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date: 23 May 2018

Illness-Related Cognition

Summary and Keywords

Cognitions about illness have been identified as contributors to health-related behavior, psychological well-being, and overall health. Several different theories have been developed to explain how cognitions may exert their impact on health outcomes. This article includes three theories: the Health Belief Model (HBM), the Theory of Planned Behavior (TPB), and the Common Sense Model (CSM), with the primary focus on the CSM. The HBM posits that cognitions regarding susceptibility to a health threat, the severity of the threat, and the benefits and costs associated with behavior, will determine whether or not a behavior is performed. In the TPB, behavior is thought to be a consequence of intention to act, which is shaped by attitudes regarding a behavior, subjective norms, and perceived behavioral control. The Common Sense Model (CSM) proposes that individuals form cognitive representations of illness (known as illness perceptions) as well as emotional representations, which are key determinants of coping behaviors to manage the illness. Coping behaviors are theorized to have direct relationships with physical and psychological health outcomes. Cognitive representations encompass perceptions regarding the consequences posed by the illness, its timeline, personal ability to control the illness, whether the illness can be cured or controlled by treatment, and the identity of the illness (including its label and symptoms). Emotional representations reflect feelings such as fear, anger, and depression about the illness. The development of illness representations is influenced by a number of factors, including personal experience, the nature of physical symptoms, personality traits, and the social and cultural context. Illness cognitions can vary considerably between patients and health care professionals. There are a number of methods to assess illness-related cognitions, and increasing evidence that modifying negative or inaccurate cognitions can improve health outcomes.

Keywords: beliefs, cognitions, health, illness, perceptions, interventions

Introduction

Illness cognitions can be defined as people’s thoughts, beliefs, and perceptions about illness. In many theories in health psychology, illness cognitions are central to how people behave in response to health threats. This article outlines three popular theories of illness-related cognition. First, the Health Belief Model (HBM; Rosenstock, 1974) is briefly described as well as the broader conceptualizations proposed by the Theory of Planned Behavior (TPB; Ajzen, 1991). Next, attention is turned to the Common Sense Model of illness (CSM; Leventhal, Meyer, & Nerenz, 1980), including the specifications of the model, the way in which components may be assessed, and a summary of the empirical findings demonstrating links between perceptions of illness, coping behaviors, and health outcomes. Characteristics of interventions designed to modify illness perceptions are identified, and research results supporting the effectiveness of these interventions is provided. To conclude, the clinical implications associated with illness-related cognitions are discussed.

Theories of Illness Cognition

Individuals differ in the extent to which they engage in health-related behaviors, such as seeking medical care for symptoms, adhering to prescribed medications, performing exercise, smoking cigarettes, or drinking alcohol. A number of theories have been developed in an effort to understand and explain variation in health behaviors. Several of these theories have identified cognitions about health and illness as the drivers behind behavior.

The Health Belief Model was primarily developed to understand why healthy people did not adopt preventive health behaviors, such as having a vaccination, and to motivate behavior change. The Theory of Planned Behavior was developed to understand the ability of attitudes to predict all behaviors that people have some control over, and has been applied to health behaviors, particularly to public health. On the other hand, the Common Sense Model was developed in people who were already experiencing symptoms of illness to understand how they made sense of their experiences and how their lay understandings guided the adoption of behaviors to reduce illness threat.

The Health Belief Model

One of the first theories to acknowledge the importance of illness-related cognition was the Health Belief Model, which was first developed in the 1950s and further refined in the following decades (Rosenstock, 1974). The model proposes that the likelihood of a particular behavior depends on an individual’s perceived susceptibility to a health threat, the perceived severity of the threat, the perceived benefits resulting from the behavior, and the associated costs and barriers. Although perceived susceptibility and severity are motivators, the behavior will only be performed if the individual considers it to be beneficial. Furthermore, perceptions of costs and barriers associated with the behavior can override perceived benefits. The model proposes that cognitions involve cost-benefit analyses, the outcome of which determines behavior (Rosenstock, 1974). Cues to action are thought to be essential, and can be either internal (such as physiological sensations) or external (such as information from close others, the media, or health care professionals). The influence of cues on behavior depends on individual differences in perceived susceptibility, seriousness, benefits, and barriers (Rosenstock, 1974). Self-efficacy is another component of the HBM and reflects the degree to which an individual perceives that he or she can successfully perform a particular behavior; greater self-efficacy is related to a greater likelihood of health behavior change (Rosenstock, Stretcher, & Becker, 1988). The model also considers the role of other individual characteristics, including demographic, cultural, and personality variables, albeit indirectly via their effect on perceptions of susceptibility, seriousness, benefits, and barriers (see Figure 1).

Illness-Related CognitionClick to view larger

Figure 1. The Health Belief Model adapted from Janz and Becker (1984).

Empirical support for the HBM has been provided by a number of retrospective and prospective studies, with a particularly large evidence base linking perceived barriers to engagement in preventive health behaviors, adherence, and clinic attendance (including delays in seeking care) (Harrison, Mullen, & Green, 1992; Janz & Becker, 1984). A meta-analysis of 18 longitudinal studies investigating the capacity of the HBM to predict behavior found that perceptions of both benefits and barriers were consistently related to a diverse range of behavioral outcomes (Carpenter, 2010). However, perceptions of susceptibility and illness severity were weak predictors of behavior, suggesting that the direct relationships specified between these variables in the HBM may not exist. Furthermore, no formalization of HBM components has been developed across studies resulting in large variation with respect to the way in which the model is interpreted and tested (Abraham & Sheeran, 2007).

The Theory of Planned Behavior

Another model that has been used to conceptualize cognitions about illness is the Theory of Planned Behavior (Ajzen, 1991), originally known as the Theory of Reasoned Action (Ajzen & Fishbein, 1980). According to this model, behavior is the result of intention, which develops based on personal attitude toward the behavior, subjective norms, and perceived behavioral control (self-efficacy), as shown in Figure 2. Attitudes toward a particular behavior will be determined by an individual’s positive or negative evaluation of the behavior as well as the consequences they believe enacting the behavior may have. Subjective norms reflect an individual’s perceptions of the social pressures relating to the behavior, including judgments perceived to be held by significant others. The unique contribution of attitudes and subjective norms to intention to act depends on the relative weighting each is given by the individual. Personality factors and demographic variables are also considered, but are proposed to have indirect effects on behavior through their relationship with perceptions of subjective norms and intentions.

Illness-Related CognitionClick to view larger

Figure 2. Diagram of the theory of planned behavior adapted from Ajzen (1991).

A key strength of the TPB is that it acknowledges the important role of social influences on behavior (Rivis & Sheeran, 2010). Nevertheless, a meta-analysis of 185 studies found that while attitudes, subjective norms, and perceived behavioral control explained 39% of the variance in intentions and 27% of the variance in behavior, subjective norms made the smallest contribution to both (Armitage & Conner, 2001). Conversely, perceived behavioral control (or self-efficacy) was the strongest predictor of both intentions and behavior, contributing to these outcomes independently of other variables in the model. The TPB has been applied extensively to the health context, with evidence that the model is effective at explaining intentions to engage in health-related behavior (Godin & Kok, 1996; Hagger, Chatzisarantis, & Biddle, 2002). However, intentions to engage in behavior have only been moderately correlated with actual behavior (Sniehotta, Presseau, & Araujo-Soares, 2014). Furthermore, the predictive power of the TPB has been found to vary across different health-related behavior categories (Godin & Kok, 1996). There are concerns that the model does not make clear which values or beliefs are of relevance for the evaluation of health actions (Hardeman et al., 2002), and that the role of environmental factors or cues to act are largely ignored.

The Common Sense Model

The Common Sense Model (CSM) of illness representations (Leventhal et al., 1980) is another framework for understanding the relationships between illness-related cognitions, behavior, and health outcomes. This model developed in response to research testing the fear-drive reduction model (Dollard & Miller, 1950), which proposed that individuals engage in health-related behavior in order to reduce their fear. However, effects of fear on behavior were found to be short term. It was determined that in order for a fear message to induce enduring behavior change, an action plan must also be provided specifying how, where, and when to perform behavior (Leventhal & Niles, 1965). This led to the creation of the CSM, a model in which people are viewed as active problem solvers rather than passive recipients of disease and medical treatment.

The CSM proposes that when individuals are faced with a health threat (such as an illness or physical symptoms) they simultaneously form cognitive and emotional representations of the threat (Leventhal, 1970). Cognitive and emotional representations are processed in parallel to guide the adoption of actions to reduce the threat. Finally, patients appraise the effectiveness of their actions on their health outcomes, and this leads to adjustment of their initial illness representations via a feedback loop (see Figure 3).

Illness-Related CognitionClick to view larger

Figure 3. Leventhal’s Common Sense Model adapted from Diefenbach and Leventhal (1996).

Five key components of illness cognitions have been identified from open-ended interviews with patients (Meyer, Leventhal, & Gutmann, 1985). These include illness identity (the label and symptoms that a person associates with their condition), timeline (how long the illness is anticipated to last and the course it will take), cause (ideas about what has caused the illness), control (the degree to which a person thinks that treatment can cure or control the illness, as well as perceived personal ability to control the illness), and consequences (the effects of the illness on different life domains such as work, family, life style, and finances). Another kind of illness perception is coherence (whether the illness makes sense to the patient overall) (Moss-Morris et al., 2002). Emotional representations of illness include reactions such as fear, concern, anger, and depression. Patients with the same illness or condition can have different cognitive and emotional representations, which can lead to differences in behavior and health outcomes (Petrie & Weinman, 2006).

The Common Sense Model specifies that illness representations are guided by diverse sources of information, including information from previous social communications and cultural knowledge, information obtained from close others or those perceived to be authoritative sources, and somatic information based on current symptoms and previous experiences with illness (Hagger & Orbell, 2003). The way in which this information shapes an individual’s perceptions will depend on a number of contextual considerations including personality type and cultural background. Therefore, the CSM integrates individual beliefs about health and illness with medical and environmental information, cultural and social factors, and affective responses.

Strengths and Limitations of the Different Models

The CSM has several advantages over other models of illness-related cognition (Diefenbach & Leventhal, 1996). First, the CSM considers the multiple sources of information that an individual must integrate before making a decision about his/her physical and psychological well-being. Furthermore, it is the only model that places illness representation at the center of cognitive and emotional processes that influence an individual’s evaluation of well-being and health. The dynamic nature of the CSM considers the variation in factors that contribute to the development of illness representations. Finally, the CSM is a useful framework for testing theories of health and behavior, and there is extensive evidence to support the specifications of the CSM in a broad variety of different patients (Broadbent et al., 2015; Hagger & Orbell, 2003; Richardson, Schuz, Sanderson, Scott, & Schuz, 2016).

Systematic reviews and meta-analyses have identified relationships between illness perceptions, coping, and health outcomes among individuals with physical illness. The majority of these relationships are representative of moderate to large effect sizes (Dempster, Howell, & McCorry, 2015). This contrasts with small effect sizes reported in meta-analyses investigating the HBM (Abraham & Sheeran, 2007). The effect sizes reported in meta-analyses investigating the TPB are larger than the HBM, with multiple correlations ranging from .59 to .71 (Ajzen, 1991; Albarracin, Johnson, Fishbein, & Muellerleile, 2001; Armitage & Conner, 2001; Godin & Kok, 1996; Hagger et al., 2002). However, components of both the HBM and TPB have demonstrated limited utility at directly predicting behavior, suggesting concomitant limitations in interventions based on these models. Indeed, the efficacy of interventions based on the HBM (which primarily involve using information provision and verbal persuasion to target relevant cognitions) has been variable (Jones, Smith, & Llewellyn, 2014). Intervention studies have been of mixed quality, and assessments of beliefs have rarely been made pre and post-intervention preventing investigation of mediation pathways that could provide further empirical support for the model (Jones et al., 2014). Similarly, there are few examples of effective interventions based on the TPB, which aim to target individual attitudes, subjective norms, and perceived or actual behavioral control (Hardeman et al., 2002). Most studies have not allowed for identification of the theoretical components specifically targeted by the intervention under investigation. Furthermore, mediation analyses to test the extent to which the impact of the intervention on behavior can be explained by these components have rarely been performed. In contrast, a number of interventions based on the CSM have been developed and tested, with evidence for their effectiveness at modifying illness perceptions, health behavior, and health outcomes provided by randomized controlled trials (RCTs) (e.g., Broadbent et al., 2009a; Petrie, Cameron, Ellis, Buick, & Weinman, 2002).

While the CSM has proven to be a valuable model for understanding illness-related cognition and its influences on behavior and health, it is important to acknowledge several limitations. CSM components are increasingly used to predict variation in patient physical and psychological well-being, which is an extrapolation of the original model (Dempster et al., 2015). This has led to some confusion regarding the role of coping strategies, which were initially conceptualized as specific behavioral outcomes (such as medication adherence, clinic attendance, and self-care). More recently, coping has been interpreted as a broad concept that encompasses cognitive and emotional approaches an individual might use to manage their illness. Consequently, there is variation in researcher perspectives regarding how the elements of the CSM relate to one another (specifically, whether coping is hypothesized to mediate the relationship between illness perceptions and health outcomes). While several studies have investigated the degree to which relationships between illness perceptions and outcomes are mediated by coping, others have examined direct relationships between illness perceptions and physical and psychological well-being without measuring coping behavior. These differences in the operationalization of the model may contribute to misleading findings (Dempster et al., 2015). Concerns have been raised regarding the simultaneous investigation of illness perceptions and coping given the potential for significant overlap between these constructs. Specifically, there is some evidence to suggest that responses on measures of illness perceptions are confounded by appraisals of coping (Dempster & McCorry, 2012; McCorry, Scullion, McMurray, Houghton, & Dempster, 2013). Another limitation associated with the CSM is that the majority of studies examining the model have employed correlational designs that preclude interpretations of the causal relationships between variables (Hagger & Orbell, 2003). Furthermore, while CSM components can explain a significant proportion of variance in outcomes, particularly psychological distress, there remains substantial unexplained variance. This suggests that psychological variables additional to those specified in the CSM may be important to consider (Paddison, Alpass, & Stephens, 2010). For example, personality variables may moderate associations between illness perceptions and well-being.

Assessment of Illness Cognitions

Although interviews can be used to assess cognitions, validated questionnaires are more useful for research and allow more standardized assessment. The Implicit Models of Illness Questionnaire (IMIQ) has a factor structure that shares similarities with the CSM (Schiaffino & Cea, 1995). The questionnaire was able to show that illness representations differed across individuals depending on personal relevance and personal experience associated with illness. While this questionnaire is useful for illuminating broad representations of illness, other questionnaires allow for the investigation of specific cognitive and emotional perceptions. An example is the Illness Perception Questionnaire (IPQ) (Weinman, Petrie, Moss-Morris, & Horne, 1996), which is comprised of 38 Likert scale items designed to measure the five core illness perception domains. A revised version of the IPQ, the IPQ-R, assesses a broader range of illness perception domains across 84 items (Moss-Morris et al., 2002). This questionnaire divides perceptions of control into those relating to treatment (e.g., “My treatment can control my illness”) and personal control (e.g., “I have the power to influence my illness”), and also assesses perceived cyclical nature of illness, emotional representations, and illness coherence. The Brief Illness Perception Questionnaire (Brief IPQ) contains just nine items and is useful when assessment needs to be quick—it takes just a few minutes to complete (Broadbent, Petrie, Main, & Weinman, 2006). Researchers are encouraged to adapt the questions to be specific to the illness and treatments faced by the particular patient group of interest. Single item scales do have limitations if missing data occurs and internal reliability indices cannot be calculated. Questionnaires often limit patients to forced choice responses and interviews may provide richer data and be clinically useful if time permits.

Evidence suggests that patients not only have cognitive and emotional representations of their illness, but also visual representations. An innovative way to access these perceptions is to ask patients to draw their illness. This can provide insights into patients’ misconceptions of their condition. For example, some heart attack patients believe that a blockage has occurred in the large vena cava rather than in the small coronary arteries (Broadbent, Petrie, Ellis, Ying, & Gamble, 2004). Furthermore, the amount of damage patients drew on their heart after the heart attack was a better predictor of time to return to work than biological indicators of damage were (Broadbent et al., 2004). Drawn damage has also predicted higher levels of acute distress and post-traumatic stress symptoms (Princip et al., 2015). Drawings have been found to index perceptions in other illnesses, including headache (Broadbent, Niederhoffer, Hague, Corter, & Reynolds, 2009). Longitudinal research has linked drawings of damage to the brain by people with traumatic brain injury to post-concussive symptoms six months later (Jones, Kydd, et al., 2016). These findings suggest that patient drawings can be used to identify patients with negative perceptions of their condition, and who are at greatest risk of poor recovery.

Empirical Research Using the CSM

Perceptions of illness are highly individual, differing among patients with the same illness and between patients with different illnesses (Petrie & Weinman, 2006). Furthermore, the cognitive and emotional representations of patients can be very different to those of their health professionals, which likely stems from differences in understanding (Weinman, Yusuf, Berks, Rayner, & Petrie, 2009).

Patient perceptions have been found to change in response to feedback from medical testing and diagnostic information (Devcich, Ellis, Broadbent, Gamble, & Petrie, 2012). Those who receive a favorable outcome tend to have a rapid change to more positive perceptions, reporting less concern, fewer perceived consequences, and higher levels of personal and treatment control. Nevertheless, there are a number of patients who are not reassured despite receiving normal test results, which can lead them to continue seeking unnecessary medical investigations and treatment (Petrie & Weinman, 2012).

Illness Perceptions and Behaviors

The CSM proposes that cognitions about illness exert their effects on an individual’s health outcomes by impacting coping behavior. Coping refers to behaviors used to manage or prevent threat, harm, and loss, and accompanying feelings of distress (Carver & Connor-Smith, 2010). Several important coping distinctions have been identified in the literature, including distinctions between problem-focused and emotion-focused coping (Lazarus & Folkman, 1984), and engagement and disengagement coping (Skinner, Edge, Altman, & Sherwood, 2003). Problem-focused coping refers to actions designed to directly remove or address a stressor, while emotion-focused coping refers to efforts directed at managing the emotions the stressor has caused. Engagement- or approach-oriented coping refers to behaviors aimed at confronting a stressor and the emotional responses that it elicits (Taylor & Stanton, 2007). An example of this type of coping might be attendance at a rehabilitation or screening program. In contrast, disengagement or avoidance coping reflects attempts to escape the stressor and its associated emotions. Avoiding discussing and thinking about an illness, or delaying seeking medical care, are examples of avoidant coping behavior.

Meta-analyses and reviews of the CSM (see Broadbent et al., 2015; Hagger & Orbell, 2003; Richardson et al., 2016) suggest that controllability is a key perception—when patients perceive their illness to be controllable they are more likely to use engagement coping strategies. The dimensions of illness perceptions are inter-correlated and it is often important to consider illness perceptions together rather than in isolation. It is also important to interpret perceptions with regard to the characteristics of the specific illness. For example, meta-analysis found heart attack patients who held perceptions that their heart condition was symptomatic and had more consequences, and who felt their condition made sense and was controllable, were more likely to attend cardiac rehabilitation classes than others (French, Cooper, & Weinman, 2006).

Individuals who perceive their illness as uncontrollable, chronic, and to be associated with many symptoms and consequences more frequently engage in avoidance coping and denial (Hagger & Orbell, 2003). For example, Cartwright, Endean, and Porter (2009) showed that patients with alopecia who perceived the condition to have serious consequences and a strong emotional impact were more likely to report using avoidant strategies to cope. More recently these relationships have been observed in patients with chronic heart failure, with perceptions of a strong illness identity and low control significantly associated with an avoidant coping style (Nahlen Bose, Elfstrom, Bjorling, Persson, & Saboonchi, 2016). Among patients with cancer, emotional representations have been found to have the strongest relationships with avoidance (Richardson et al., 2016). In other work, women with more negative perceptions of breast cancer were more likely to miss treatment sessions than those who had more positive views (Iskandarsyah, de Klerk, Suardi, Sadarjoen, & Passchier, 2014).

A meta-analytic review of 27 studies provided evidence that relationships between causal attributions and psychological adjustment in individuals with physical illnesses were mediated by coping (Roesch & Weiner, 2001). Specifically, internal, unstable, and controllable attributions were indirectly related to positive psychological adjustment because of their associations with approach and emotion-focused coping behaviors. In contrast, causal attributions that were stable and uncontrollable were indirectly related to negative psychological adjustment because of their associations with avoidance coping.

Illness Perceptions and Health Outcomes

A meta-analysis of studies using the Brief IPQ found that illness perceptions predicted future mental and physical health outcomes in 19 of 20 longitudinal studies (Broadbent et al., 2015). Perceptions of consequences were a particularly strong predictor, with the perception of many negative consequences predicting less reassurance following normal exercise stress test results (Donkin et al., 2006), reduced quality of life, and higher levels of depression following cardiac evaluation (Jonsbu, Martinsen, Morken, Moum, & Dammen, 2012), greater depression among patients with bipolar disorder (Lobban et al., 2013), slower return to work following cancer treatment (Cooper, Hankins, Rixon, Eaton, & Grunfeld, 2013) and after a sickness absence (Giri, Poole, Nightingale, & Roberston, 2009), and higher levels of disability in individuals with gout (Dalbeth et al., 2011). Perceptions of illness identity were also important, predicting many of the previously mentioned outcomes in addition to post-traumatic stress disorder (PTSD) following first onset acute coronary syndrome (Marke & Bennett, 2013) and post-concussion syndrome among individuals who had sustained a mild traumatic brain injury (Hou et al., 2012). Perceptions of high personal and treatment control positively influenced several outcomes. For example, high perceived treatment control predicted better recovery from surgery (Bethge, Bartel, Streibelt, Lassahn, & Thren, 2010) and greater weight loss (Hollywood & Ogden, 2011). Emotional representations, including levels of concern, had some predictive capacity; this largely related to psychological well-being but also return to work and recovery from surgery (Bethge et al., 2010; Giri et al., 2009). Perceptions of coherence (understanding) had the least predictive power compared to other items on the Brief IPQ (Broadbent et al., 2015).

The results of this meta-analysis confirm those of an earlier systematic review that identified perceptions of consequences and illness identity were most strongly related to health outcomes, including role, social, and physical functioning, psychological well-being, and vitality (Hagger & Orbell, 2003). Individuals who perceived their illness to have serious consequences and a strong identity scored lower on measures of adaptive outcomes and higher on measures of maladaptive outcomes. Health outcomes were also associated with perceptions of control over illness. Greater perceived control (particularly treatment control) was related to better psychological well-being and social functioning and greater vitality. Although this review included both cross-sectional and longitudinal studies, a broad number of measures assessing illness perceptions were considered, such as the IPQ, the IPQ-R, the Implicit Models of Illness Questionnaire (IMIQ; Turk, Rudy, & Salovey, 1986) and several non-generic instruments. Consistent with both the reviews of Broadbent and colleagues (2015) and Hagger and Orbell (2003), a recent systematic review and meta-analysis of illness perceptions among patients with cancer found that high levels of perceived consequences and illness identity were associated with high levels of psychological distress, and low levels of quality of life and overall functioning (Richardson et al., 2016). Furthermore, high levels of perceived control were associated with low distress and better quality of life and functioning, while perceptions of illness coherence had variable associations with patient outcomes.

Family Members’ Illness Perceptions

Spouses, family members, and close friends of a patient (known as informal caregivers) develop their own understanding and representations of the patient’s illness (Quinn, Jones, & Clare, 2016). This is to be expected in light of evidence that caregivers perceive the patient’s illness and its associated challenges to have a strong impact on their own lives. Family caregivers frequently report changes in family roles and dynamics and experience higher levels of depression, anxiety, and stress, as well as worse physical health than non-caregivers (Pinquart & Sorensen, 2003). The illness representations held by these caregivers are important to consider given that they can influence the way in which caregivers respond to the patient’s condition, including the forms of support that they provide (Searle, Norman, Thompson, & Vedhara, 2007) and their emotional reactions (Lobban, Barrowclough, & Jones, 2003). Caregiver representations are typically measured using an adapted version of an illness perception questionnaire, in which items are reworded to capture caregiver perceptions of the patient’s illness.

Many studies have documented relationships between caregivers’ illness perceptions and patients’ adaptation to illness. Collectively, these studies suggest that negative caregiver beliefs, particularly those that minimize the seriousness of a patient’s illness, are related to lower scores on measures indexing patient physical, social, and sexual functioning, psychological well-being, and vitality (Dempster et al., 2011a; Figueiras & Weinman, 2003; Heijmans, de Ridder, & Bensing, 1999; Kaptein et al., 2007; Searle et al., 2007; Sterba et al., 2008; Twiddy, House, & Jones, 2012). This includes a range of different illness groups, including patients and caregivers managing cancer, MI (myocardial infarction), Huntington’s disease, diabetes, rheumatoid arthritis, and stroke.

There is growing evidence that dissimilarities in patient and caregiver illness perceptions are particularly detrimental for patients’ well-being. For example, patients with head and neck cancer reported the highest levels of depression and anxiety and lowest quality of life when their perceptions differed from those of their caregivers (Dempster et al., 2011a; Richardson, Morton, & Broadbent, 2015). Discrepancies in patient-caregiver illness perceptions were related to both patient and caregiver psychological distress following stroke (Twiddy et al., 2012), as well as negative impacts on physical, social, and psychological well-being in patients with chronic fatigue syndrome and Addison’s disease (Heijmans et al., 1999) and less adaptive coping strategies in patients with cardiac disease (Karademas, Zarogiannos, & Karamvakalis, 2010). In contrast, greater similarity or congruence between patient and caregiver illness perceptions has been related to positive patient outcomes (e.g., Figueiras & Weinman, 2003; Sterba et al., 2008).

Discrepancies between patient and caregiver perceptions are not uncommon, with numerous studies identifying that caregivers tend to hold more negative views of illness than do patients (e.g., Dempster et al., 2011a; Kaptein et al., 2007; Twiddy et al., 2012). This may be because caregiver perceptions are more accurate than those of patients, who have been shown to hold self-protective beliefs relating to illness (Jemmott, Ditto, & Croyle, 1986). Alternatively, greater negativity among caregiver perceptions could be a consequence of the high levels of stress and negative affect that these individuals report (Pinquart & Sorensen, 2003), or due to their concern for the patient. It is likely that when patients and caregivers have differing perceptions, the support that caregivers provide does not match up to that which is desired by the patient, which has a negative impact on patient adjustment and recovery.

Although caregiver perceptions tend to be more negative than those of patients, they are highly individual and have been found to vary across different health conditions. For example, mothers of girls with anorexia perceived the illness to be more chronic, understandable, and controllable than mothers of girls with Type 1 diabetes (Sim & Matthews, 2013). Other research suggests that negative caregiver perceptions are not only related to patient outcomes but also caregivers’ own well-being (e.g., Dempster et al., 2011b; Fortune, Smith, & Garvey, 2005). There is also preliminary evidence to suggest that patient illness perceptions are related to caregiver adjustment. Illness perceptions of patients with mild cognitive impairment were associated with both patient and caregiver emotional distress (Lingler, Terhorst, Schulz, Gentry, & Lopez, 2016), and dissimilarity between patient and caregiver perceptions of psoriasis contributed to caregiver depression and worry (Richards et al., 2004).

Interventions to Change Illness Perceptions

The Common Sense Model of illness provides a theoretical framework in which to change illness perceptions to influence behaviors and health outcomes. Illness perception interventions are typically brief, delivered when patients are in a window of vulnerability, and often involve individual sessions with a health psychologist (Broadbent, 2010). One of the key components is to first assess illness perceptions, and then to personalize the intervention around these perceptions. Causal models are expanded, and patients and caregivers are provided with personalized information with the goal to improve understanding and eliminate inaccurate or unrealistic perceptions. Coping behaviors are also addressed in the sessions, with an action plan developed documenting where, when, how, and with whom behaviors (such as exercise) can be implemented. Beliefs about medications are also addressed and explanations of how medications work are provided. Modifying perceptions can improve patient emotional responses to illness, reducing feelings of fear by helping to ensure that the illness seems manageable (Broadbent & Richardson, 2014).

One of the first randomized controlled trials showed that targeted illness perceptions in patients with MI facilitated subsequent recovery (Petrie et al., 2002). Sessions were designed to alter perceptions of MI and involved the development of an action plan specifying adaptive coping strategies. The intervention was successful in promoting positive changes in patient illness perceptions, and resulted in patients feeling better prepared to leave the hospital, and they returned to work at a faster rate. Patients who received the intervention also reported fewer angina symptoms compared to those in the control group (Petrie et al., 2002). When modifying the intervention to include spouses of MI patients, positive changes in spousal perceptions were observed (Broadbent et al., 2009a, 2009b). Spouses in the intervention group reported less anxiety relating to patient activities and medications, lower distress about patient symptoms, and less worry about the illness overall, with these results maintained over time. The findings demonstrate the applicability of self-regulatory interventions to not only patients but also their family members.

Self-regulatory interventions have several advantages over other intervention approaches, including a strong basis in theory. This allows for predictions to be made regarding the impact of different techniques on health and well-being (Broadbent, 2010). Furthermore, self-regulatory interventions enable modifiable factors (cognitions and behaviors) to be addressed in an effort to improve patient outcomes as opposed to less modifiable factors, such as symptoms, personality, or socioeconomic status. Self-regulatory interventions are also highly cost effective because they require few resources and can be delivered across a relatively short period of time compared to other psychological treatment approaches. This limits the burden of participation.

Interventions to modify illness perceptions have been found to improve health outcomes across a number of different conditions. Two in-home sessions with a health psychologist resulted in significantly lower glycated hemoglobin levels, as well as improvements in illness perceptions, psychological well-being, diet, exercise, and family support among patients with poorly controlled diabetes (Keogh et al., 2011). Similarly, an illness perception intervention conducted across two hour-long sessions increased daily walking among individuals experiencing intermittent claudication (Cunningham, Swanson, O’Carroll, & Holdsworth, 2012). The difference in walking was observed between intervention and control group participants four months post-intervention and continued to be observed two years later (Cunningham, Swanson, Holdsworth, & O’Carroll, 2013). An illness perception intervention reduced anxious preoccupation and fear of cancer recurrence in the short term in patients successfully treated for oral or oropharyngeal cancer (Humphris & Rogers, 2012).

Studies investigating the effectiveness of interventions to change illness perceptions by applying principles of cognitive behavior therapy (CBT) have proven particularly successful. For example, targeting CBT to the implicit illness models of patients with psoriasis resulted in decreases in perceptions of symptom frequency and severity, consequences, and attributions to emotional causes (Fortune, Richards, Griffiths, & Main, 2004). Patients with IBS reported improved IBS symptom severity and social adjustment six months after receiving CBT in comparison to patients who received treatment as usual (Chilcot & Moss-Morris, 2013). Positive changes in illness perceptions were found to mediate the improvement in outcomes observed for patients in the intervention group.

Some interventions have used technology or visual demonstrations to modify perceptions of treatment and promote better adherence. For example, a concrete demonstration of how phosphate medication works improved hemodialysis patients’ knowledge and understanding of treatment, and increased perceived medication efficacy (Karamanidou, Weinman, & Horne, 2008). A tailored text message program delivered to individuals using asthma preventer medication improved adherence over time by increasing beliefs regarding the necessity of the medication, as well as perceptions of control and illness timeline (Petrie, Perry, Broadbent, & Weinman, 2012).

Technology is increasingly employed to expand the reach of delivery and cost effectiveness of illness perception interventions. A recent intervention study used a computer tablet to show patients with acute coronary syndrome animations of how plaques form and rupture, subsequent damage to the muscle wall of the heart, and how this affected its beating, as well as the way medication, diet, and exercise could work inside the arteries to reduce cholesterol and plaque formation (Jones, Ellis, Nash, Stanfield, & Broadbent, 2016). This 15-minute bedside intervention resulted in more accurate and adaptive illness perceptions as well as lower levels of cardiac avoidance, greater exercise, and faster return to normal activities compared to a control group.

Further development and testing of these interventions are needed in order to determine how, where, and when it is most appropriate to intervene across different patient populations (Broadbent, 2010). It may be possible to apply self-regulatory interventions not only among those managing physical health conditions but also those with mental health problems (Petrie, Broadbent, & Kydd, 2008).

Clinical Implications

Evidence suggests that efforts to assess and address illness-related cognitions should be integrated into routine clinical care to promote use of effective self-management behaviors and adjustment to chronic illness (Petrie & Weinman, 2012). By assessing patient perceptions using the instruments available, it is possible for health care professionals to gain a picture of patients’ understanding of their conditions, including any misconceptions. Such misconceptions are to be expected given the broad variety of medical information that patients can access from the media, Internet, and other individuals, as well as the lack of formal medical education for most patients (Broadbent, 2010). Patients’ understanding of illness is frequently more limited than what medical professionals assume. Furthermore, it is difficult to apply population-based risk estimates to personal risk. For example, MI patients have largely inaccurate perceptions of their future risk based on statistical models (Broadbent et al., 2006), and both patients and the general population are unable to identify the location of key body organs, even when they are implicated in an individual’s medical condition (Weinman, Yusuf, Berks, Rayner, & Petrie, 2009). These findings suggest that it is important for health care professionals to understand patient illness representations, including any inaccuracies in perceptions, so that these may be addressed and informed decision making can take place (Broadbent, 2010).

Results from meta-analyses suggest that there are particular profiles of illness perceptions that place individuals at greatest risk of poor health outcomes (Petrie & Weinman, 2012). Although there is variation across different types of illness, patients who perceive many negative consequences and low control may experience greater emotional distress and be less likely to engage with treatment. By identifying these patients, health care professionals are in a position to intervene.

Summary and Conclusion

In conclusion, several theories have investigated the role of illness cognitions in influencing health behaviors and outcomes. The Common Sense Model (Leventhal, Meyer, & Nerenz, 1980) is one of the most valuable models for understanding patient cognitions about illness. It proposes that patients form parallel cognitive and emotional representations about their condition, which guide behaviors and affect subsequent physical and psychological well-being. Relationships between these variables have consistently been documented, both cross-sectionally and over time. The CSM acknowledges the important role of context, including the illness perceptions of family caregivers. Interventions designed to modify illness perceptions are effective at promoting recovery and adaptation to illness. Further studies are needed to determine when and how to deliver these interventions, and to investigate how they may best be adapted across different illness groups.

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