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Fear of contagion and AIDS: nurses' perception of risk a
b
c
d
R. M. Gallop , W. J. Lancee , G. Taerk , R. A. Coates & M. Fanning
e
a
Faculty of Nursing , University of Toronto and Department of Psychiatry, Toronto General Hospital , b
Department of Social and Community Psychiatry , Clarke Institute of Psychiatry and University of Toronto , c
Department of Psychiatry , Toronto General Hospital and University of Toronto , d
Department of Preventive Medicine and Biostatistics , University of Toronto , e
Department of Medicine , University of Toronto , Canada Published online: 25 Sep 2007.
To cite this article: R. M. Gallop , W. J. Lancee , G. Taerk , R. A. Coates & M. Fanning (1992) Fear of contagion and AIDS: nurses' perception of risk, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 4:1, 103-109, DOI: 10.1080/09540129208251624 To link to this article: http://dx.doi.org/10.1080/09540129208251624
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AIDS CARE, VOL. 4, NO. 1, 1992
103
Fear of contagion and AIDS: nurses’ perception of risk
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R. M. GALLOP, W. J. LANCEE’, G. TAERK~, R. A. COATES3 & M. FANNING4 Faculty of Nursing, University of Toronto and Department of Psychiatry, Toronto General Hospital, ’Departmentof Social and Community Psychiatry, Clarke Institute of Psychiatry and University of Toronto, 2Departmentof Psychiatry, Toronto General Hospital and University of Toronto, 3Departmentof Preventive Medicine and Biostatistics, University of Toronto and 4Department of Medicine, University of Toronto, Canada
Abstract Nurses’fear of contagzon when caring for persons with AIDS remains high despite increased levels of knowledge. This paper examines the multiple factors that contribute to nurses’ perception of risk within the workplace. The authors suggests that constructs fiom theories such as decision making, psychoanalysis and cognitive psychology can provide insight into the assessment of risk. Findingsfiom a recent survey of nurses are used to illustrate the complex nature of fear of contagion. Understanding this complexity may be an essential jrst step in order to provide opportunitiesfor resolution offears and modification of behaviors. Introduction In the vast majority of surveys of health professionals, the fear of contagion has emerged as the primary concern. This fear of contagion appears to be associated with avoidance of patients (Wallack, 1989) and belief in the right to refuse to care for PWAs (Pleck et al., 1988; Pringle et al., 1988; Sherer & Haughey, 1987). Several authors have posited explanations for the continued fear amongst health care professionals. These explanations have utilized theories from decision making, cognitive psychology and psychoanalysis. Alone, each theory is probably inadequate to explain fear of contagion, but together they may provide an explanatory model. These particular theoretical models address both intra individual (e.g. psychoanalytic theory) and extra individual or social perspectives (e.g. aggregated risk). The actual behaviours of an individual in a risk situation can be seen as a combination of the contributing factors shown in Table 1. This paper will examine these contributing factors and their influence in the determination of the assessment of risk and subsequent fear of contagion. Findings from a recent survey of knowledge, attitudes and concerns of hospital staff by the authors (Gallop et al., 1991b) and comments written by nurses in this survey will be used to illustrate the nature of
Address for correspondence: Dr Ruth Gallop, Faculty of Nursing, University of Toronto, 50 St. George Street, Toronto, Ontario M5S 1A1, Canada
104 R. M. GALLOP ETAL.
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Table 1. Factors and perspectives in evaluating risk for contagion Intra-personal perspective
Danger: AIDS
Extra-personal perspective (Social, health system)
Homophobia Loss of control Helplessness Assumed by self Past experience Decision strategies Compounded other risks
Fear of contagion
Rules, group expectations Threat of punishment Threat of censure Imposed by others Distributed events Aggregated risk
Personal value system Professional value system Possible response set
Catastrophic nature of danger Assessment of risk (use of heuristics and biases) (a) Actual vs perceived (b) Acceptable risk thresholds Role expectations Actual behaviour and consequences for care
Policies Rewards, sanctions Permissible response set
the expressed fear of contagion. Five hundred and sixty nurses participated in the survey. Details of the survey methods and findings are reported elsewhere (Gallop et al., 1991b). All attitude and concern questions were responded to on a four point scale of agreement. Theories in decision making suggest that a complex set of risk factors (e.g. known risk vs unknown risk, and the possibility of a catastrophic outcome) combine to determine how safe is safe enough (Fischoff et aZ., 1981). It will be suggested that for nurses caring for persons with AIDS within the constraints of the present health care system, two critical factors operate to amplify perceived risk: (1) homophobic concerns; and (2) intense feelings of helplessness and loss of control.
Background Blumenfield et al. (1987) reported that over 59 per cent of nurses surveyed believed that AIDS could be transmitted despite hospital precautions. Twenty-five to 50% had a fear of treating homosexual men. Fifty per cent stated they would ask for a transfer rather than work on an AIDS ward and 85% believed pregnant nurses should not have to care for AIDS patients. Sherer & Haughey (1987) found that many nurses were fearful of contracting AIDS and did not feel confident about meeting the intense needs of their patients. Fortysix per cent of the nurses in their sample felt that they had the right to refuse to care for PWAs. Pleck et aZ. (1988) report similar percentages in a survey of hospital staff, although the study uses a seven point scale of agreement and disagreement and no information is provided about degree of agreement in responses. Knox & Dow (1989) found that 28% of mental health professionals in community health centres believed they had the right to refuse to care for PWAs. A survey of visiting nurses in Ontario, Canada (Pringle et al., 1988) supported these findings. Fear of contagion and homophobia were once again demonstrated, although degree of fear was inversely correlated with knowledge and amount of previous experience in working with AIDS patients. Wallack (1989) reported that 53% of hospital staff surveyed admitted to sometimes avoiding performing procedures with AIDS patients.
FEAR OF CONTAGION AND AIDS
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Recent surveys of health care workers still find negative attitudes towards PWAs, much worry about caring for these individuals and fear of contagion in spite of a generally good knowledge base with regard to the disease (Smith et al., 1989; Garcia et al., 1989; Schlech et al., 1989; Imperato et al., 1988; Barrick, 1988; Sy et al., 1989; Gallop et al., 1991, 1992).
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The etiology of risk Attempts at explaining the aetiology of the fear of contagion have addressed both intra and extra individual factors. Gerbert et al. (1 988) stress extra individual factors citing three reasons for the persistence of fear: (1) distrust of authority (health care authorities have downplayed the real risk for health care professionals); (2) distrust of technology (prescribed precautions do not guarantee protection); and (3) distrust of information (communication between authorities and health care professionals is hindered by differences in values and goals). The first two reasons reflect extra individual factors while the third reason reflects the conflict between individual factors (e.g. each person’s assessment of her/his personal risk versus the aggregated risk (statistical risk calculated on a group basis) provided by hospital authorities to allay anxiety). Comments written by subjects in the survey conducted by the authors illustrate these explanations: Many felt scientific knowledge was insufficient. Comments reflecting the lack of faith in experts included: ‘We don’t know enough about AIDS and how it can spread. In five years it may be found that it can be spread by coughing etc. Caring for AIDS patients is difficult for fear of contracting the disease’. ‘We don’t know what being in contact with an AIDS person will show up in 20-30 years’. Some subjects felt that hospital administrators espoused staff safety without backing this espoused position with the necessary dollars to provide adequate equipment to protect staff. Psychoanalytic theorists explain the dynamics of the fear of AIDS as an externalized expression of an unconscious dynamic (Stevens & Muskin, 1987). PWAs represent ‘the embodiment of the loss of control, and both intravenous drug abusers and homosexuals are seen as individuals who engage in hidden pleasures’ (p. 542). This unconscious fear of our own loss of control creates barriers to rationality and inhibits expressions of compassion for the PWA, They conclude that while fear of contagion exists in health professionals, the intensity of this fear is primarily due to a displacement of homophobic attitudes. The linkage between homophobia and inadequate care has been reported in both clinical and empirical papers (Kelly et al., 1988; Pleck et al., 1988). Health professionals express fear that if infected by the HIV virus at work they would automatically be considered a member of a high risk group. In a sample of hospital staff (75.6% female), 43.5% agreed with the statement that ‘If I got AIDS, I would worry that other people would think I was a homosexual’ (Pleck et al., 1988).
Acceptable risk The theory of acceptable risk focusses on the decision making process of ‘how safe is safe enough’. The nature of acceptable risk is multidetermined (Fishoff et al., 1981). Decisions about acceptable risk involve the consideration of the options available and the consequences of each of these options. Consideration of options is often dependent upon the information provided and the subsequent processing of that information. Slovic, et al. (1977) suggest that in general, people are unable to deal with complex probabilistic problems. Instead they use simple heuristics or rules of thumb to reduce problems to manageable size. Kahneman & Tversky (1984) point out that certain probabilities may be distorted when decisions are
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made. Individuals may not accept low probabilities (Hershey & Baron, 1987). This may be due to the influence of cognitive processes such as salience, vividness and the availability heuristic (Nisbett & ROSS,1980). In other words, unlikely events are judged to occur more frequently than they actually do. This is particularly true if the event can be described as vivid or negative. Obviously any report of a health professional acquiring HIV infection by occupational exposure is perceived as both vivid and negative. The consideration of consequences determines the attractiveness of options and values ascribed to a risk. As suggested by Table 1, this is not a simple linear evaluation but can involve significant subjective evaluation. When a consequence is catastrophic as with AIDS, then even a very low risk may be considered unacceptable. For example, only 3% of nurses considered the risk of contracting AIDS high if recommended precautions were taken (16% moderate risk) but in the very next question, 15% were very concerned about the risk to their family by caring for PWAs (20% fairly concerned). Four questions later, 39% of nurses indicated they were very concerned that ‘we don’t know enough yet to know what precautions should be taken by health care workers’ (30% fairly concerned). When asked more specifically about anxiety providing care where bodily fluids are involved it became apparent that the fear of contagion was intense (23% very anxious, 32% fairly anxious). Another determinant of acceptable risk is whether options are considered for self, another individual or a group (intra or extra individual). Deber & Goel (1990) state: The probability of an adverse outcome from surgery may be 2%. T o the individual patient, however, the outcome is a dichotomous, all-or-nothing event. Probability values are useful guides to risk, but not to any particular outcome, especially if there is no chance of replay (p. 189). Roach et al. (1988) discuss the clinical decision making concerning the performing of prostatic cancer surgery in a patient with asymptomatic HIV infection. The surgery will provide the patient with the probability of an increased life expectancy of eight quality months vs the risk of 2 days life expectancy loss of the surgeon. However, the patient and the surgeon approach the decision from vastly differing individual frames and a simple comparison of risk factors is inadequate. The patient functions from a single case scenario with the prospect of a positive outcome. For the physician, specific case probabilities may be confounded not only by risk of multiple exposures consequently changing the odds but also the fact that the consequence, however small, may be catastrophic. It is unlikely that an individual considers herlhis options in terms of probability theory. For the nurse, who is usually a hospital employee, options may be experienced as limited and will be evaluated within a framework that differs from that of the hospital administrator who is more removed from the direct care situation. In the survey, 17% of nurses strongly agreed with the ‘right to refuse to care for PWAs’ (26% mildly agree) vs 6% of administrative staff (1 3% mildly agree). The risk associated with acquiring HIV infection via health care provision is very small. Risk for needle stick transmission is 1 per 250 needle sticks involving HZV infected material (Center for Disease Control, 1989). The calculation of overall risk for needle stick transmission, is a multiplication of three relatively small probabilities: ( 1) the probability of the needle stick injury; (2) the probability of the patient HIV positive; and (3) the risk associated with transmission from a person infected with HIV. Nurses do not calculate risk in this manner. Nurses in the survey were extremely concerned about the risk of needle stick transmission (5 1% very concerned, 30% fairly concerned), suggesting nurses viewed the risk as much higher than the statistical norm.
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Helplessness, loss of control and risk Confounding the fear of contagion and assessment of risk is a sense of helplessness and loss of control expressed by many staff. Nurses are socialized to professional ethics. These ethics include value of altruism and the putting aside of personal benefits in order to provide the best possible care to the patient. In most situations, a nurse has no choice as to whom s/he provides care. In recent years, performing an abortion or participating in this procedure has precipitated conflict between professional and personal values for some health professionals. Hospitals in America, in general, have accommodated this conflict by the introduction of a ‘conscience clause’ whereby staff can choose not to participate in these procedures. This could be argued as allowing personal values to supercede professional values and influence practice and policy. In Canada, most hospitals do not utilize ‘conscience clauses’. In both countries, nurses are expected to care for PWAs. Professional ethics and hospital administration policies demand care provision. In Canada, PWAs are usually young male individuals, very ill and in need of care. But the personal values (such as disapproval of certain sexual activities on moral or religious grounds) which may influence the wish to care for a PWA or exacerbate the fear of contagion are not sanctioned in our society or permitted expression within our hospitals. As indicated in the literature review, there is strong evidence that nurses and other health care workers avoid direct care activities for PWAs (Wallack, 1989; Knox & DOW,1989). In the survey, 10% of nurses strongly agreed that they would prefer to take care of a patient who contracted their infection by a blood transfusion rather than by homosexual activity (19% mildly agreed). Within the structure of the hospital, possible options for dealing with the risk involved are experienced as limited. Nurses in the survey expressed anger at their loss of rights, declaring themselves victims, describing feelings of powerlessness within a system where patients rights ‘take priority’ over staff rights. The right to refuse to care for a PWA even for a select group, such as pregnant staff, is not an option. Leaving employment is not a viable option for many health professionals, although to quote one nurse on the survey’ the day I care for an AIDS patient is the day I leave nursing’. Even if the right to refuse care to a PWA were permitted, testing for HIV infected persons does not occur routinely, false negatives can occur so that the avoidance of risk cannot be secured. According to Slovic et al. (1982) involuntary risk is evaluated as less acceptable than voluntary risks. This sentiment was apparent in the many comments concerning staff rights regarding the right to refuse to care for a PWA, mandatory testing and being at high risk: ‘I can’t believe that patients are allowed to refuse testing for the AIDS virus’, ‘it seems to me all the ‘rights’ are on the AIDS victims’ side. What about my rights, e.g. universal testing’, ‘. . . . I can’t refuse care but I should have the right to know when AIDS is suspected’. Fears were expressed in concerns about screening. Twenty-five per cent of nurses believed strongly that health care workers should be screened (27 mildly agreed) and many wrote comments indicating that they believed that their rights were trampled upon by not requiring patients to be tested. Yet 84% were aware of the possibility of false negatives in testing.
Conclusion It is apparent from the findings of this survey that fear of contagion remains a major concern despite relatively high knowledge levels and high levels of experience caring for PWAs. Familiarity with the illness and universal procedures for precautions does not seem to have been effective in reduction of fear of contagion. While this paper focusses on nurses, survey
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108 R. M. GALLOP ETAL. findings indicated that the concerns of the nurses were shared by many other health care professionals. There may be an interaction effect between fear of contagion and homophobia. Moreover, findings in this study support our contention that fear is closly related to risk, where risk involves complex psychological factors as well as probability theory. As we found in our subsequent intervention research, attempts to deal directly with fears can be complicated by implicit and at times explicit disapproval of any expression of a ‘negative’ or ‘homophobic’ attitude (Taerk et al., 1992). T o label fear of contagion as primarily displaced homophobia will only drive the fear underground and neither resolve the fear nor modify the behaviour. Given that hospital personnel are a microcosm of society then a multiplicity of views will be present. Opportunities to express views without subtle or overt censure is difficult in an environment that legislates attitude or fails to provide a forum for discussion. The following question must be addressed: It is possible to address and modify staff fears without judgement or disapproval of that fear? Recognizing the reality of a person’s fear regardless of the probability associated with that fear provides the concern with a legitimacy that promotes discussion. Ultimately this means that hospital administrators, decision makers, and educators must extend themselves beyond their own relatively arms length concerns and find ways of dealing with the fears and concerns that are very real and immediate to nurses and other hospital staff in direct contact with patients.
Acknowledgements This research was supported by a grant from Health and Welfare Canada. We also wish to acknowledge the thoughtful comments of Dr Hilary Llwellyn-Thomas in an earlier draft of the paper. References BARRICK,B. (1988) The willingness of nursing personnel to care for patients with acquired immune deficiency syndrome: a survey study and recommendations, Journal of Rofessional Nursing, 4, pp. 366-372. S. & WOWSER,G.P. (1987) Survey of attitudes of nurses BLUMENFIELD, M., SMITH,PJ., MILAZZO,J., SEROPIAN, working with AIDS patients, General Hospital Psychiatry, 9, pp. 58-63. CENTERFOR DISEASECONTROL(1989) Atlanta, Georgia. DEBER,R.A. & GOEL,V. (1990) Using explicit decision rules to manage issues of justice, risk, and ethics in decision analysis: When is it not rational to maximize expected utility? Medical Decision Making, 10, pp. 181-194. FISCHHOFF, B., LICHENSTEIN, S., SLOVIC,P., DERBY,S.L. & KEENEY,R.L. (1981) Acceptable Risk (Cambridge, Cambridge University Press). GALLOP,R.M., TAERK, G., LANCEE,W.J., COATES, R, FANNING,M. & KEATINGS, M. (1991) Nurses and AIDS, The Canadian Nurse, 87(1), pp. 29-31. GALLOP,R.M., TAERK, G., LANCEE,W.J., COATES,R, FANNING, M. & KEATINGS,M. (1991b) Knowledge, attitudes and concerns of hospital staff about AIDS, Canadian Journal of Public Health, 82, September/ October, pp. 1-4. GARCIA,M.L., IZAZOLA, J.A., VALDESPINO, J.L., ALANIS,L., CRAVIOTO, M.L., BASANEZ, R. & SEPULVEDA, J. (1989) Myths and stigmas about AIDS in health personnel in a Latin American country, 5th International Conference on AIDS, Montreal. GERBERT,B., MAGUIRE,B., BADNER,V., ALTMAN,D. & STONE, G. (1988) Why fear persists: health care professionals and AIDS, Journal of the American Medical Association, 260, pp. 3481-3483. HERSHEY, J. & BARON,J. (1987) Clinical reasoning and cognitive processes, Medical Decision Making, 7, pp. 203-21 1. IMPERATO, P.J.,FELDMAN, J.G., NAYERI,K. & DEHOVITZ,J.A. (1988) Medical students’ attitudes towards caring for patients with AIDS in a high incidence area, New York State Journal of Medicine, 88, pp. 223-227.
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KAHNEMAN,D. & TVERSKY, A. (1984) Choices, values and frames, American Psychologist, 39, pp. 341-350. KELLY,J.A., ST. LAWRENCE, J., HOOD,H., SMITH, S. & COOK, D. (1988) Nurses’ attitudes towards AIDS,Journal of Continuing Education in Nursing, 19, pp. 78-83. KNOX,M.D. & DOW, M.G. (1989) Staff discomfort in working with HIV spectrum patients. Abstracted in the 5th International Conference on AIDS: The Scientific and Social Challenge, Montreal. NISBETT, R. & Ross, L. (1980) Human Inference: Strategies and Shortcomings of Social Judgement (Englewood Cliffs, NJ, Prentice-Hall). PLECK,J.H., O’DONNELL,L., O’DONNELL,C. & SNAREY,J. (1988) AIDS-phobia, contact with AIDS, and AIDSrelated job stress in hospital workers, Journal of Homosexualiry, 15, pp. 41-55. PRINGLE,D.M., MOUSSEAU, J., MOHIDE,E.A. & CoAW, R.A. (1988) Visiting nurses’ knowledge, attitudes and concerns re caring for patients with AIDS, Ministry of Health, Ontario. Project No. 02040. ROACH,P., FLEMING,C., HAGEN,M. & PAUKER,S. (1988) Prostatic cancer in a patient with asymptomatic HIV infection: are some lives more equal than others? Medical Decision Making, 8, pp. 132-144. B.P. (1988) A study of nurses’ attitudes toward caring for patients with AIDS. Nurses’ SCHERER, Y.K. & HAUGHEY, experience in caring for patients with AIDS in Erie County, Journal of the New York State Nurses Association, 19(2), pp. 4-8. , FANNING, C. & LEFORT-JOST,S. (1989) Practices and attitudes of health care SCHLECH,W., ~ ~ A C W N A L D S., workers (HCW) towards HIV-infected patients in a large acute care hospital, 5th International Confmence on AIDS, Montreal. B. & LICHTENSTEIN, S. (1982) Response mode, framing, and information-processing effects SLOVIC,P., FISCHOFF, in risk assessment, in: R. HOGARTH(Ed.) New Directions for Methodology of Social and Behavioural Science: Question-Framing and Response Consistency, pp. 21-36 (San Francisco, Jossey-Bass). SMITH, M.U., GODEAU,R.E. & KATNER, H.P. (1989) Knowledge and attitudes of rural Georgia physicians concerning AIDS, 5th International Conference on AIDS, Montreal. STEVENS,L.A. & MUSKIN,P.R. (1987) Techniques for’reversing the failure of empathy towards AIDS patients, Journal of the American Academy of Psychoanalysis, 15, pp. 539-551. SY, F., BURRIS,J., GARRISON,C. & ADDY,C. (1989) AIDS & health care givers: knowledge, attitudes and infection control practices, 5th International Conference on AIDS, Montreal. TAERK, G., GALLOP,R., LANCEE,W.J., COATES,R. & FANNING,M. (1992) Recurrent themes of concern about AIDS as expressed in groups for hospital staff (submitted for publication). J.J. (1989) AIDS anxiety among health care professionals, Hospital &’ Community Psychiany, 40, pp. WALLACK, 507-510.
AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
Fear of contagion and AIDS: nurses' perception of risk a
b
c
d
R. M. Gallop , W. J. Lancee , G. Taerk , R. A. Coates & M. Fanning
e
a
Faculty of Nursing , University of Toronto and Department of Psychiatry, Toronto General Hospital , b
Department of Social and Community Psychiatry , Clarke Institute of Psychiatry and University of Toronto , c
Department of Psychiatry , Toronto General Hospital and University of Toronto , d
Department of Preventive Medicine and Biostatistics , University of Toronto , e
Department of Medicine , University of Toronto , Canada Published online: 25 Sep 2007.
To cite this article: R. M. Gallop , W. J. Lancee , G. Taerk , R. A. Coates & M. Fanning (1992) Fear of contagion and AIDS: nurses' perception of risk, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 4:1, 103-109, DOI: 10.1080/09540129208251624 To link to this article: http://dx.doi.org/10.1080/09540129208251624
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,
Downloaded by [University of Cambridge] at 04:13 07 December 2014
systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE, VOL. 4, NO. 1, 1992
103
Fear of contagion and AIDS: nurses’ perception of risk
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R. M. GALLOP, W. J. LANCEE’, G. TAERK~, R. A. COATES3 & M. FANNING4 Faculty of Nursing, University of Toronto and Department of Psychiatry, Toronto General Hospital, ’Departmentof Social and Community Psychiatry, Clarke Institute of Psychiatry and University of Toronto, 2Departmentof Psychiatry, Toronto General Hospital and University of Toronto, 3Departmentof Preventive Medicine and Biostatistics, University of Toronto and 4Department of Medicine, University of Toronto, Canada
Abstract Nurses’fear of contagzon when caring for persons with AIDS remains high despite increased levels of knowledge. This paper examines the multiple factors that contribute to nurses’ perception of risk within the workplace. The authors suggests that constructs fiom theories such as decision making, psychoanalysis and cognitive psychology can provide insight into the assessment of risk. Findingsfiom a recent survey of nurses are used to illustrate the complex nature of fear of contagion. Understanding this complexity may be an essential jrst step in order to provide opportunitiesfor resolution offears and modification of behaviors. Introduction In the vast majority of surveys of health professionals, the fear of contagion has emerged as the primary concern. This fear of contagion appears to be associated with avoidance of patients (Wallack, 1989) and belief in the right to refuse to care for PWAs (Pleck et al., 1988; Pringle et al., 1988; Sherer & Haughey, 1987). Several authors have posited explanations for the continued fear amongst health care professionals. These explanations have utilized theories from decision making, cognitive psychology and psychoanalysis. Alone, each theory is probably inadequate to explain fear of contagion, but together they may provide an explanatory model. These particular theoretical models address both intra individual (e.g. psychoanalytic theory) and extra individual or social perspectives (e.g. aggregated risk). The actual behaviours of an individual in a risk situation can be seen as a combination of the contributing factors shown in Table 1. This paper will examine these contributing factors and their influence in the determination of the assessment of risk and subsequent fear of contagion. Findings from a recent survey of knowledge, attitudes and concerns of hospital staff by the authors (Gallop et al., 1991b) and comments written by nurses in this survey will be used to illustrate the nature of
Address for correspondence: Dr Ruth Gallop, Faculty of Nursing, University of Toronto, 50 St. George Street, Toronto, Ontario M5S 1A1, Canada
104 R. M. GALLOP ETAL.
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Table 1. Factors and perspectives in evaluating risk for contagion Intra-personal perspective
Danger: AIDS
Extra-personal perspective (Social, health system)
Homophobia Loss of control Helplessness Assumed by self Past experience Decision strategies Compounded other risks
Fear of contagion
Rules, group expectations Threat of punishment Threat of censure Imposed by others Distributed events Aggregated risk
Personal value system Professional value system Possible response set
Catastrophic nature of danger Assessment of risk (use of heuristics and biases) (a) Actual vs perceived (b) Acceptable risk thresholds Role expectations Actual behaviour and consequences for care
Policies Rewards, sanctions Permissible response set
the expressed fear of contagion. Five hundred and sixty nurses participated in the survey. Details of the survey methods and findings are reported elsewhere (Gallop et al., 1991b). All attitude and concern questions were responded to on a four point scale of agreement. Theories in decision making suggest that a complex set of risk factors (e.g. known risk vs unknown risk, and the possibility of a catastrophic outcome) combine to determine how safe is safe enough (Fischoff et aZ., 1981). It will be suggested that for nurses caring for persons with AIDS within the constraints of the present health care system, two critical factors operate to amplify perceived risk: (1) homophobic concerns; and (2) intense feelings of helplessness and loss of control.
Background Blumenfield et al. (1987) reported that over 59 per cent of nurses surveyed believed that AIDS could be transmitted despite hospital precautions. Twenty-five to 50% had a fear of treating homosexual men. Fifty per cent stated they would ask for a transfer rather than work on an AIDS ward and 85% believed pregnant nurses should not have to care for AIDS patients. Sherer & Haughey (1987) found that many nurses were fearful of contracting AIDS and did not feel confident about meeting the intense needs of their patients. Fortysix per cent of the nurses in their sample felt that they had the right to refuse to care for PWAs. Pleck et aZ. (1988) report similar percentages in a survey of hospital staff, although the study uses a seven point scale of agreement and disagreement and no information is provided about degree of agreement in responses. Knox & Dow (1989) found that 28% of mental health professionals in community health centres believed they had the right to refuse to care for PWAs. A survey of visiting nurses in Ontario, Canada (Pringle et al., 1988) supported these findings. Fear of contagion and homophobia were once again demonstrated, although degree of fear was inversely correlated with knowledge and amount of previous experience in working with AIDS patients. Wallack (1989) reported that 53% of hospital staff surveyed admitted to sometimes avoiding performing procedures with AIDS patients.
FEAR OF CONTAGION AND AIDS
105
Recent surveys of health care workers still find negative attitudes towards PWAs, much worry about caring for these individuals and fear of contagion in spite of a generally good knowledge base with regard to the disease (Smith et al., 1989; Garcia et al., 1989; Schlech et al., 1989; Imperato et al., 1988; Barrick, 1988; Sy et al., 1989; Gallop et al., 1991, 1992).
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The etiology of risk Attempts at explaining the aetiology of the fear of contagion have addressed both intra and extra individual factors. Gerbert et al. (1 988) stress extra individual factors citing three reasons for the persistence of fear: (1) distrust of authority (health care authorities have downplayed the real risk for health care professionals); (2) distrust of technology (prescribed precautions do not guarantee protection); and (3) distrust of information (communication between authorities and health care professionals is hindered by differences in values and goals). The first two reasons reflect extra individual factors while the third reason reflects the conflict between individual factors (e.g. each person’s assessment of her/his personal risk versus the aggregated risk (statistical risk calculated on a group basis) provided by hospital authorities to allay anxiety). Comments written by subjects in the survey conducted by the authors illustrate these explanations: Many felt scientific knowledge was insufficient. Comments reflecting the lack of faith in experts included: ‘We don’t know enough about AIDS and how it can spread. In five years it may be found that it can be spread by coughing etc. Caring for AIDS patients is difficult for fear of contracting the disease’. ‘We don’t know what being in contact with an AIDS person will show up in 20-30 years’. Some subjects felt that hospital administrators espoused staff safety without backing this espoused position with the necessary dollars to provide adequate equipment to protect staff. Psychoanalytic theorists explain the dynamics of the fear of AIDS as an externalized expression of an unconscious dynamic (Stevens & Muskin, 1987). PWAs represent ‘the embodiment of the loss of control, and both intravenous drug abusers and homosexuals are seen as individuals who engage in hidden pleasures’ (p. 542). This unconscious fear of our own loss of control creates barriers to rationality and inhibits expressions of compassion for the PWA, They conclude that while fear of contagion exists in health professionals, the intensity of this fear is primarily due to a displacement of homophobic attitudes. The linkage between homophobia and inadequate care has been reported in both clinical and empirical papers (Kelly et al., 1988; Pleck et al., 1988). Health professionals express fear that if infected by the HIV virus at work they would automatically be considered a member of a high risk group. In a sample of hospital staff (75.6% female), 43.5% agreed with the statement that ‘If I got AIDS, I would worry that other people would think I was a homosexual’ (Pleck et al., 1988).
Acceptable risk The theory of acceptable risk focusses on the decision making process of ‘how safe is safe enough’. The nature of acceptable risk is multidetermined (Fishoff et al., 1981). Decisions about acceptable risk involve the consideration of the options available and the consequences of each of these options. Consideration of options is often dependent upon the information provided and the subsequent processing of that information. Slovic, et al. (1977) suggest that in general, people are unable to deal with complex probabilistic problems. Instead they use simple heuristics or rules of thumb to reduce problems to manageable size. Kahneman & Tversky (1984) point out that certain probabilities may be distorted when decisions are
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made. Individuals may not accept low probabilities (Hershey & Baron, 1987). This may be due to the influence of cognitive processes such as salience, vividness and the availability heuristic (Nisbett & ROSS,1980). In other words, unlikely events are judged to occur more frequently than they actually do. This is particularly true if the event can be described as vivid or negative. Obviously any report of a health professional acquiring HIV infection by occupational exposure is perceived as both vivid and negative. The consideration of consequences determines the attractiveness of options and values ascribed to a risk. As suggested by Table 1, this is not a simple linear evaluation but can involve significant subjective evaluation. When a consequence is catastrophic as with AIDS, then even a very low risk may be considered unacceptable. For example, only 3% of nurses considered the risk of contracting AIDS high if recommended precautions were taken (16% moderate risk) but in the very next question, 15% were very concerned about the risk to their family by caring for PWAs (20% fairly concerned). Four questions later, 39% of nurses indicated they were very concerned that ‘we don’t know enough yet to know what precautions should be taken by health care workers’ (30% fairly concerned). When asked more specifically about anxiety providing care where bodily fluids are involved it became apparent that the fear of contagion was intense (23% very anxious, 32% fairly anxious). Another determinant of acceptable risk is whether options are considered for self, another individual or a group (intra or extra individual). Deber & Goel (1990) state: The probability of an adverse outcome from surgery may be 2%. T o the individual patient, however, the outcome is a dichotomous, all-or-nothing event. Probability values are useful guides to risk, but not to any particular outcome, especially if there is no chance of replay (p. 189). Roach et al. (1988) discuss the clinical decision making concerning the performing of prostatic cancer surgery in a patient with asymptomatic HIV infection. The surgery will provide the patient with the probability of an increased life expectancy of eight quality months vs the risk of 2 days life expectancy loss of the surgeon. However, the patient and the surgeon approach the decision from vastly differing individual frames and a simple comparison of risk factors is inadequate. The patient functions from a single case scenario with the prospect of a positive outcome. For the physician, specific case probabilities may be confounded not only by risk of multiple exposures consequently changing the odds but also the fact that the consequence, however small, may be catastrophic. It is unlikely that an individual considers herlhis options in terms of probability theory. For the nurse, who is usually a hospital employee, options may be experienced as limited and will be evaluated within a framework that differs from that of the hospital administrator who is more removed from the direct care situation. In the survey, 17% of nurses strongly agreed with the ‘right to refuse to care for PWAs’ (26% mildly agree) vs 6% of administrative staff (1 3% mildly agree). The risk associated with acquiring HIV infection via health care provision is very small. Risk for needle stick transmission is 1 per 250 needle sticks involving HZV infected material (Center for Disease Control, 1989). The calculation of overall risk for needle stick transmission, is a multiplication of three relatively small probabilities: ( 1) the probability of the needle stick injury; (2) the probability of the patient HIV positive; and (3) the risk associated with transmission from a person infected with HIV. Nurses do not calculate risk in this manner. Nurses in the survey were extremely concerned about the risk of needle stick transmission (5 1% very concerned, 30% fairly concerned), suggesting nurses viewed the risk as much higher than the statistical norm.
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Helplessness, loss of control and risk Confounding the fear of contagion and assessment of risk is a sense of helplessness and loss of control expressed by many staff. Nurses are socialized to professional ethics. These ethics include value of altruism and the putting aside of personal benefits in order to provide the best possible care to the patient. In most situations, a nurse has no choice as to whom s/he provides care. In recent years, performing an abortion or participating in this procedure has precipitated conflict between professional and personal values for some health professionals. Hospitals in America, in general, have accommodated this conflict by the introduction of a ‘conscience clause’ whereby staff can choose not to participate in these procedures. This could be argued as allowing personal values to supercede professional values and influence practice and policy. In Canada, most hospitals do not utilize ‘conscience clauses’. In both countries, nurses are expected to care for PWAs. Professional ethics and hospital administration policies demand care provision. In Canada, PWAs are usually young male individuals, very ill and in need of care. But the personal values (such as disapproval of certain sexual activities on moral or religious grounds) which may influence the wish to care for a PWA or exacerbate the fear of contagion are not sanctioned in our society or permitted expression within our hospitals. As indicated in the literature review, there is strong evidence that nurses and other health care workers avoid direct care activities for PWAs (Wallack, 1989; Knox & DOW,1989). In the survey, 10% of nurses strongly agreed that they would prefer to take care of a patient who contracted their infection by a blood transfusion rather than by homosexual activity (19% mildly agreed). Within the structure of the hospital, possible options for dealing with the risk involved are experienced as limited. Nurses in the survey expressed anger at their loss of rights, declaring themselves victims, describing feelings of powerlessness within a system where patients rights ‘take priority’ over staff rights. The right to refuse to care for a PWA even for a select group, such as pregnant staff, is not an option. Leaving employment is not a viable option for many health professionals, although to quote one nurse on the survey’ the day I care for an AIDS patient is the day I leave nursing’. Even if the right to refuse care to a PWA were permitted, testing for HIV infected persons does not occur routinely, false negatives can occur so that the avoidance of risk cannot be secured. According to Slovic et al. (1982) involuntary risk is evaluated as less acceptable than voluntary risks. This sentiment was apparent in the many comments concerning staff rights regarding the right to refuse to care for a PWA, mandatory testing and being at high risk: ‘I can’t believe that patients are allowed to refuse testing for the AIDS virus’, ‘it seems to me all the ‘rights’ are on the AIDS victims’ side. What about my rights, e.g. universal testing’, ‘. . . . I can’t refuse care but I should have the right to know when AIDS is suspected’. Fears were expressed in concerns about screening. Twenty-five per cent of nurses believed strongly that health care workers should be screened (27 mildly agreed) and many wrote comments indicating that they believed that their rights were trampled upon by not requiring patients to be tested. Yet 84% were aware of the possibility of false negatives in testing.
Conclusion It is apparent from the findings of this survey that fear of contagion remains a major concern despite relatively high knowledge levels and high levels of experience caring for PWAs. Familiarity with the illness and universal procedures for precautions does not seem to have been effective in reduction of fear of contagion. While this paper focusses on nurses, survey
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108 R. M. GALLOP ETAL. findings indicated that the concerns of the nurses were shared by many other health care professionals. There may be an interaction effect between fear of contagion and homophobia. Moreover, findings in this study support our contention that fear is closly related to risk, where risk involves complex psychological factors as well as probability theory. As we found in our subsequent intervention research, attempts to deal directly with fears can be complicated by implicit and at times explicit disapproval of any expression of a ‘negative’ or ‘homophobic’ attitude (Taerk et al., 1992). T o label fear of contagion as primarily displaced homophobia will only drive the fear underground and neither resolve the fear nor modify the behaviour. Given that hospital personnel are a microcosm of society then a multiplicity of views will be present. Opportunities to express views without subtle or overt censure is difficult in an environment that legislates attitude or fails to provide a forum for discussion. The following question must be addressed: It is possible to address and modify staff fears without judgement or disapproval of that fear? Recognizing the reality of a person’s fear regardless of the probability associated with that fear provides the concern with a legitimacy that promotes discussion. Ultimately this means that hospital administrators, decision makers, and educators must extend themselves beyond their own relatively arms length concerns and find ways of dealing with the fears and concerns that are very real and immediate to nurses and other hospital staff in direct contact with patients.
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