Health beliefs and coping with a chronic illness
Ajit K Dalal
(In G. Misra (ed.), Psychological Perspectives in Stress and Health. New Delhi: Concept)
The prevalence of chronic diseases has increased rapidly in last two-three decades. Increase in life expectancy, life style, dietary habits, occupational and environmental stresses along with a host of other factors have led to a four-fold increase in the occurrence of chronic diseases in this Century. The WHO Report (1998) shows that whereas the deaths due to acute and infectious diseases had come down from 36% in 1900 to 6% in 1980 deaths due to chronic diseases has gone up from 20% to 70% in the same period. In fact, if one is above 50 years of age, the chances are more than 80 that he or she would be suffering from some chronic disease. Chronic diseases, particularly those like cancer and heart attack are now central to the modern consciousness of what illness mean.
By definition, chronic diseases are long lasting diseases, often lasting for the lifetime. The symptoms may not be present all the time, but the prospects of recurrence of the symptoms means that recovery prospects are limited. In most of the cases the therapeutic intervention is limited to symptomatic treatment, not complete cure the disease. Because of the long-drawn nature of the disease, people are required to integrate it in their lives. These diseases become part of their existence. The meaning these diseases acquire in one's life largely depend on - age, nature of occupations, achievements and responsibilities and social support one has. Severity, future course of the disease, its speed and directions are some other considerations. The afflicted person is required to comprehend the significance of the chronic diseases in terms of the nature of adjustments that are to be made to live with a disease in the world of healthy. Obviously, the person suffering from a chronic condition is required to take up major responsibility of managing his/her own disease. They are required to identify the symptoms, monitor progress of the disease and control its debilitating side effects. It becomes the responsibility of the people suffering and their families to manage medical, occupational, social and psychological after-effects and to restore one's sense of self-worth and meaning in life. They are not only required to live with the illness but also have to continue participating in every day life; not as a patient but as a social-being.
Cultural beliefs influence the whole gamut of health related behaviour, however, this article is primarily confined to discussing how these beliefs help people in appraisal and social construction of the experience of their illness, particularly in long term. These cultural beliefs may not play a predominant role in cases of acute and life threatening diseases where the immediate concern is to save a life, as in the case of heart attack. However, in the case of a long-term disease or disability the concern shifts to bringing about changes in one’s life to adjust to the demands of the new situation. When do family, friends and social network play an important role in shaping a patient's perception of the disease and what are their implications for his or her life?
Not only there are wide cultural differences in the metaphysical beliefs which people have about the world and their own disease, these beliefs affect, in a complex way, the health status of people. Levin and Vanderpool (1991) reviewed a long list of about 300 articles published in this field from epidemiological, gerontological and behavioral sciences supporting a linkage of religious beliefs and practices with physical health outcomes. These studies have shown both, deleterious and salubrious effects of religion on health status. Most of these studies were of descriptive nature and no clear patterns of results were obtained. A process-oriented approach may probably be more appropriate in this field to make sense of the empirical relationships between religion and health (Dull & Skokan, 1995). The spiritual experience being multidimensional and context specific, the issue of relationship between religion and health has to be addressed within the larger domain of spiritualism and its relevance for the individual (Kier & Devenport, 2004).
In the traditional Indian society metaphysical beliefs, i.e., beliefs in Karma, God, spirits, are presumed to be important determinants of many happenings in one's life, including illness and suffering. The theory of Karma is invoked as an explanation for an array of undesirable life events. This theory holds that good and bad deeds accumulate over all previous lives and if people have done some wrong in this or previous births, then they have to suffer the consequences. The present suffering is frequently attributed to one's own misdeeds of this and previous lives. Another metaphysical belief: God's will is also frequently cited as an explanation for many happenings in life. As different from the principle of Karma, God is seen as an external agent who controls reward and punishment, not always according to what ones deserves (Paranjpe, 1984). A person's bad deeds may be condoned by a benevolent God. The belief in fate implies that all life events are predestined and one can do little to alter them. Though conceptually different, these metaphysical beliefs are quite often used interchangeably in everyday parlance.
What is belief?
Before proceeding further let us be clear about what does belief mean. Belief in the psychological sense, is a representational mental state that takes the form of a propositional attitude. In the religious sense, "belief" refers to a part of a wider spiritual or moral foundation, generally called faith. Belief is considered propositional in that it is an assertion, claim or expectation about reality that is presumed to be either true or false (Hosen, Hosen and Stern, 2002).
The idea that a belief is a mental state is much more contentious. While some philosophers have argued that beliefs are represented in the mind as sentence-like constructs others have gone as far as arguing that there is no consistent or coherent mental representation that underlies our common use of the belief concept and is therefore obsolete and should be rejected. This has important implications for understanding the neuropsychology and neuroscience of belief. If the concept of belief is incoherent or ultimately indefensible then any attempt to find the underlying neural processes which support it will fail. If the concept of belief does turn out to be useful then this goal should (in principle) be achievable.
Why do beliefs affect health status?
Beliefs mostly act on bodies in ways that an outside observer cannot measure. The human mind converts beliefs and expectations into biochemical realities. The mechanisms which link beliefs to the bodily processes are still not very clear. Most of the evidences are anecdotal suggesting that work, but no direct linkages are yet established. Perhaps the most compelling evidence is provided by the placebo studies. It is observed in a large number of studies that anticipation of physical effects as outcomes of medication placebos bring about actual physical changes. In one study (Feilding, Fagg, Jones, Ellis, Hockey, Minawa, Craven, Mason, Timothy, Waterhouse, & Wrigley, 1983) conducted in London on patients (n=411) were told that they should expect hair loss from the treatment of chemotherapy. Thirty per cent patients were placebos instead of chemotherapy who suffered hair loss to the same extent as other. As argued by Radley (1994) where doctor and patients subscribe strongly, where their separate roles are clearly defined, there placebos will have more therapeutic powers.
Expectations work in different/varied ways. One related phenomenon ‘anniversary effect’ signifies that people are more likely to die around important dates in their lives. Philip, Van Voorhees and Ruth (1992) surveyed the records of over 2 million people. It revealed that women are more likely to die within a week after their birthday; men peak just before their birthday. The interpretation was that women are more likely to believe that birthday are a time of celebration and meeting friends and relatives, whereas for men it is a time for taking stock of their accomplishments which they dread.
Bower, Kemeny, Taylor and Fahey (1998) have discussed some of the important functions which beliefs serve for people. First, they provide explanations as to why they fell sick. It is important to have an explanation to make the life events predictable, no matter how aversive the life conditions are. It helps people in having mental preparations to face the hard truth. Second, beliefs about the causes of illness help people in deciding about the kind of treatment to be sought. People postpone decisions regarding the alternative medicine to be sought till they are sure about the causality. Third, beliefs play an important role in building hopes and expectations which trigger the healing mechanism of the body. People who expect to die or the operation table often fail the surgery. Beliefs help people in reintegrating within the culture they come from. Cultural beliefs help people find meaning in their suffering.
Most philosophers hold the view that belief formation is to some extent spontaneous and involuntary. Some people think that one can choose to investigate and research a matter but that one cannot choose to believe. On the other hand, most people have the impression that in some cases people don't believe things because they don't want to believe, especially about a matter in which they are emotionally involved.
Delusions are defined as beliefs in psychiatric diagnostic criteria (for example in the DSM). Psychiatrist and historian Berrios (see Wikipedia, 2005) has challenged the view that delusions are genuine beliefs and instead labels them as "empty speech acts", where affected persons are motivated to express false or bizarre belief statements due to an underlying psychological disturbance. However, the majority of mental health professionals and researchers treat delusions as if they were genuine beliefs, adversely affecting health of the patients.
However, this position is contested in recent times with convincing research evidences that many such beliefs play a positive role in the recovery process and in adjusting to adverse life conditions. Many psychologists (Lazarus,1986; Taylor, 1989) referred to such beliefs as ‘healthy illusions’-the beliefs that make life livable. Such beliefs (like, I am a good person) are essential to lead a healthy life. After reviewing the social psychological literature, Taylor and Brown (1988) concluded: “The overriding implication that we draw from our analysis … is that certain biases in perception that have previously been thought of as amusing peccadillos at best and serious flaws in information processing at worst may actually be highly adaptive under many circumstances” (p. 205). Three “pervasive, enduring, and systematic” (p. 194) illusions about the self— unrealistically positive self-evaluations, exaggerated perceptions of control or mastery, and unrealistic optimism —were said to be the key elements that help bring about and maintain psychological well-being despite the inaccuracy of these self-evaluations.
This set of positively biased illusions is associated with and fosters better life functioning as well as positive psychological adjustment. This is counter not only to traditional theories of mental health, but also to intuitive beliefs about adjustment. Even if one accepts the idea that overly optimistic beliefs foster psychological adjustment, it is compelling to believe that this would be a false happiness, that those living in a dream world would be unable to function as effectively in the long run as would more realistic persons. The reality is just the reverse (Taylor, Collins, Skokan, & Aspinwall, 1989, pp. 115–116).
Managing one’s own chronic disease
How people live with chronic diseases is one of the most fascinating and challenging area of research in psychology. The research in this area has been growing in recent years, though there is still little consistency in the findings that have emerged. There are many reasons for this lack of consistency in the research findings. One, a bulk of research is from the medical perspective, where the emphasis is on the disease, not on the person. The effort is to understand the nature of the disease, to arrive at an accurate diagnosis, and to plan out the treatment procedure. Patients’ own perspective, and their own perception and feelings are not much investigated. Second, patients' own role in managing the disease is still the least explored. Like the attending doctor, the patient is also actively involved in understanding the disease and trying out various remedial measures. Patients own beliefs about the illness play an important role in this venture. It is suggested in many studies that patients' own beliefs about their health and treatment regulate their health behavior to a far greater extent than the doctors' beliefs or objective medical data (Roberts, Smith, Bennett, Cape,Norton & Kilburn, 1984). However, There are few longitudinal studies examining these aspects. Third, the role of cultural factors is relatively ignored in psychological researches in this area (Dalal & Ray, 2005). Though there is substantial anthropological and sociological work to highlight cultural differences in health practices and treatment modalities, psychologists have yet to provide an understanding of how these cultural beliefs gets translated into concrete actions. Psychological researches may fall in to some pattern if cultural beliefs and their psychological imports are more systematically investigated.
To put it briefly, research focusing on health beliefs shares some common understanding about the human nature. First, people are generally actively involved in understanding the meaning of their illness. This understanding is essential to appropriately react to the health crisis. Secondly, people differ widely in the way they subjectively construct the experience of even very similar illnesses. Their beliefs about the illness and life in general provide the basic inputs for these subjective constructions. Thirdly, these subjective constructions of the illness in terms of their meaning, causes &, control influence their recovery (or adjustment) very significantly, at times more significantly than the real nature of the disease. Fourthly, people are motivated to make efforts to recover from the crisis situation. In fact, it is assumed that the efforts to recover begin with the onset of the chronic disease itself. Fifth, people are not only motivated but also possess a self-curing mechanism. In the crisis situation, this mechanism gets activated and people on very rare occasions need institutional support to deal with the psychological crisis. People not only recover or successfully adjust but also learn to be more resourceful in facing a similar crisis in future. Sixth, people can be helped and trained to cope with the adversities by bringing appropriate changes in their own beliefs and attitudes.
A review of five studies
The five studies reported here were conducted at different time points by colleagues and this researcher at Allahabad. One of the major objectives of all these studies was to examine the beliefs the patients had about their own illness, particularly beliefs related to causes of the disease, factors contributing to recovery and beliefs about personal control. The linkages of these beliefs with affective reactions, psychological and medical recovery were also examined. The interest was in understanding the process through which these health beliefs influence recovery outcomes for the patients who were going through the acute phase of their chronic disease necessitating hospitalization. In all these studies the disease and recovery was studied from the patients' perspective.
In the first of these studies (Dalal & Pande, 1988) orthopaedic patients who were the victims of some major accident. These orthopaedic patients were classified as permanently disabled (eg., amputees), or temporarily disabled due to the accident. They were interviewed two weeks and a month after the accident to map their beliefs and recovery. The second study was conducted by Dalal and Singh (1992) on tuberculosis patients convalescing in a local hospital. The patients were asked questions about perceived causes of the diseases and beliefs about recovery. Their psychological and medical recovery was examined. The third study was carried out (Agrawal & Dalal, 1993) to investigate the recovery process of myocardial infarction patients. Their recovery was monitored at three time points, during hospitalization and later at home. Again the relation between their disease related beliefs and recovery process was the main objective of the study. The fourth study (Kohli & Dalal, 1998) was conducted on cervical cancer patients to study their explanatory models and psychological recovery. Women at different stages of treatment for cervical cancer were interviewed for their metaphysical beliefs about the disease. In the last study reported here (Dalal & Agrawal, 1999) studied the perception of hospital environment and its relation with affective reactions of patients getting treatment for different chronic diseases. Dalal (2000) has discussed major findings of these studies.
The major findings of these five studies are collated to find the overall pattern of the relationship between health beliefs and recovery from the disease. Since different questionnaires and measures were used in these studies, for the purpose of comparison the findings were in some instances further subjected to some transformation. Again, not all measures were included in these five studies and the comparisons were made wherever it was possible.
Causal and recovery beliefs: The mean ratings of causal and recovery attributions were rank ordered to compare findings across the first four studies conducted on different groups of patients. The highest mean rating was given the rank of 1 and so on. These ranks are presented in Table 1.
Table 1. Rank order of causal and recovery beliefs as reported by the patients.
The trends of ranks in Table 1 show that health problems were most frequently attributed to God's will and Karma, except in the case of CHD patients. Other's carelessness was least used category of causes, except by the accident victims. CHD patients attributed the blame more to themselves than to any other factor.
The pattern was not that clear in the case of recovery attributions. Here, recovery was most frequently attributed to the attending doctor, may be because all the patients were in the hospital. After doctor, the recovery was most frequently attributed to god. The other attributions of recovery seem to be more contingent on the nature of illness.
Causal dimensions and treatment decisions: The actual ratings of causal attributions as reported in Table 1 in the case of cancer patients were categorized along three causal dimensions and were correlated with delay in seeking treatment and perception of hospital environment. The three causal dimensions are internal (own carelessness), external (other's carelessness, family conditions), cosmic (Fate, God's will and Karma). These correlations are reported in Table 2.
Table 2: Correlations + of causal dimensions with delay in seeking treatment and perception of hospital environment.
|Causal dimensions||Treatment delay++||Hospital envir. |
+Perceived severity of the disease was partialled out.
++Correlations derived on cancer patients only.
The results show that in case of cancer patients there was greater delay in seeking treatment when patients attributed their illness to internal and cosmic factors. It was also found that the hospital environment was perceived as less threatening when the disease was attributed to internal factors, and more threatening when attribution was made to cosmic factors.
Linkages of health beliefs with recovery measures: The two types of beliefs (causal and recovery), as taken in some of these studies were correlated with the measures of psychological adjustment. The indices of psychological recovery varied in these studies, but common among all the four studies were the items related to: disease appraisal, hope, mood state and positive attitude. The simple correlations between beliefs and psychological adjustment are given in Table 3.
Table 3: Correlations of health beliefs with recovery measures.
*p<.10 **p<.05 ***p<.01
*TEMPerary and PERManent disability
The results show that in general the correlations between causal attributions and psychological adjustment was found to be low and showed no consistent trend across different samples. Only in the case of CHD patients self-blame positively correlated with adjustment. Attribution to family conditions positively correlated with adjustment in case of TB patients and negatively in case of cancer patients. Cosmic beliefs also did not show any consistent pattern.
On the other hand, for CHD patients attribution to self, God and Karma positively correlated with adjustment. The pattern of correlation was reverse in case of TB patients. Separate measures of control over self and disease, in general showed significant correlations with psychological adjustment of the patients.
Proposed cultural belief model of health
The above discussion and findings of the five studies, as reported above facilitates the formulation of a cultural belief model of health.
The formulation of this model is based on the following premises:
- People are motivated to find the causes of their illness. The search for the causality is not in terms of medical causes but in terms of larger life perspective. The functional view of causality suggests that people search for those explanations which help them in making adjustments in their lives to deal with the aftermaths of a chronic disease. Such causal explanations are of value in integrating the illness experience in their larger world view
- People often resort to prevailing cultural beliefs as a wider framework to make sense of their illness. These are the beliefs which are readily accessible and are acceptable to the family and community to which the sick person belongs. In fact, making sense of a illness is an collective process in which family and support group of the patient are actively engaged. These explanations involve mundane and metaphysical beliefs; social and personal causality; traditional and biological causality consistent with the cultural belief system. A disease is thus understood and interpreted within the existential domain of a socio-cultural system.
- The main objective of viewing a chronic disease from such a broad socio-cultural perspective is to relocate one’s place in the social matrix they belong to. A chronic disease dislocates a person and disrupts his/her old pattern of social interaction. The changed circumstances often call for redefining one’s social relationships and relocating oneself in the social network For example, a person after a major heart attack may no longer be an earning member of the family and may be very much dependent on others for daily routine. This is likely to affect his/her status in the family
The cultural health belief model proposes that the way people make sense of their disease significantly influence their health-related behaviour. Specifically two types of health belifs are of significance. These are: causal beliefs and recovery beliefs. Causal beliefs are those which explains why a particular disease has occurred; whereas, recovery beliefs relate to the factors which are considered as contributing to the recovery process. The three types of causal beliefs are: internal (attributing to self), external (attribution to outside factors) and metaphysical (attributing to cosmic, religious factors). The recovery beliefs are also categorized in these three types. In general, it is contended on the basis of the earlier studies that causal attribution are closely linked with decisions about the treatment mode and delay in seeking medical treatment. The recovery beliefs would relate with the emotional state of the patient’s mood state and compliance with the course of treatment.
Of course, there are no direct linkages between cultural beliefs and recovery from the disease. This relationship is mediated by a number of background variables and illness conditions. This is an emerging area of research with many exciting possibilities. The work to identify mediating variables, and accordingly expand the cultural belief model of health is still in progress.
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