Original ArticleAssessing illness representations of breast cancer: A comparison of patients with healthy and benign controls
Introduction
In the area of psychosomatic research, the illness perception approach has become extremely influential over the last few years, offering a new paradigm for psychosomatics [1]. The predominant theoretical framework adopted by this approach is the self-regulation model [2], [3]. This model proposes that people have representations of illness (or illness cognitions), which are used for interpreting bodily changes and planning their health and illness behavior. It describes four components of illness representations, namely, identity (label, symptoms, and signs the individual views as being part of the disease), cause (individual's ideas about the etiology and the likely cause or causes of the disease), time line (likely duration of the health problem and expectations about the course of the illness), and consequences (individual's beliefs about illness severity and the likely impact upon physical, emotional–psychological, social, and economic functioning). A fifth component, cure/control, which relates to the extent to which individuals believe that their condition is curable, or at least controllable, was added by Lau and Hartman [4]. The model suggests that people are active processors of information. Illness representations are derived from a number of sources, i.e., personal experiences, past experiences with illness, and information obtained in contact with other people, from the social environment, from friends, relatives, the health professionals, as well as the media and the culture. Such representations can be highly idiosyncratic and very different to the medical view of an illness.
Several studies, using a variety of methodologies across a range of clinical conditions, have confirmed the consistency and validity of the five representation dimensions [5], [6], [7], [8], and the dimensions have been shown to have important implications for how patients conceptualize and cope with their condition [2]. An individual's illness representations have also been shown to predict decisions to engage in screening behaviors and seek health care [3], [9], [10], to comply with medical advice [11], to return to work [12], [13], and to help cope successfully with chronic illness [14], [15]. On the other hand, illness representations are influenced by such factors as socioeconomic status and age. In a sample of general female population, Grunfeld et al. [16] found that older women aged over 75 demonstrated inaccurate causal beliefs of risk factors for breast cancer (identified fewer risk factors for this disease), distorted identity beliefs (perceived fewer serious breast changes as symptoms of breast cancer), and more negative perceived consequences of this illness (strongly believed that breast cancer would result in disfigurement).
Illness representations of cancer may comprise inaccurate information, misconceptions, or negative conceptualizations of the disease. In an Irish study of public attitudes and beliefs about cancer [17], the word “cancer” was associated with inevitable death, terror, suffering, devastation, shock, incurability, unfairness, and helplessness. In an American study assessing lay people's perceptions of cancer [18], cancer was described as the most painful condition, less understood medically, and less preventable than heart disease, diabetes, or AIDS. Breast cancer, in particular, had strong social representations due to its severe implications on women's appearance, attractiveness, and self-image [19].
Buick [20], exploring illness perceptions in breast cancer patients and laypersons, found that physically healthy women had stronger beliefs concerning the role of internal/self-blame and chance causal attributions than did breast cancer patients. Breast cancer patients were “double stigmatized” for having cancer and causing cancer. Moreover, laywomen's perceptions of the duration and impact of treatment of breast cancer were overestimated compared with that of radiation cancer patients. Healthy women underestimated cure/control possibilities as compared with that of radiation patients.
Healthy women's representations of breast cancer are worth exploring because inaccurate representations may have two predominant illness-related outcomes. First, exaggerated or negative perceptions of breast cancer appear to be related to coping behaviors and illness outcomes [21] and are largely responsible for healthy women's failure to adhere to appropriate preventive and early detection behaviors. In one qualitative study [22], underscreeners for breast cancer were more likely than the screeners to comment that they would have symptoms if they had breast cancer. With regard to the treatment/cure of breast cancer, the screeners mentioned more people who had been cured, while the underscreeners spoke about not having treatment if they had cancer. Understanding healthy women's perceptions of breast cancer may be useful for the promotion of preventive health activities.
The second outcome concerns the impact of healthy women's perceptions on the individual diagnosed with cancer. When little is known about the causes of breast cancer, healthy women may become more frightened by it and develop myths to try to explain it. They may come to blame the patient for getting breast cancer because she did not prevent or control it. They may develop negative attitudes toward cancer patients. If they held more accurate perceptions of the etiology, controllability, and treatment of breast cancer, then unrealistic expectations might not be placed on patients.
The present study was primarily designed to compare healthy women's and breast cancer patients' representations of breast cancer. It was expected that nonmalignant women would hold more negative beliefs regarding the serious consequences and the cure/control of breast cancer, while they would hold stronger beliefs concerning the role of internal causal attributions than breast cancer patients would. Because the Illness Perception Questionnaire (IPQ) had not been validated in the Greek version, a secondary aim of this study was to validate this instrument.
Section snippets
Participants and procedure
The study was performed from June 2001 to February 2002 at the outpatient breast clinic of St. Savvas public cancer hospital in Athens. A sample of 94 consecutive women free from any breast pathology and 53 women with benign breast conditions (cysts, fibrocystic breast disease) was recruited on arrival at the clinic, before medical consultation. These women had come to the medical centre for a routine breast screening, for a follow-up repeat physical breast examination, or for a mammography.
Results
The demographic characteristics of the patient and the nonmalignant groups are presented in Table 1. The total sample (N=249) ranged in age from 20 to 75 years, with a mean age of 50.38 years (S.D.=12.03). There were no statistically significant differences in demographic characteristics (age, education, and marital status) between the healthy and the benign groups. The nonmalignant sample, which combined the healthy and the benign groups together, included women who were, on average, 46.5
Discussion
The findings from our study suggest that incongruities exist between the illness representations of physically healthy women and those of patients diagnosed with breast cancer. Healthy women's perceptions of breast cancer are not an accurate representation of patients' experience. Physically healthy women seem to hold stronger beliefs concerning the role of environmental factors in causing breast cancer. Buick and Petrie [26] have also got similar results, reporting stronger beliefs of
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