely than men to seek medical help for nonfatal and chronic illness (Bury, 2005). Morbidity rates demonstrate that women are more likely to be sick than men and thus seek more professional medical help (Bury, 2005, p. 55). Lorber (2000) states that women are not more fragile than men, but are just more self-protective of their health status.
Increasing age often brings chronic conditions and disability. However, older individuals in poor health (as measured by medicine’s standard measures) often do not see themselves in this way. What may influence older adults’ perceptions of their illness and subsequent behavior may not even be considered by healthcare professionals as “relevant.” Kelley-Moore, Schumacher, Kahana, and Kahana (2006) identified that cessation of driving and receiving home health care influenced older adults’ illness perceptions, causing them to self-identify as disabled.
Past Experience
One’s education and learning, socialization, and past experience, as defined by one’s social and cultural background, mediate illness behavior. Past experiences of observing one’s parents being stoic, going to work when they were ill, avoiding medical help, all influence their children’s future responses. If children see that “hard work” and not giving in to illness pays off with rewards, they will assimilate those experiences and mirror them in their own lives. Elfant, Gall, and Perlmuter (1999) evaluated the effects of avoidant illness behavior of parents on their adult children’s adjustment to arthritis. Even after several decades, children’s early observations of their parents’ illness behaviors appear to affect their own adjustment to arthritis. Those clients whose parents avoided work and other activities when ill with a minor condition reported greater severity of arthritis and its limitations, depression, and helplessness when compared to clients whose parents did not respond to minor illness with avoidance (Elfant et al., 1999, p. 415).
What if parents and adolescents have differing views on illness perceptions? The illness perceptions of 30 adolescents and their parents were compared to see the effects on the adolescents’ outcomes (Salewski, 2003). Parents’ illness representations had little impact on their children’s outcomes. In families with high similarity between the parents’ perceptions and the adolescents’ perceptions, the adolescents reported more well-being (Salewski, 2003, p. 587).
In another vein, how parents respond to their children’s health complaints may later influence how the children, as adults, cope with illness. Whitehead and colleagues (1994) studied the influence of childhood social learning on the adult illness behavior of 383 women aged 20
to 40 years of age. Illness behavior was measured by frequency of symptoms, disability days, and physician visits for menstrual, bowel, and upper respiratory symptoms. Findings included that childhood reinforcement of menstrual illness behavior significantly predicted adult menstrual symptoms and disability days, and childhood reinforcement of cold illness behavior predicted adult cold symptoms and disability days. The study’s data supported the hypothesis that specific patterns of illness behavior are learned during childhood through parental reinforcement and modeling, and that these behaviors continued into adulthood (Whitehead et al., 1994, p. 549).
to 40 years of age. Illness behavior was measured by frequency of symptoms, disability days, and physician visits for menstrual, bowel, and upper respiratory symptoms. Findings included that childhood reinforcement of menstrual illness behavior significantly predicted adult menstrual symptoms and disability days, and childhood reinforcement of cold illness behavior predicted adult cold symptoms and disability days. The study’s data supported the hypothesis that specific patterns of illness behavior are learned during childhood through parental reinforcement and modeling, and that these behaviors continued into adulthood (Whitehead et al., 1994, p. 549).
In a small study examining illness perceptions in clients with critical illness in a medical intensive care unit, as well as their surrogates, it was hypothesized that perceptions would vary by demographic, personal, and clinical measures (Ford, Zapka, Gebregziabher, Yang, & Sterba, 2010). Although client/surrogate factors, including race, faith, and pre-critical illness quality of life were significant, clinical measures were not. Researchers concluded that clinicians should recognize the variability in illness perceptions and the possible implications this might have for patient/surrogate and healthcare provider communication.
One cannot minimize the impact of the past experiences of the individual and family on how they deal with their own chronic illnesses, their children’s, parents’, and/or siblings’. Each of those experiences affects how the individual and family perceive their current health challenge. These experiences could be positive as well as negative. A negative healthcare experience with a relatively minor injury/illness could have a stronger influence than that of a positive experience with serious illness. As healthcare providers, do not underestimate the client’s and family’s perception of their illness and its effect on outcomes.
IMPACT AND ISSUES RELATED TO ILLNESS BEHAVIOR
As illness behavior is described, it is important to reiterate the difference between the terms disease and illness. Disease is the pathophysiology— the change in body structure or function that can be quantified, measured, and defined. Disease is the objective “measurement” of symptoms. As Wainwright (2008) states,
disease within the medical model is materialist and assumes that the mechanisms of the body can be revealed and understood in the same way that the working of the solar system can be understood through gazing at the night sky. (p. 77)
Illness is what the client and family experience. It is what is experienced and “lived” by the client and family, and includes the “meaning” the client gives to that experience (Helman, 2007). Both the meaning given to the symptoms and the client’s response, or behavior, are influenced by the client’s background and personality as well as the cultural, social, and economic contexts in which the symptoms appear (p. 126).
The Illness Experience and Subsequent Behavior
The diagnosis of a chronic disease and subsequent management of that disease bring unique experiences and meanings of that process to the client and family. The biomedical world
disregards illness and its meaning and focuses instead on disease. Disease can be quantified and measured, and it can be considered a “blackand-white” concept. Disease fits into the medical model’s framework.
disregards illness and its meaning and focuses instead on disease. Disease can be quantified and measured, and it can be considered a “blackand-white” concept. Disease fits into the medical model’s framework.
Illness, and the unique meaning that each of us attaches to it, does not fit into a neat little box; it is not black and white, but consists of many shades of gray and thus defies measurement and categorization. Illness is a subjective label that reflects both personal and social ideas about what is normal as much as the pathology behind it (Weitz, 1991). Kleinmann (1985) expressed concern that researchers have “reduced sickness to something divorced from meaning in order to avoid the hard and still unanswered technical questions concerning how to actually go about measuring meaning and objectivizing and quantifying its effect on health status and illness behavior” (Kleinmann, 1985, p. 149). While realizing the importance of this scientific work, Kleinmann (1985) sees it as “detrimental to the understanding of illness as human experience, because they redefine the problem to subtract that which is mostly innately human, beliefs, feelings” (p. 149).
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