Patient Education and Counseling, 12 (1988) 259- 265 Elsevier Scientific Publishers Ireland Ltd.
Original Article
Perceptions of Seriously Ill Patients: Does Diagnosis Make a Difference? B. Jo Hailey and Kimeron N. Hardin Department of Psychology, University of Southern Mississippi S.S. Box 9571, Hattiesburg, MS 594069371 N.S.A.) (Received May Sth, 1988) (Accepted July 23rd, 1988) One hundred fifty-five undergraduates taking an introductory class in psychology read descriptions of patients who were either male or female and had one of three serious illnesses: sexspecific cancer (breast or prostate), heart attack or lung cancer. Subjects then completed a questionnaire regarding their perceptions of and reactions to these descriptions. Two-way ANOVAs (sex by diagnostic category) on each of 13 questions revealed significant differences on 4 of the 13 questions for diagnostic category and 1 of the 4 questions also revealed a significant sex effect. Student-Newman-KeuIs comparisons revealed that patients with sex-specific cancer were seen as more difficult to talk to about their illness, less at fault for their illness, more likely to be embarrassed when an acquaintance finds out, and more likely to experience sexual adjustment problems. Males were also seen as more likely to experience sexual difficulties than females regardless of diagnosis. Implications of these findings for those who work with patients are discussed. Key words: perceptions; cancer.
Introduction It has long been realized that physical illnesses have psychological as well as physical effects. The recent emergence of specialized areas such as behavioral medicine and health psychology appear to reflect this growing emphasis on comprehensive approaches to treatment. Psychosociaiissues in recovery Recovery from a heart attack has received attention in recent years since stress has been associated with increased risk. Kaufmann et al. [l] identified emotional responses to heart attack such as anxiety, denial, giving up and adjustment disorders. Additionally, it was suggested that patients with coronary-prone (Type A) behaviors may experience lowered senses of self0738-3991/88/$03.50 0 1988 Elsevier Scientific Publishers Ireland Ltd. Published and Printed in Ireland
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esteem and control. A l-year follow-up study of 65 myocardial infarction patients (21 found factors affecting recovery included depression, irritability, loss of concentration and insomnia. Many patients also experienced changes in their relationships with their partners which led the authors to suggest more concentration on psychosocial intervention. Similar research on the psychosocial aspects of recovery for lung cancer patients has been conducted. An evaluation of the records of home-health agencies on 447 home-bound married cancer patients revealed that the families of older male patients with lung cancer felt more “overwhelmed” and depressed than the families of younger lung cancer victims, the families of cervical cancer victims, and the families of breast cancer victims [3]. Goldberg et al. [4] also found that a lung cancer patient’s physical status was related to their depressive symptoms but not in their spouses. Spouses’ symptoms were more related to involvement in the social environment. Much more information about the emotional recovery of females to breast cancer is known and many studies have documented the emotional upheaval following mastectomy. Dietz [5] advises that following a mastectomy, a patient develops a pattern of combined fearful, depressive and resentment reactions. Anstice [S] suggested that bereavement and depression follow a mastectomy and additionally, anxiety and fear can occur over the potential for developing cancer again. It has even been suggested that emotional trauma may be unavoidable for women undergoing mastectomy [7]. Women undergoing mastectomies have shown a negative change in body image [8] and greater feelings of loss of attractiveness and femininity [9] than women who underwent lumpectomy. Many variables may affect the adjustment of mastectomy patients post-operatively including the patient’s history of coping methods, pre-operative preparation, age, and the doctorpatient relationship. Several studies have also shown the importance of an adequate support system in adjustment [lO,ll]. Perceptions about the seriously ill
The importance of the perceptions of others in the recovery process of cancer patients has become the focus of several recent studies. In a study by MacDonald and Anderson [12], approximately half of 420 rectal cancer patients reported feeling stigmatized and these feelings were associated with emotional disorders, other medical problems, withdrawal from social activities, and disablement. Two studies have directly assessed the attitudes of others toward cancer patients. Sherman et al. [13] assessed college students’ feelings about and willingness to volunteer to help a dying cancer patient as compared to a patient with cancer in remission or a patient with a broken leg. Less positive feelings were associated with the dying cancer patient and additionally, the subjects perceived more positively the more attractive patients and the patients experiencing less physical pain. Margolies et al. [14] investigated the attitudes of medical students toward various patient groups. Subjects preferred greater professional distance from 260
cancer patients than from heart patients. These results suggest that the stigma felt by cancer patients may be reality-based and that it may be more difficult for some people to provide them with essential emotional and social support. Sexuality and support The care and support of seriously ill patients may be difficult regardless of the type of illness and its treatment. However, due to the special role of the breast in the areas of sexuality and nurturance, caregivers may be less comfortable providing support to patients with breast cancer and mastectomy. Previous research on perceptions of seriously ill females found more negative perceptions of and reactions to descriptions of patients with either breast or lung cancer compared to heart attack patients in such areas as how depressed the patient would be, how tense the person would be visiting the patient, and whether the patient would need counseling. In other areas, breast cancer patients were seen as having a higher chance of sexual adjustment problems and feeling more embarrassed around acquaintances than either of the other two illnesses [15]. Since the descriptions in the previous research were of females only, the purpose of the present research was to replicate the findings about the attitudes of young adults and to determine whether individuals perceive seriously ill females differently from seriously ill males. Method Undergraduate students W = 155) in an introductory psychology class read one of six descriptions of a seriously ill individual and were asked to try to imagine that the patient was an old family friend whom they were going to visit. All undergraduates were required to take this class; thus it is assumed that subjects represent a cross-section of majors at this university. Of the six descriptions, two involved a patient having had a heart attack (one female and one male) and two descriptions involved a patient having had lung cancer and a lung removed (one female and one male). The two remaining descriptions involved a form of sex-specific cancer, a woman with breast cancer and mastectomy and a man with prostate cancer and prostectomy. Prostate cancer was selected for the male description, since it related to sexual functioning and because it has a rate of incidence similar to that of breast cancer: 97,000 new cases are estimated for 1987 compared to 130,000 cases estimated for breast cancer [16]. Which description a particular subject read was determined solely by chance. Equal numbers of each patient description were prepared: they were shuffled and then distributed to subjects during regular class periods or at arranged times. Fifty-one subjects read the sex-specific cancer description (26 breast cancer, 25 prostate cancer); 52 read the heart attack description (26 female heart attack, 26 male heart attack) and 52 read the lung cancer description (25 female lung cancer, 27 male lung cancer). Subjects then answered a series of 13 questions about their perceptions of 261
the patient and their reactions to her or him. For each question, the subject chose one of five possible responses which were arranged in either ascending or descending order in terms of how negative the response was. For scoring purposes, the most negative response to each question was given a score of five and the most positive answer was given a score of one. For each question, higher scores indicated a more negative, pessimistic or less knowledgeable attitude toward or about the patient and her/his illness. Results were analyzed using two-by-three analyses of variance and Student-Newman-Keuls multiple comparisons tests. Results
Preliminary analyses were carried out to assure that the six subject groups were equivalent in terms of age and gender ratio. The mean subject age was
TABLE I MEANS AND STANDARD DEVIATIONS REACTIONS QUESTIONNAIRE ITEMS
How ill? How depressed? How hard to visit? How nervous? Chances of recovery? Difficult to talk? Likely to work? Psychological counseling? How much at fault? Tell the child? Sexual problems? Embarrassed? Knowledge of illness?
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(IN
PARENTHESES)
FOR
PERCEPTIONS/
Sex-specific cancer
Lung cancer
Male
Female
Male
Female
Male
Female
3.560 (0.821) 3.440 (1.044) 2.720
3.556 (0.801) 3.370 (0.792) 2.852
2.720
3.308 (0.736) 3.769 (0.908) 2.538 (1.104) 3.423 (0.987) 2.538 (1.140) 3.308 (1.258) 2.731 (1.041) 2.769
(1.292) 3.481 (0.893) 2.444 (0.698) 2.667 (1.109) 3.370 (1.043) 2.741
3.520 (1.005) 3.080 (1.222) 2.360 (1.319) 3.480 (0.872) 2.640 (1.036) 3.080 (1.256) 2.720 (0.891) 2.360
3.346 (0.936) 3.577 (0.902) 2.308 (0.928) 3.500 (0.648) 2.769 (1.177) 2.769 (0.951) 3.000 (1.131) 3.115
3.038 (0.916) 3.192 (1.096) 2.423 (1.065) 3.038 (1.216) 2.538 (0.948) 2.577 (1.102) 2.923 (1.093) 2.769
(0.792) 1.800 (0.913) 2.440 (1.044) 3.880 (0.781) 3.080 (0.954) 2.960 (0.611)
(0.908) 1.423 (0.703) 2.500 (1.068) 3.462 (0.905) 3.269 (0.724) 3.192 (0.801)
(0.712) 2.481 (0.849) 2.556 (0.892) 3.407 (0.844) 2.333 (0.877) 3.333 (0.679)
(0.700) 2.520 (1.005) 2.600
(0.952) 2.038 (0.871) 2.615 (0.941) 3.000 (0.632) 2.077 (0.744) 3.077 (0.891)
(0.951) 2.308 (1.192) 2.462 (1.067) 2.923 (0.796) 2.115 (0.766) 3.154 (0.732)
(1.275) 3.680 (1.030) 2.600 (0.866) 3.360 (1.075) 2.840 (1.143)
(0.957) 2.920 (0.759) 2.040 (0.841) 3.280 (0.792)
Heart attack
21.3 years. An analysis of variance (ANOVA) of the six groups revealed no significant differences among the groups for the age variable @(5,149) = 1.28, NS). Although the overall sample was predominantly female (total sample males = 52, females = 1031,when the proportion of males to females for each group was compared to the overall group makeup, Chi-square analyses revealed that each group proportion was equivalent to the overall group proportion. Table I presents the means and standard deviations of the 13 questions for diagnostic category and gender. Thirteen 2 (gender) by 3 (diagnostic category) analyses of variance (ANOVAs) were performed to evaluate whether there were overall differences for either gender or diagnostic category with responses to the following questions serving as the dependent measures in the ANOVAs: How ill would you expect the patient to look?; How depressed would you expect the patient to be?; How hard would it be for you to visit this person?; How nervous would you be during the visit?; What are the patient’s chances of recovery ?; How difficult would it be for you to talk to the person about the illness?; How likely would it be that the patient could go back to work in 3 months?; How likely would it be for the person to need psychological counseling?; How much at fault for their illness was the patient?; How much should the patient’s child be told about the illness?; How likely is it that the patient will have sexual adjustment difficulties assuming recovery?; How embarrassed would you expect the patient to be when someone finds out about the illness?; How much information do you feel you know about the patient’s illness relative to the average person? For three questions, a significant effect for diagnostic category emerged, but no effects for gender were found. These were “difficulty talking about the illness” (F(2,149) = 4.63, P < 0.051,“fault for the illness” (F(2,1491 = 12.00,P < 0.0011, and “likelihood of patient embarrassment” (F(2, 1491 = 27.24, P < 0.001). Student-Newman-Keuls (SNK) comparisons revealed that patients with sex-specific cancer were seen as more difficult to talk to about their illness, less at fault for their illness, and more likely to be embarrassed about their illness than patients who had experienced either heart attack or lung cancer. Significant main effects for diagnostic category P(2,149) = 10.90, P < 0.001) and gender (.F(1,149) = 6.61, P < 0.05) were observed for the question that asked about the likelihood of sexual difficulties for the patient. SNK comparisons revealed that patients with sex-specific cancer were seen as more likely than the other patients to experience sexual adjustment problems. In terms of gender, males in all three diagnostic categories were seen as more likely than females to experience sexual problems after their illness. No significant differences were found for any of the other questions for either diagnostic category or gender, and no significant interactions were observed for any of the 13 questions. Discussion
These results suggest differences among the reactions of others to different types of illnesses. In all instances where a significant effect for diagnostic
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category was found, patients with sex-specific cancer (breast cancer for females; prostate cancer for males) were perceived differently than patients with either lung cancer or heart attack, which were not different from one another. Subjects in the present study perceived patients with sex-specific cancer as compared to lung cancer or heart attack patients, as more difficult to talk to about their illness, more likely to be embarrassed when an acquaintance finds out about their illness, and more likely to experience sexual adjustment problems. Thus the sex-specific cancer patients were perceived more negatively than patients with either of the other diagnoses on these three questions. It is suggested that these more negative reactions occur toward sexspecific cancer patients because the types of cancer described in this category were associated with sexual activity (breast and prostate1 and many Americans tend to discourage the open expression of sexuality. In the other instance in which sex-specific cancer patients were perceived differently than patients with either of the other two diagnoses, those with sexspecific cancers were seen as less at fault for their illness. This finding is probably because there has not been a well-publicized campaign on preventive measures for either breast or prostate cancer whereas much national attention has been given to the smoking-lung cancer link and the relationship of improper diet and exercise to heart attack. Another possibility is that subjects felt greater sympathy toward the patients with sex-specific cancer because of their perceived losses in sexual functioning and therefore attributed less blame to them for the occurrence of the illness. It is possible that the breasts or prostate may be considered essential to sexual activity; therefore the loss of either of these body parts is perceived as contributing to sexual difficulties after recovery. An alternative explanation is that since more attention has been focused on heart disease and lung cancer, and the successful recovery from each, many people may perceive a heart attack or lung cancer as less threatening in terms of sexuality. An unexpected finding was that irrespective of diagnosis, seriously ill males were seen as more likely to experience sexual difficulties than seriously ill females. One explanation is that society may see male sexuality as more fragile (in terms of disruptability) than female sexuality since males may be perceived as being “sexually-non-functional” (when erection does not occur due to recovery distress), while females may be seen as “sexually-functional” no matter what her psychological state. An alternate explanation may be that males are seen as the initiators of sexual activity and with serious illness, no sexual involvement is initiated. A third possibility may be that females are perceived as having less of a need for sexual activity, thus causing little disruption in her normal activities. These results suggest that patients with different types of illness and gender elicit different types of reactions from others which may be useful to those who provide counseling or rehabilitative care. Specifically, counselors should be aware that a patient whose disease may be perceived by others as affecting his or her sexual behavior may have different problems than other patients. For example, these patients may not have the opportunity to discuss their illness with significant others because of these others’ reluctance to 264
participate in such a discussion. Thus, counselors should be alert for any signs of social isolation in these patients. Furthermore, the sexuality of seriously ill individuals appears to be another difficult area. It is suggested that counselors who work with these patients should be accurately informed of what can be realistically expected in terms of sexual performance and that they be prepared to communicate with patients about sexual matters. In other words, counselors must be educated about medical aspects of sexual behavior and they must also deal with any personal difficulties they may have in discussing sexual issues. Thus, both education and personal awareness may be necessary for effective counseling. Although this research concerns the perceptions of undergraduates, the case can be made that many of the issues discussed are relevant to the general population, of which counselors are a part. Therefore since no one is immune to personal bias and there are differing levels of professional training, these results can be useful in identifying existing or potential problem areas faced when counseling seriously ill individuals. Suggestions for future research include the exploration of how different degrees of relationship to the patient and other types of illness affect the reactions of others. Exploration of the perceptions of counselors and health care providers is also suggested. References 1
2 3
9 10 11 12 13 14 15 16
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