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Physical symptoms often are ambiguous and open for subjective interpretation. Even though people certainly have some awareness of their internal states, that awareness and the accuracy of interpreting internal sensations may be fairly limited (Pennebaker 1982). Many authors state that people are poor at tracking physiological processes. Nevertheless, they hold the belief that they are able to do so. In general, individuals are motivated to maintain an understanding of their bodily condition. Both vague internal states and information about possible diseases lead to interpretive activities. Understanding the processes that guide symptom identiﬁcation and interpretation at the initial stage of the occurrence and also during the course of disease has been found to be critical for understanding how people act upon symptoms and disease.
Traditionally, mainly ﬁelds such as psychophysiology and the medical sciences dealt with questions related to symptom awareness and interpretation. Pennebaker (1982), in his groundbreaking book, brought the information processing perspective to the area. This approach has proven useful in understanding phenomena of symptom awareness and interpretation. Speciﬁcally, Pennebaker proposed that symptoms or sensations are best understood as representing information about internal states. Taking the information processing perspective, this research paper will emphasize the role of the following aspects: (a) information organization and mental representation of symptoms, (b) knowledge activation and use, and (c) an explanation and attribution of symptoms. Throughout, the behavioral implications of the reviewed research for disease-management, help-seeking behavior, and compliance and adherence to medical regimens will be illustrated taking selected diseases as examples (hypertension and diabetes). Finally, open questions and probable directions of future theory and research will be addressed.
1. Information Organization: The Mental Representation Of Symptoms
Given the quantity of information that is available to individuals at any given time, it is functional for the organism to organize and reduce the incoming data. This is achieved by cognitively (re)structuring, synthesizing, and organizing the incoming information. Cognitive psychology has introduced several theoretical constructs in this context, namely schemata, cognitive sets, prototypes, expectancies, and scripts. Studies on the structure of illness schemata consistently found ﬁve dimensions according to which symptom and illness experiences are organized (Lau and Hartman 1983): illness schemata include information about the identity or label of the disease, its consequences (i.e., the symptoms), its causes, its duration, appropriate treatments, and expectations about its curability. Cognitive structures such as illness schemata or prototypes help to organize information from internal sensations (symptoms) and disease-related information gathered from the external environment.
Certainly, the most relevant model of symptom perception within the tradition of information processing has been proposed by Leventhal et al. (1984). Their approach is rooted in cognitive psychology and builds on the work on cognitive schemata and prototypes. In speciﬁc, Leventhal et al. (1984) propose that individuals tend to construct their own individual representation of symptoms or illness and that this idiosyncratic representation will, in turn, inﬂuence their behavior (e.g., help-seeking, adherence, and compliance). Speciﬁcally, they proposed that illness representations (or schemata) are a function of an individual’s semantic knowledge about symptoms and disease and speciﬁc contextual factors such as the nature of somatic changes and the situations in which these occur. This semantic knowledge accumulates across the life span and is acquired through the media, through personal experience, and from family and friends who have had experience with the disease. People’s common sense models of illness strongly inﬂuence which symptoms a person will search for and will ultimately perceive. Work by Meyer et al. (1985) on hypertension illustrates this point. Hypertensives hold one or a combination of disease models about high blood pressure. As Meyer et al. (1985) demonstrated, some patients hold the belief that hypertension is a disease of the heart, others believe that it is an arterial disorder, and a third group might associate hypertension with emotional upset. Importantly, the kind of belief patients hold aﬀects the way they monitor their body: Symptoms that are consistent with their speciﬁc illness belief are more likely to get noticed. The common sense model of illness approach has also been used successfully to explain such phenomena as placebo eﬀectiveness and mass psychogenic illness (MPI). For example, Pennebaker (1982) stated that placebos are eﬀective because they change the way in which individuals process sensory information. Individuals who are worried about their condition—after taking a (placebo) drug—change their focus from sensations that may signal illness to sensations that signify improved health.
In addition to general concepts of illness, people also hold organized conceptions—termed disease prototypes—for particular diseases (Bishop 1991, Bishop and Converse 1986). For example, a person may have a disease prototype of heart disease. Similar to general illness conceptions, prototypes of speciﬁc diseases help people organize and evaluate information about bodily sensations that might otherwise not be interpretable. Thus, a person who holds the belief that he or she is vulnerable to heart disease is more likely to interpret chest pain in accord to his or her prototype of heart disease than a person who does not hold this belief (Bishop and Converse 1986). This latter person might instead regard the chest pain as signaling a gall bladder problem.
Altogether, organized representations of illness-related knowledge and experiences strongly determine symptom awareness and interpretation, and the expectations individuals generate respecting their consequences and causes. This has important implications for health behavior as the kind of beliefs patients hold about symptoms and disease may lead them to alter or fail to adhere to their treatment regimens (e.g., see Patient Adherence to Health Care Regimens).
2. Knowledge Activation And Use
2.1 The Role Of Knowledge Activation In Symptom Awareness
What directs individuals to become aware of a symptom and how to interpret it? As noted above, individuals use hypotheses and subjective theories (their prototypes) about diseases to interpret initially ambiguous symptoms. Once a plausible hypothesis is identiﬁed, information to verify the hypothesis is sought. This is performed by selectively scanning stored knowledge for matching evidence. Given the rather vague nature of many symptoms, conﬁrming evidence often can easily be found.
The accessibility of knowledge stored in memory has been demonstrated to increase when it has been recently primed. Mechanic (1972), for example, documented a common phenomenon in medical schools, the medical students’ disease. He reported that about 70 percent of ﬁrst-year medical students perceive symptoms of those illnesses studied in their courses. Obviously, studying the symptoms leads students to focus on their own internal states and to compare what they hear with their concrete personal experience at the moment. Vague, ambiguous physical sensations are then interpreted in accordance with the disease that was made salient in their course.
Importantly, Leventhal et al. (1980) showed that this process can work both ways. They proposed the symmetry rule, which holds that individuals will (a) seek symptoms when given a diagnostic label (such as in the medical students disease) and (b) seek a diagnostic label when experiencing symptoms, that is, the perception of a change in internal sensation creates a pressure for ﬁnding a label. Similarly, being provided with a label of a speciﬁc disease generates pressure for a perceptual referent. Schachter and Singer’s (1962) classic study can be regarded as evidence for the symptom-to-label part of the symmetry rule since it shows that people will come up with a speciﬁc interpretation or label for their somatic sensations that can explain their condition (see below, attribution of symptoms). Bishop’s (1991) and Bishop and Converse’s (1986) studies on diﬀerences in symptom perception as a function of diﬀerential beliefs about hypertension mentioned earlier can also be interpreted as reﬂecting the symptom-to-label part of the symmetry rule.
The second part of the symmetry rule (that people will seek symptoms when given a label) is consistent with ﬁndings by Meyer et al. (1985) on hypertension. Hypertension is largely a symptomless disease. However, many patients erroneously believe that they can tell when their blood pressure is high (e.g., they believe their blood pressure to be high when their face gets warm, their heart beat increases, or they are feeling tense) (Baumann and Leventhal 1985). In fact, though, the correlation between beliefs about level of blood pressure and actual blood pressure is low (Meyer et al. 1985). In accord with the label-to-symptom part of the symmetry rule, the authors found that patients in hypertension treatment became more likely to perceive their blood pressure the longer they were in treatment (even though high blood pressure, in fact, is unsymptomatic).
Importantly, illness representations strongly inﬂuence the way patients will act upon (subjectively perceived) symptoms. Taking hypertension as an example, patients have been found to treat their condition based on their belief that they are able to detect when their blood pressure is high and when it is not. When they ‘feel ﬁne,’ they may discontinue taking medication, and when they believe their blood pressure is high they might take it. A similar phenomenon has been documented for the self-management of diabetes. Both hyperglycemia and hypoglycemia produce un- pleasant bodily sensations that can be vividly de- scribed by patients (Hampson 1997). Diabetes patients often fail to self-monitor their blood glucose level and instead, like hypertension patients, rely on what their blood glucose level ‘feels like.’ However, the relation between symptom experience and acute blood glucose levels is also often imprecise, and patients are misled by their illness belief. Hence, diabetes patients need to be advised that their illness management should not rely on subjective perceptions of their blood glucose level. Instead, in deciding when to take measures to increase or decrease their blood glucose level, they should rely exclusively on testing their blood glucose (Hampson 1997, see Diabetes: Psychosocial Aspects).
2.2 The Role Of Knowledge Activation In Symptom Interpretation
What determines which knowledge will be activated and used in order to interpret perceived symptoms? The evaluation of symptoms is very subjective and has been found to be inﬂuenced by the nature of their attributes. Symptom attributes can include such aspects as how salient (noticeable) and how unexpected they are, or which consequences they may have for one’s life. Not all features of a physical sensation receive equal attention. Most likely, symptoms that are visible or cause pain draw most attention. Similarly, symptoms that aﬀect highly valued parts of the body (e.g., the eyes, face, or heart) usually are interpreted as being more serious and as more likely to require attention than symptoms that aﬀect less valued organs. In sum, symptoms that hurt, symptoms that change quickly, and symptoms that are incapacitating are more likely than their opposites to be interpreted as signs of a serious illness and therefore more likely to induce a person to seek medical treatment (Safer et al. 1979).
This selective attention to symptoms can have its costs, however, when symptoms that are not salient but nevertheless serious remain unnoticed. For example, people with heart attacks often wait for several hours until they seek help (Matthews 1982). As a consequence, 70 percent of all deaths due to heart attacks occur in the ﬁrst few hours. Matthews noticed that a person will wait longer before seeking help the less salient the ﬁrst symptoms are, the more depressed and exhausted the person is, and the more eﬀortful the activity is that they are engaged in at the time of symptoms’ onset. The latter eﬀect can also be explained by Pennebaker’s (1982) Competition of Cues Model. In his model, Pennebaker states that external and internal sensory information compete for people’s attention. The likelihood with which internal sensory perceptions are perceived then is a function of the proportion of external to internal information. When people are focused externally, for example, in a highly distracting environment or during a vigorous physical activity, they are slower at noticing symptoms. In contrast, when the external environment lacks stimuli, attention is more likely directed toward the body. This increases the likelihood that cues that suggest illness are noticed (Pennebaker 1982). In one study, for example, Pennebaker demonstrated that people are more likely to cough during boring parts of a movie than during more interesting parts. Apparently people focus their attention more on their internal states when there are few external stimuli, and are therefore more likely to notice itching or tickling in their throats to which they then respond with coughing.
Altogether, the awareness and interpretation of internal sensations is a function of the relation between external and internal stimuli. And it is also a function of the beliefs that individuals hold. The beliefs cause them to selectively attend to speciﬁc internal information or contextual information, i.e., not all knowledge is used in evaluating internal states.
3. Explanation And Attribution Of Symptoms
It has been suggested that people are ‘common-sense’ medical scientists who search for the meaning of somatic events and search to attribute it to a speciﬁc cause. Research has been presented which demonstrates that sometimes not the mere presence of symptoms impact on behavioral implications, but rather the attributions made for these symptoms. For example, almost two-thirds of the people who seek medical attention for low-level symptoms have been found to suﬀer from anxiety or depression instead. This may occur because symptoms of these emotional disorders are mistakenly thought to be indicative of a physical disease. Attributions of symptoms have also been found to aﬀect adherence to medical regimens. For example, in their study on HIV-infected women, Siegel and Gorey (1997) found decreased adherence to medication and even discontinuation of medication intake when symptoms were attributed to side eﬀects of the medicine taken. According to the authors, adherence was reduced because these symptoms were interpreted as evidence that the medication was making them sicker or had more risks than beneﬁts. Similarly, failure of medications to relieve symptoms also negatively inﬂuenced adherence because they are interpreted as not having any eﬀects.
3.1 What Guides Symptom Attribution?
Valins (1966) was the ﬁrst to suggest that the mere belief that a change in physiological ‘arousal’ had occurred would lead individuals to seek for information to label this change. In a recent demonstration, McCaul et al. (1992) found that students who were informed falsely that they were at risk for gum disease reported higher rates of gum bleeding (a symptom of gum disease) 2 days later than students in the control group who were informed that they had no gum disease. Mechanic’s notions on the medical students’ disease and Schachter and Singer’s (1962) study on the attribution of physical arousal mentioned earlier also ﬁt into this conception: When persons have access to a certain sickness label (e.g., because they just read about it or met a sick person) they will be particularly likely to attribute their physical sensations to this disease.
The explanation and attribution of symptoms is, however, also inﬂuenced by motivational factors. Speciﬁcally, it has been shown to be governed by optimistic tendencies that support a positive view of oneself and one’s physiological condition (Weinstein 1980, see Health Risk Appraisal and Optimistic Bias). This means that an individual will be less likely to interpret a novel symptom (e.g., bleeding of a mole) as a sign of a serious, life-threatening disease (e.g., skin cancer) and will be more declined to neglect it or to attribute it to a nonserious cause (e.g., a scratch). In general, the optimistic bias results in selectively seeking information that conﬁrms the less threatening hypothesis. Obviously, this benign hypothesizing results in delay to seek help (e.g., see Illness Behavior and Care Seeking).
3.2 The Inﬂuence Of Mood, Emotions, And Stress
Mood, emotions, and life stressors may be a further important determinant of symptom attribution and in consequence of care seeking and adherence. People who are in a positive mood report fewer symptoms (Salovey and Birnbaum 1989). People in a bad mood, however, report more symptoms, are more pessimistic that any actions they might take would relieve their symptoms, and perceive themselves as more vulnerable to future illness. In the presence of life stress, ambiguous physical sensations (e.g., fatigue, headaches, or stomachaches) have been found to be interpreted as signs of stress instead of illness (Cameron et al. 1995). Hereby, stress attributions are more likely for sets of symptoms that are unfamiliar, novel, and ambiguous (Pennebaker 1982).
3.3 Individual Diﬀerences In Symptom Attribution
The attribution of perceived symptoms is further determined by both individual and cultural differences. Age and gender as well as ethnic and racial diﬀerences in symptom attribution have been documented (e.g., see Aging and Health in Old Age; Culture as a Determinant of Mental Health; Health and Illness: Mental Representations in Diﬀerent Cultures; Gender and Physical Health). For example, identifying initially ambiguous symptoms as signs of a beginning disease is particularly diﬃcult in the elderly. First, older individuals experience more physical complaints than younger persons. They therefore have to evaluate the signiﬁcance of new symptoms against an increasingly complex background of age related somatic changes (Leventhal and Crouch 1997). Second, distinguishing symptoms that can be attributed to normal aging from symptoms that signal serious disease can be a complex task in old age. Importantly, the ‘wait and see’ strategy that is widely used at all ages in an attempt to rule out benign causes of ambiguous bodily signals may be more dangerous in old age because of a less vigorous immune protection. Discounting and ignoring treatable symptoms and waiting to seek help can delay diagnosis and treatment of potentially life-threatening disorders and can create unnecessary risk for morbidity and mortality. In sum, older individuals may be at greater risk because they are more likely to make aging attributions and because it has more serious consequences when they delay seeking treatment for a serious disease (Leventhal and Crouch 1997).
4. Remaining Questions
Much progress has been made in the theoretical understanding of the mental representation of symptom sets and diseases and the behavioral implications of these beliefs. Most research in this area has so far focused on just a few diseases: asthma, diabetes, and hypertension. As a consequence, the mental representation of these diseases and their consequences for self-management is, by now, quite well understood. Much more research is needed, however, with regard to the understanding of diseases that until now have received less research attention (e.g., allergies).
Clearly, social and cultural factors shape both the awareness and interpretation of physical symptoms and the behavioral responses chosen for controlling them. A key area for future work is to understand the self-regulatory processes of symptom perception and interpretation within the social and cultural context in which they occur. With a marked increase in the proportion of older people in many countries, research in this area has to move more strongly into the direction of taking a life-span perspective. A better understanding of age-related changes in the awareness and interpretation of symptoms will be vital in the process of optimizing the self-management of chronic diseases. At the same time, with many chronic diseases on the rise among children (e.g., asthma and allergies), more knowledge is needed to understand how they perceive and interpret symptoms and how contextual factors of their life situation can be worked into a better adherence to problematic medical regimens.
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