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AIDS in people with haemophilia and implications for behavioural change
Sot. cr. .Mt?i. Vol. 31. No. 1. pp. 73-79. 1990 Printed in Great Britain. All rights reserved
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0277-9536 90 53.00 + 0.00 1990 Pergamon Press plc
SELF- AND OTHER-AWARENESS OF THE RISK OF HIV/AIDS IN PEOPLE WITH HAEMOPHILIA AND IMPLICATIONS FOR BEHAVIOURAL CHANGE I. MARKOVA,’ P. A. WILKIE,’ S. A. NAJI’ and C. D. FORBES’ ‘Department of Psychology, University of Stirling, Stirling FK9 4LA, ‘Health Service Research Unit, University of Aberdeen, Drew Kay Wing, Polwarth Building, Foresthill, Aberdeen AB9 2ZD and 3Department of Medicine, Ninewells Hospital and Medical School, Dundee DDI 9SY, Scotland Abstract-Many people with haemophilia have been infected by HIV through the contamination
of blood products they need for treatment of their bleeding. This study explored the perceptions of people with
haemophilia of their own and others’ risk of HIV/AIDS and their beliefs about others’ perceptions of HIV/AIDS. The results have shown that many patients are not willing to disclose the existence of their haemophilia to certain categories of people and have a firm view of who should and should not know about their HIV antibody status. The patients’ beliefs of others’ perceptions of HIV and AIDS are associated with (a) their perceptions of risk for themselves and others and (b) with behavioural change to prevent the spread of HIV. Key words-haemophilia, perceptions
HIV/AIDS, self- and other-awareness,
INTRODUCTION
perception of risk, beliefs about others’
the possible implications of such perceptions for behavioural change preventing the spread of HIV infection. Living with haemophilia, a genetic disorder of blood clotting that affects only men, imposes a constant degree of uncertainty as to how best to organise one’s life due to the hour by hour unpredictability of the condition. The person may be well at one moment yet at the next can have a bleed, the seriousness of which can range from minor to lifethreatening. Although he may not show any visible symptoms or signs of illness, he may suffer excruciating pain. Previous research [14] has indicated that public ignorance and the stigmatising effects of haemophilia create a considerable variety of problems for patients and their families. We have found that about one third of people with haemophilia do not tell their employers that they suffer from the condition even if concealment of haemophilia may have adverse effects for their health [15]. The main argument for not telling employers about their haemophilia is the patients’ belief that employers are ignorant about the disease and its manifestation, thinking, for example, that the patient can bieed to death from a pin prick. Shelley (161, himself having haemophilia, writes in his autobiography how as a young man he wished to be accepted by society as a person in his own right and not given sympathy or special consideration as an ‘untouchable’, and he describes several strategies he adopted to cope with ‘others’ when they inquired about his health. In 1982 HIV was identified in factor concentrates used for the treatment of haemophilia. Unfortunately a great number of people with haemophilia worldwide were already infected by HIV because of the use of contaminated concentrates. These people. therefore, must live with two problems. First, the severe
Psychological theories concerned with health-oriented behavioural changes often assume that such changes result from the individual’s knowledge of the disease and his or her ability to process the relevant information and evaluate the risk to him- or herself. In other words, it is the cognitive faculties of the individual that are the focus of the researcher’s attention [l, 21. Therefore, the provision of information about a disease, and the facilitation of comprehension, understanding and memory, are considered to be the essential prerequisite of any health-oriented behavioural change [3]. It follows, moreover, that if the individual does not behave according to this model, it is because of his or her individual characteristics, be it irresponsibility, denial of the problem, misperception of the risk, or misunderstanding of statistical probability [4]. Such psychological theories and health education programmes rarely consider that illness is not just an impairment of the individual’s body or mind but also a social construct with negative connotations [5-g]. Illness and disease have been variously construed as the ‘night-side of life’ [IO], ‘punishment’ [I, ‘deviance’ [I I], ‘social death’, ‘destruction’ [12], ‘social stigma’ [13], to give but a few examples. Since these constructions are part of our social life, people with illness or disability often develop strategies enabling them to eliminate or at least to reduce the effect of such social constructions on themselves. These strategies, however, may work against behavioural changes designed to prevent the spread of the disease. The present study explored the perceptions of people with haemophilia of their own and of others’ risk of HIV/AIDS, and their beliefs about others’ perceptions of HIV/AIDS. In addition, it focused on 73
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I. MARKOVAet al.
form of haemophilia is itself life-threatening for patients. They must cope with unpredictable bleedings and the possibility of contracting hepatitis from their treatment; they suffer acute and severe pain and their life is restricted in a large number of ways [17]. Second, many of them must live with the fear that their HIV infection may lead to full-blown AIDS. Moreover, HIV infection and AIDS present an additional stigmatising problem for people with haemophilia: AIDS is a sexually transmitted disease that, at the time of this investigation, the mass media associated largely with promiscuity and homosexuality. Of those affected by HIV infection, people with haemophilia form only 1%. METHOD
This study was part of a longitudinal research nroiect carried out in the West of Scotland into iesponses of people with haemophilia to the risk of HIV infection and of AIDS. Two semi-structured interviews and a questionnaire were developed and piloted with 10 patients who had haemophilia and were registered at the Glasgow Royal Infirmary. The first interview included the following issues: to whom the individual disclosed information about his haemophilia before the AIDS epidemic; whether the individual discloses information about his haemophilia now; and who should and should not know about the individual’s HIV antibody status. The second interview was concerned with the individual’s perception of risk to himself and others, and with his behavioural changes to protect himself and others from HIV infection. The questionnaire was concerned with the patients’ and of others’ perceptions of the seriousness of HIV infection in comparison with other kinds of disease. Participants
and procedure
Participants of the study were patients with haemophilia who attended the Haemophilia Reference Centre at Glasgow Royal Infirmary, which serves patients from the whole of the West of Scotland including the Isles. The project started in 1986, by which time blood products were being heat treated to destroy any HIV that might have slipped through the screening process during blood collection. At that time, many patients with severe haemophilia were already known to be HIV antibody positive but the general belief amongst the professionals was that only a small proportion of those infected would go on to develop full-blown AIDS. Socio-demographic and medical characteristics of the patients are given in Table 1. Haemophilia is usually classified as mild, moderate or severe according to the concentration of the clotting factor present in blood plasma and also according to how easily the patient bleeds. Clinically, the concentration of the clotting factor correlates with the amount and severity of the bleedings the patient might suffer. While mildly affected patients usually need infusion of concentrate when undergoing surgical operations, severely affected patients often bleed spontaneously or after emotional trauma. In the present study only 11 moderately affected patients were available and since their medical characteristics, including HIV
Table I. So&-demographic and medical characteristics of the participants Severity of hacmophilia Characteristic
Mild/moderate hacm.
Severe hacm.
Number Range Age Mean
31 17-n years 36.2 years
28 17-70 years 34.8 years
Marital status: Single Married Employment: ;Iyial class I + II w+v Unemployed Retired Student HIV antibody status: Positive Negative
II 20
13 I5
7 8 3 9 2 2
5 4 I 14
I
I2 16
30
I 3
antibody status, were more like those of the mildly than the severely affected patients, for the purpose of analysis we combined the moderately and mildly affected patients into one group. Of the 59 in the present sample, 31 were classified as mildly/ moderately affected and 28 were severely affected by haemophilia. Of the 28 severely affected, 12 patients were HIV antibody positive. Only 1 patient from those mildly/moderately affected was infected by HIV. Patients were interviewed by the counsellor involved in the study when they came to hospital for a review of their clinical condition. The first interview lasted about an hour. It was tape-recorded with the prior permission of the patients and the data were then transcribed onto specially designed forms. At the end of the interview the patients were given a questionnaire to complete at home and to return in a prepaid envelope. Fifty-four patients returned a completed questionnaire. The second interview took place between 4 and 5 months later and it involved again all 59 patients. RESULTS
The results are divided into three sections. The first section is concerned with the individual’s beliefs as to who should and should not know about his condition. The second section focuses on the individual’s perceptions of risk of HIV and AIDS for himself and others and on the implications of these perceptions for his behavioural change. The third section explores the individual’s beliefs about others’ perceptions of the seriousness of HIV infection and their relationships to the patient’s own perceptions of the risk of AIDS for himself and for others. Beliefs about the disclosure of haemophilia and HIV antibody status Disclosure of the patient’s haemophilia. Table 2 shows the responses of people with haemophilia to the question as to whom they had told in the past, i.e. pre-AIDS, about their haemophilia. Many patients did not tell certain categories of people, such as employers, insurance companies and casual acquain-
HIV/AIDS
in people
Table 2. Disclosure of hacmophilia prior IO the AIDS epidemic
with haemophilia
75
Table 4. The effect of knowledge of HIV/AIDS on the use of factor
Severity of hacmophilia Whom told
Mild/moderate, n = 31 (%)
sc~erc, n = 28 (%)
2a (90) 2a (90) 18 (58) I 5(48) 3 (10)
25 (89) 24 (a6) 15(54) 14 (50) 4(14)
Friends Steady partners Insurance companies Employers Casual aquaintanccs
Haemophilia Mild/moderate n = 24 (%)
Reduced treatment
12 (50.0) 9 (37.5) 3(12.5)
No Yes Initially only
tances, about their haemophilia. A number of people said that they had confided information about their haemophilia only to their closest friends and they used the term ‘stigma’ to express their worries with respect to telling others. Twenty-seven patients (46%) said that after the emergence of the AIDS epidemic they had become more reluctant to disclose their haemophilia. This group included 11 of the 13 HIV antibody positive patients involved in the study. Several patients described potential employers as people to whom they would now be more reluctant than before to reveal their disease. Who should know about the patient’s HIV antibody statu.s.7All respondents knew their own HIV antibody status and were asked who else they thought should know about it. Their answers, which are shown in Table 3, were most probably affected by the different meanings that this question no doubt had for those who were HIV antibody positive and for those who were negative. Some of those who were HIV antibody negative said they did not mind who knew, but that it would be very different should they become positive. Forty-five patients (76%), both HIV antibody positive and negative, implied or explicitly stated that they were concerned about the stigmatising effect of HIV infection and AIDS. Thirteen patients, i.e. 22%, of the whole sample, said that they would not reveal their HIV antibody status even to their sexual partners, and 6, i.e. 46%, of HIV antibody positive patients would not do so. Perception of risk of HIV/AIDS to self and to others and implications for behauiour Perception of risk of HIV/AIDS to serf. When this study was initiated in 1986 a substantial proportion of patients had already been infected. However, the heat treatment of blood products that was introduced in 1985 was expected to eliminate further HIV infec-
Severe R =2-l (%)
Total n =51 (%)
20(74.1) 2 (7.4) 5(la.5)
32 (62.7) II (21.6) a(15.7)
tion and patients were informed accordingly. In the present study 46 out of 59 patients were HIV antibody negative at the time of the interview and were asked whether they thought they were at risk of being infected by HIV. Only 6 (13%) patients, 5 mildly/moderately and 1 severely affected, said that they were at no risk at all. The remaining 40 (87%) believed themselves to be at some risk of contracting HIV from blood products. Two of the severely affected patients thought that they must be at high risk of HIV infection as they had previously received very large amounts of blood products. Patients were asked whether their knowledge of transmission of HIV through blood products had affected their use of concentrates and the responses are shown in Table 4. The question was not applicable to 8 of the $9 patients, 7 of them claiming that they never took treatment and 1 saying that he had taken it last well before the AIDS epidemic had started. Nineteen patients (37%) out of the 51 who took treatment said that they had reduced it, although 8 of them said that they did so only initially. The advice of medical staff was that patients should continue to treat their bleeds as usual because the risk of untreated bleeds to their life was much greater than the risk of HIV infection. Table 4 shows that most of those who still reduced their treatment at the time of the study were mildly/moderately affected patients (chi = 6.2, df = 1, P < 0.05). The patients’ beliefs that they were at risk of HIV infection and AIDS as well as the evidence that they reduced their treatment raises the question as to why they thought the risk still existed. The respondents pointed out that, as well as the information they had obtained, other factors had influenced them and increased their feelings of being at risk: 18 (30%) patients mentioned the mass media, 11 (19%) referred to others’ attitudes and 8 (14%) patients said that their own feelings had affected the level of their fear of being at risk of infection.
‘Table 3. Categories of people whom people with haemophilia believed should know about their HIV status
Should know Hacmophilia
Should know Medical staff in hospital Sexual partners Family Family doctor Insurance company Employer Friends Workmates
HIV antibody status
Mild/moderate n -31 (%)
Severe n -28 (%)
Positive n = I3 1%)
Negative n =46 (%b
28 (90) 25 (81) 24 (77) 24 (77) I I (35) a (26) 10 (32) 6(19)
22 (79) 21 (75) 17(61) 22 (79) 7 (25) 4(14) 6(21) 1(4)
I I (85) 9 (69) 7 (54) 7 (54) 4(3l) 3 (23) 2(15)
40 (87) 33 (72) 39 (85) 38 (83) 15 (33) I4 (30) IO (22) 6 (13)
I (8)
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I. MARKOVA et al.
Perception of risk to sexual partners. At this stage of the research all respondents knew that HIV could be transmitted to sexual partners by seminal fluid. However, only 15 (38%) of the 39 patients who were sexually active used a condom during vaginal intercourse. Of the 24 (62%) patients who said they did not wear a condom, I4 (36%) were unmarried and 5 of the 14 were HIV antibody positive. For mildly/moderately affected patients, perception of risk to their partner was positively associated with their belief that the partner should be tested for HIV infection (r = 0.80, P < 0.01) and with the belief that the patient himself should use a condom (r = 0.76, P < O.Ol), although this belief was not associated with his actual use of a condom. For severely affected patients, however, perception of risk to the partner was not only positively associated with the belief that the patient himself should use a condom (r = 0.74, P < O.Ol), but also with his use of a condom (r = 0.67, P < 0.05). Patients’ comments during interview made it clear that using a condom caused problems not only for the unmarried patients who did not have a stable relationship but also for the married ones. One married HIV antibody positive patient said that he doubted whether any girl would ever be interested in him because of his combination of haemophilia and HIV infection. The vulnerability of another young patient with haemophilia who had not had a sexual relationship by the time he had sero-converted was also apparent from his comment that all the girls he knew ‘were on the pill’ and he would feel a real fool if he turned up with a condom. The tragedy of the situation was that as a result several unmarried patients drifted from one transient relationship to another. Seeing a girl one or twice and then leaving her freed the individual from the responsibility of disclosing his situation to her. As pointed out earlier in the results on ‘who should know about one’s HIV antibody status’, 13 patients (22%) stated they would not reveal to their sexual partners their HIV antibody status. Using a condom also created a problem for those in stable relationships, reminding them that AIDS was associated in people’s minds with ‘dirty’ behaviour, that is with promiscuity. In addition, some patients said that they had not actually told their wives about their HIV antibody positive status or about the possibility of their infection. The wives, however, implicitly understand their husbands’ problem and did not ask any questions. The use of a condom would have meant spelling out the issue of concern and the couples did not have the courage to do this. Perceived risk to non -sexual household contacts. At the beginning of the study in 1986 there was a considerable uncertainty about the transmission of HIV. It was a period when some dentists and medical staff put on ‘space suits’ before carrying out any surgical procedures with patients who were suspected of being HIV antibody positive, when firemen and. ambulance men worried about ‘catching AIDS’ from people they were helping and press hysteria reached its peak. The respondents in our study were asked whether they thought other members of the family or their flat-mates were at risk of contracting HIV. Fifty-two (88%) of the 59 patients thought that there
was no risk to non-sexual household contacts. However, 15 of the HIV antibody negative patients remarked that there would be a risk to others if they were to be infected by HIV. In spite of the fact that most patients gave correct answers concerning the risk to household contacts, they reported that their family members associated HIV and AIDS with uncleanliness and the word ‘dirty’ was raised on many occasions. One young HIV antibody positive patient commented that his mum ‘had got a bit too fussy. She was always cleaning up and the house stank of disinfectant’. Such comments were confirmed by the mothers themselves when they spoke to the counsellor informally. One mother said that she had ‘spent a small fortune on bleach since she knew about HIV’. She was very concerned that nobody should get infected by contact with her household and she did not want anyone to think that she kept a ‘dirty house’. Another mother admitted that she poured disinfectant down the toilet after her son had been there. Of course, she did this without his knowledge. Both for the mildly/moderately and the severely affected patients the perception of risk to flat-mates or family members was associated with the perception of their own risk (r = 0.53, P c 0.05;’ r = 0.65, P < 0.01 respectively). Beliefs about others' perceptions of seriousness of HIV infection
Throughout the results in the previous two sections, references have been made to patients’ and mothers’ comments expressing fears of stigma with respect to haemophilia and AIDS. While these comments provide important insights into patients’ construction of illness, in this section more systematic data will be presented concerning patients’ beliefs about perceptions of HIV infection by others. Perception of seriousness of HIV infection by self and others. In order to explore patients’ perceived
seriousness of HIV infection by self and by others as compared to the perceived seriousness of other conditions, the respondents were asked to answer two questions. First, how they themselves rated the seriousness of 10 conditions, one of them being HIV infection. Secondly, how they thought other people rated the seriousness of those conditions, in this case, for example, the manager of a life assurance company. In both cases, the seriousness of conditions was rated by respondents on a five-point scale, l-5, from very low to very high. The conditions rated are shown Table 5. Self- and
supposed manager-ratings
of the seriousness
conditions Condition cancer HIV Chronic bronchitis Haemophilia Heart attack Epilepsy Diabetes High blood pressure Stomach ulcer Overweight
Self-rating (means) 4.3 3.6 3.6 3.5 3.4 3.2 2.9 2.6 2.6 2.4
Manager-rating (means) 4.4 3.8 3.3 3.3 3.0 3.0 2.6 2.3 2.1 1.9
of
HIV/AIDS
77
in people with haemophilia
in Table 5. The reason for the choice of these particular conditions was the frequency with which patients with these conditions were referred to the hospital’s out-patient clinics and we assumed, therefore, that these conditions would be well known also to the patients involved in the study. Table 5 shows that the means for the majority of conditions are higher for the self- than for the manager-ratings (t = 3, P < O.Ol), showing that the patients themselves perceived the conditions as more serious than they thought the manager would perceive them to be. The rank orders of self- and manager-ratings of the 10 conditions were the same. For 9 conditions there were no differences in the means of the ratings by the mildly/moderately and of the ratings by severely affected patients. There was just one difference in the means by the HIV antibody positive and by the HIV antibody negative patients in the case of HIV antibody status itself (two-tailed Mann-Whitney U-test, z = 2.01, P < 0.04; see Table 6). This indicates that the HIV antibody positive patients rated HIV antibody positive status as less serious than did the HIV antibody negative patients. For supposed manager-ratings, however, there were no differences in the means for HIV antibody status between the HIV antibody positive and negative patients, with all groups of patients rating HIV infection between 3.7 and 3.8. Patients’ beliefs about others’ perceptions of HIV infection. Patients were asked to rate on a five-point scale, l-5, from very low to very high, how they thought others perceived seriousness of HIV infection. These ratings were correlated with the patients’ responses concerning their own perceptions of the risk of HIV to themselves and others. No relationships between the two sets of data were found for patients who were HIV antibody positive. However, in the case of HIV antibody negative patients several correlations between their beliefs about others’ perceptions and their own perceptions were found. In particular, if HIV antibody negative haemophilic patients believed that others perceived HIV infection was serious they tended: To reduce their treatment by r = 0.46 factor VIII 0.55 To wish not to have children To be certain about their own 0.58 risk of AIDS 0.69 To be concerned about AIDS To perceive family members to be 0.63 at risk of HIV To perceive their partners to be 0.66 at risk of HIV 0.43 To feel no control over AIDS All these correlations proved to be statistically significant at 0.05 level.
DISCUSSlON The data show that, since the emergence of the AIDS epidemic, people with haemophilia have become less willing even than before to disclose the fact that they have haemophilia. It is interesting, though, that most patients believe that the family doctor should know of their HIV antibody status, although the proportion of the HIV antibody positive patients supporting this view is smaller than in the other groups. It is possible that HIV antibody positive patients are more reticent about informing the family doctor about their status because there has been much discussion about whether family doctors should maintain patients’ confidentiality or whether sexual partners and other medical professionals involved in the treatment of HIV antibody positive patient should be informed. Most of the patients said that their sexual partners should know of their HIV antibody status. However, it is also worrying that a considerable proportion of severely affected patients and of those who were HIV antibody positive would not reveal their HIV antibody status to their sexual partners and that a number of them did not wear a condom. It appears from this study that the main reason for patients’ failure to apply safe sex practices was not their misperception of the risk of HIV to their partners, embarrassment over the use of a condom or reluctance to use it because of reduced pleasure of sexual intercourse [18]. Rather, the patients* expressed beliefs regarding their partners* perceptions clearly indicated their fear of being perceived by their partners as inferior human beings and of being humiliated or rejected by their partners as unworthy. The perceived risk of HIV/AIDS to non-sexual household contacts by a proportion of patients, and the associations of patients and their families of HIV/AIDS with dirt is reminiscent of the study by Jodelet [9]. In this insightful research Jodelet has shown how villagers in France who offered accommodation to ex-hospital mental patients, being paid for doing so by the government, developed very effective strategies to isolate themselves from these ex-patients by scheduling their meals at different times from their own, and washing their clothing separately from their own. In a similar vein, Sontag [ 191refers to perceived contagiousness of illnesses and to irrational and implicit beliefs with respect to AIDS. Irrational though such beliefs may be, they must be taken into consideration both by researchers and by health education campaigns because they are part of the social reality to which people respond. The self-ratings of HIV antibody positive patients of the seriousness of HIV show that this sub-group of patients did not consider HIV such a serious
Table 6. Self- and supposed manager-ratings of the sariousncss of haemophilia and HIV Manager-ratings (means)
Self-ratings (means) Haemophilia Condition
HIV antibody status
Mild/mod.
severe
Positive
3.2 4.0
3.8 2.6
3.7 2.3.
Haemophilia HIV lz = 2.01, P < 0.04.
Haemophilia
HIV antibody status
Negative
Mild/mod.
Severe
Positive
Negative
3.2 3.8
3.3 3.8
3.2 3.7
3.2 3.8
3.3 3.7
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I. MARKOVAet al.
condition as did the other sub-groups. Several possible explanations for this can be offered. One possibility is that their coping strategy was to deny the seriousness of HIV. Moreover, if one has no control physically over one’s condition one can regain at least some feeling of control through a mental determination to fight it. Another possible reason for diminishing the seriousness of HIV infection is that the severely affected patients who were HIV antibody positive had overcome many of the life-threatening problems of haemophilia and for these patients HIV infection was yet another problem to cope with and therefore relatively of a smaller importance than for those with mild/moderate haemophilia [20]. The data show that patients who reduced selftreatment by clotting factor concentrates were mildly/moderately affected patients who were at a smaller risk of HIV than the severely affected because they took their treatment less often. However, since mildly/moderately affected patients do not have as severe and frequent bleeds as the severely affected, not treating their bleeds does not create such a health hazard for them as for the latter. Therefore, the mildly/moderately affected were ignoring the advice of their doctors that the treatment was safe and were gambling between risk of HIV and the risk of nontreatment of their haemophilia. In contrast, patients with severe haemophilia could not afford such a gamble because not treating their bleeds could be extremely painful and would most certainly endanger their lives. It appears that beliefs about others’ perceptions were associated with the patients’ own perceptions of the risk of AIDS only in the case of a patient who was HIV antibody negative. However, it is difficult to explain what precisely these statistical associations mean. It could be that the patient’s construction of HIV/AIDS already includes both self- and otherawareness with respect to HIV/AIDS [22,23], rather than that there are any cause-effect relationships between the two. It is significant, though, that the relationships between self- and other-perceptions apply only in the case of HIV antibody negative patients. By and large these patients include those with mild/moderate haemophilia and some severely affected patients. We have noted earlier that it was mainly patients with mild/moderate haemophilia who reduced their treatment by factor VIII and that the majority of patients who were HIV antibody negative still believed they were at least at some risk of HIV infection. This means that these patients had to live with uncertainty about their health and it is likely that their uncertainties expressed themselves in the associations between their own perceptions of the risk of HIV/AIDS and their beliefs of others’ perceptions of HIV. Although one must be careful about the interpretations of these findings, they should be taken seriously in health education. In conclusion, the results of the present study clearly show that patients with haemophilia are acutely aware that other people have beliefs about HIV infection and AIDS and that these beliefs may be different from their own, thus threatening the patients’ social selves. It is likely that patients act on such beliefs either by not disclosing their haemophilia and HIV antibody status to others or by failing to
modify their sexual practices. Moreover, the data reported in this study imply a complex interdependence between the individuals* perception of their risk, their experience with haemophilia, and their beliefs about others’ perceptions and images of HIV infection and AIDS, although it is difficult to infer any cause and effect relationships between these interdependencies. It is thus clear that knowledge of HIV/AIDS is intimately related to the person’s self. It is knowledge that may be threatening to the individual’s physical and mental condition and to his or her social identity. It involves not only the individual’s own belief about HIV/AIDS but also his or her awareness of others’ beliefs and of social representations of HIV/AIDS [21]. An understanding by researchers of the self as expressed by the individual’s emotions and perceptions of HIV/AIDS, and the other as manifested through public representations of HIV/AIDS, is essential for any theoretical progress in the study of health related issues as well as for health education effectiveness. Acknowledgemenfs-We wish to acknowledge financial supsort from the SHHD. We are grateful to Mrs J. Watson for carrying out some of the interviews, and to Mrs E. W. Somerville for typing this paper.
REFERENCES 1. Hogarth R. Judgemenf and Choice. Wiley, Chichester, 1980. 2. Cohen L. J. Can human irrationality be experimentally demonstrated? Behael Brain Sci. 4, 317-370, 1981. 3. Aggleton P. Evaluating health education about AIDS. In AIDS: Social Represemations, Social Practices (Edited by Aggleton P., Hart G. and Davies P.) The Falmer Press, New York, 1989. 4. Douglas M. Risk Acceprabiliry According to the Social Sciences. Routledge & Kegan Paul, London, 1988. 5. Douglas M. Purity and Danger. Routledge & Kegan Paul, London, 1966. 6. Herzlich C. and Pierret J. The social construction of the patient: Patients and illnesses in other ages. Sot. Sci. Med. 20, 145-151, 1985. 7. Herzlich C. and Pierret J. Malades d’hier, malades d’aujourd’hui: de la mart collective au devoir de guerisson. Payot, Paris, 1984; Illness and Self in Society
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0277-9536 90 53.00 + 0.00 1990 Pergamon Press plc
SELF- AND OTHER-AWARENESS OF THE RISK OF HIV/AIDS IN PEOPLE WITH HAEMOPHILIA AND IMPLICATIONS FOR BEHAVIOURAL CHANGE I. MARKOVA,’ P. A. WILKIE,’ S. A. NAJI’ and C. D. FORBES’ ‘Department of Psychology, University of Stirling, Stirling FK9 4LA, ‘Health Service Research Unit, University of Aberdeen, Drew Kay Wing, Polwarth Building, Foresthill, Aberdeen AB9 2ZD and 3Department of Medicine, Ninewells Hospital and Medical School, Dundee DDI 9SY, Scotland Abstract-Many people with haemophilia have been infected by HIV through the contamination
of blood products they need for treatment of their bleeding. This study explored the perceptions of people with
haemophilia of their own and others’ risk of HIV/AIDS and their beliefs about others’ perceptions of HIV/AIDS. The results have shown that many patients are not willing to disclose the existence of their haemophilia to certain categories of people and have a firm view of who should and should not know about their HIV antibody status. The patients’ beliefs of others’ perceptions of HIV and AIDS are associated with (a) their perceptions of risk for themselves and others and (b) with behavioural change to prevent the spread of HIV. Key words-haemophilia, perceptions
HIV/AIDS, self- and other-awareness,
INTRODUCTION
perception of risk, beliefs about others’
the possible implications of such perceptions for behavioural change preventing the spread of HIV infection. Living with haemophilia, a genetic disorder of blood clotting that affects only men, imposes a constant degree of uncertainty as to how best to organise one’s life due to the hour by hour unpredictability of the condition. The person may be well at one moment yet at the next can have a bleed, the seriousness of which can range from minor to lifethreatening. Although he may not show any visible symptoms or signs of illness, he may suffer excruciating pain. Previous research [14] has indicated that public ignorance and the stigmatising effects of haemophilia create a considerable variety of problems for patients and their families. We have found that about one third of people with haemophilia do not tell their employers that they suffer from the condition even if concealment of haemophilia may have adverse effects for their health [15]. The main argument for not telling employers about their haemophilia is the patients’ belief that employers are ignorant about the disease and its manifestation, thinking, for example, that the patient can bieed to death from a pin prick. Shelley (161, himself having haemophilia, writes in his autobiography how as a young man he wished to be accepted by society as a person in his own right and not given sympathy or special consideration as an ‘untouchable’, and he describes several strategies he adopted to cope with ‘others’ when they inquired about his health. In 1982 HIV was identified in factor concentrates used for the treatment of haemophilia. Unfortunately a great number of people with haemophilia worldwide were already infected by HIV because of the use of contaminated concentrates. These people. therefore, must live with two problems. First, the severe
Psychological theories concerned with health-oriented behavioural changes often assume that such changes result from the individual’s knowledge of the disease and his or her ability to process the relevant information and evaluate the risk to him- or herself. In other words, it is the cognitive faculties of the individual that are the focus of the researcher’s attention [l, 21. Therefore, the provision of information about a disease, and the facilitation of comprehension, understanding and memory, are considered to be the essential prerequisite of any health-oriented behavioural change [3]. It follows, moreover, that if the individual does not behave according to this model, it is because of his or her individual characteristics, be it irresponsibility, denial of the problem, misperception of the risk, or misunderstanding of statistical probability [4]. Such psychological theories and health education programmes rarely consider that illness is not just an impairment of the individual’s body or mind but also a social construct with negative connotations [5-g]. Illness and disease have been variously construed as the ‘night-side of life’ [IO], ‘punishment’ [I, ‘deviance’ [I I], ‘social death’, ‘destruction’ [12], ‘social stigma’ [13], to give but a few examples. Since these constructions are part of our social life, people with illness or disability often develop strategies enabling them to eliminate or at least to reduce the effect of such social constructions on themselves. These strategies, however, may work against behavioural changes designed to prevent the spread of the disease. The present study explored the perceptions of people with haemophilia of their own and of others’ risk of HIV/AIDS, and their beliefs about others’ perceptions of HIV/AIDS. In addition, it focused on 73
74
I. MARKOVAet al.
form of haemophilia is itself life-threatening for patients. They must cope with unpredictable bleedings and the possibility of contracting hepatitis from their treatment; they suffer acute and severe pain and their life is restricted in a large number of ways [17]. Second, many of them must live with the fear that their HIV infection may lead to full-blown AIDS. Moreover, HIV infection and AIDS present an additional stigmatising problem for people with haemophilia: AIDS is a sexually transmitted disease that, at the time of this investigation, the mass media associated largely with promiscuity and homosexuality. Of those affected by HIV infection, people with haemophilia form only 1%. METHOD
This study was part of a longitudinal research nroiect carried out in the West of Scotland into iesponses of people with haemophilia to the risk of HIV infection and of AIDS. Two semi-structured interviews and a questionnaire were developed and piloted with 10 patients who had haemophilia and were registered at the Glasgow Royal Infirmary. The first interview included the following issues: to whom the individual disclosed information about his haemophilia before the AIDS epidemic; whether the individual discloses information about his haemophilia now; and who should and should not know about the individual’s HIV antibody status. The second interview was concerned with the individual’s perception of risk to himself and others, and with his behavioural changes to protect himself and others from HIV infection. The questionnaire was concerned with the patients’ and of others’ perceptions of the seriousness of HIV infection in comparison with other kinds of disease. Participants
and procedure
Participants of the study were patients with haemophilia who attended the Haemophilia Reference Centre at Glasgow Royal Infirmary, which serves patients from the whole of the West of Scotland including the Isles. The project started in 1986, by which time blood products were being heat treated to destroy any HIV that might have slipped through the screening process during blood collection. At that time, many patients with severe haemophilia were already known to be HIV antibody positive but the general belief amongst the professionals was that only a small proportion of those infected would go on to develop full-blown AIDS. Socio-demographic and medical characteristics of the patients are given in Table 1. Haemophilia is usually classified as mild, moderate or severe according to the concentration of the clotting factor present in blood plasma and also according to how easily the patient bleeds. Clinically, the concentration of the clotting factor correlates with the amount and severity of the bleedings the patient might suffer. While mildly affected patients usually need infusion of concentrate when undergoing surgical operations, severely affected patients often bleed spontaneously or after emotional trauma. In the present study only 11 moderately affected patients were available and since their medical characteristics, including HIV
Table I. So&-demographic and medical characteristics of the participants Severity of hacmophilia Characteristic
Mild/moderate hacm.
Severe hacm.
Number Range Age Mean
31 17-n years 36.2 years
28 17-70 years 34.8 years
Marital status: Single Married Employment: ;Iyial class I + II w+v Unemployed Retired Student HIV antibody status: Positive Negative
II 20
13 I5
7 8 3 9 2 2
5 4 I 14
I
I2 16
30
I 3
antibody status, were more like those of the mildly than the severely affected patients, for the purpose of analysis we combined the moderately and mildly affected patients into one group. Of the 59 in the present sample, 31 were classified as mildly/ moderately affected and 28 were severely affected by haemophilia. Of the 28 severely affected, 12 patients were HIV antibody positive. Only 1 patient from those mildly/moderately affected was infected by HIV. Patients were interviewed by the counsellor involved in the study when they came to hospital for a review of their clinical condition. The first interview lasted about an hour. It was tape-recorded with the prior permission of the patients and the data were then transcribed onto specially designed forms. At the end of the interview the patients were given a questionnaire to complete at home and to return in a prepaid envelope. Fifty-four patients returned a completed questionnaire. The second interview took place between 4 and 5 months later and it involved again all 59 patients. RESULTS
The results are divided into three sections. The first section is concerned with the individual’s beliefs as to who should and should not know about his condition. The second section focuses on the individual’s perceptions of risk of HIV and AIDS for himself and others and on the implications of these perceptions for his behavioural change. The third section explores the individual’s beliefs about others’ perceptions of the seriousness of HIV infection and their relationships to the patient’s own perceptions of the risk of AIDS for himself and for others. Beliefs about the disclosure of haemophilia and HIV antibody status Disclosure of the patient’s haemophilia. Table 2 shows the responses of people with haemophilia to the question as to whom they had told in the past, i.e. pre-AIDS, about their haemophilia. Many patients did not tell certain categories of people, such as employers, insurance companies and casual acquain-
HIV/AIDS
in people
Table 2. Disclosure of hacmophilia prior IO the AIDS epidemic
with haemophilia
75
Table 4. The effect of knowledge of HIV/AIDS on the use of factor
Severity of hacmophilia Whom told
Mild/moderate, n = 31 (%)
sc~erc, n = 28 (%)
2a (90) 2a (90) 18 (58) I 5(48) 3 (10)
25 (89) 24 (a6) 15(54) 14 (50) 4(14)
Friends Steady partners Insurance companies Employers Casual aquaintanccs
Haemophilia Mild/moderate n = 24 (%)
Reduced treatment
12 (50.0) 9 (37.5) 3(12.5)
No Yes Initially only
tances, about their haemophilia. A number of people said that they had confided information about their haemophilia only to their closest friends and they used the term ‘stigma’ to express their worries with respect to telling others. Twenty-seven patients (46%) said that after the emergence of the AIDS epidemic they had become more reluctant to disclose their haemophilia. This group included 11 of the 13 HIV antibody positive patients involved in the study. Several patients described potential employers as people to whom they would now be more reluctant than before to reveal their disease. Who should know about the patient’s HIV antibody statu.s.7All respondents knew their own HIV antibody status and were asked who else they thought should know about it. Their answers, which are shown in Table 3, were most probably affected by the different meanings that this question no doubt had for those who were HIV antibody positive and for those who were negative. Some of those who were HIV antibody negative said they did not mind who knew, but that it would be very different should they become positive. Forty-five patients (76%), both HIV antibody positive and negative, implied or explicitly stated that they were concerned about the stigmatising effect of HIV infection and AIDS. Thirteen patients, i.e. 22%, of the whole sample, said that they would not reveal their HIV antibody status even to their sexual partners, and 6, i.e. 46%, of HIV antibody positive patients would not do so. Perception of risk of HIV/AIDS to self and to others and implications for behauiour Perception of risk of HIV/AIDS to serf. When this study was initiated in 1986 a substantial proportion of patients had already been infected. However, the heat treatment of blood products that was introduced in 1985 was expected to eliminate further HIV infec-
Severe R =2-l (%)
Total n =51 (%)
20(74.1) 2 (7.4) 5(la.5)
32 (62.7) II (21.6) a(15.7)
tion and patients were informed accordingly. In the present study 46 out of 59 patients were HIV antibody negative at the time of the interview and were asked whether they thought they were at risk of being infected by HIV. Only 6 (13%) patients, 5 mildly/moderately and 1 severely affected, said that they were at no risk at all. The remaining 40 (87%) believed themselves to be at some risk of contracting HIV from blood products. Two of the severely affected patients thought that they must be at high risk of HIV infection as they had previously received very large amounts of blood products. Patients were asked whether their knowledge of transmission of HIV through blood products had affected their use of concentrates and the responses are shown in Table 4. The question was not applicable to 8 of the $9 patients, 7 of them claiming that they never took treatment and 1 saying that he had taken it last well before the AIDS epidemic had started. Nineteen patients (37%) out of the 51 who took treatment said that they had reduced it, although 8 of them said that they did so only initially. The advice of medical staff was that patients should continue to treat their bleeds as usual because the risk of untreated bleeds to their life was much greater than the risk of HIV infection. Table 4 shows that most of those who still reduced their treatment at the time of the study were mildly/moderately affected patients (chi = 6.2, df = 1, P < 0.05). The patients’ beliefs that they were at risk of HIV infection and AIDS as well as the evidence that they reduced their treatment raises the question as to why they thought the risk still existed. The respondents pointed out that, as well as the information they had obtained, other factors had influenced them and increased their feelings of being at risk: 18 (30%) patients mentioned the mass media, 11 (19%) referred to others’ attitudes and 8 (14%) patients said that their own feelings had affected the level of their fear of being at risk of infection.
‘Table 3. Categories of people whom people with haemophilia believed should know about their HIV status
Should know Hacmophilia
Should know Medical staff in hospital Sexual partners Family Family doctor Insurance company Employer Friends Workmates
HIV antibody status
Mild/moderate n -31 (%)
Severe n -28 (%)
Positive n = I3 1%)
Negative n =46 (%b
28 (90) 25 (81) 24 (77) 24 (77) I I (35) a (26) 10 (32) 6(19)
22 (79) 21 (75) 17(61) 22 (79) 7 (25) 4(14) 6(21) 1(4)
I I (85) 9 (69) 7 (54) 7 (54) 4(3l) 3 (23) 2(15)
40 (87) 33 (72) 39 (85) 38 (83) 15 (33) I4 (30) IO (22) 6 (13)
I (8)
76
I. MARKOVA et al.
Perception of risk to sexual partners. At this stage of the research all respondents knew that HIV could be transmitted to sexual partners by seminal fluid. However, only 15 (38%) of the 39 patients who were sexually active used a condom during vaginal intercourse. Of the 24 (62%) patients who said they did not wear a condom, I4 (36%) were unmarried and 5 of the 14 were HIV antibody positive. For mildly/moderately affected patients, perception of risk to their partner was positively associated with their belief that the partner should be tested for HIV infection (r = 0.80, P < 0.01) and with the belief that the patient himself should use a condom (r = 0.76, P < O.Ol), although this belief was not associated with his actual use of a condom. For severely affected patients, however, perception of risk to the partner was not only positively associated with the belief that the patient himself should use a condom (r = 0.74, P < O.Ol), but also with his use of a condom (r = 0.67, P < 0.05). Patients’ comments during interview made it clear that using a condom caused problems not only for the unmarried patients who did not have a stable relationship but also for the married ones. One married HIV antibody positive patient said that he doubted whether any girl would ever be interested in him because of his combination of haemophilia and HIV infection. The vulnerability of another young patient with haemophilia who had not had a sexual relationship by the time he had sero-converted was also apparent from his comment that all the girls he knew ‘were on the pill’ and he would feel a real fool if he turned up with a condom. The tragedy of the situation was that as a result several unmarried patients drifted from one transient relationship to another. Seeing a girl one or twice and then leaving her freed the individual from the responsibility of disclosing his situation to her. As pointed out earlier in the results on ‘who should know about one’s HIV antibody status’, 13 patients (22%) stated they would not reveal to their sexual partners their HIV antibody status. Using a condom also created a problem for those in stable relationships, reminding them that AIDS was associated in people’s minds with ‘dirty’ behaviour, that is with promiscuity. In addition, some patients said that they had not actually told their wives about their HIV antibody positive status or about the possibility of their infection. The wives, however, implicitly understand their husbands’ problem and did not ask any questions. The use of a condom would have meant spelling out the issue of concern and the couples did not have the courage to do this. Perceived risk to non -sexual household contacts. At the beginning of the study in 1986 there was a considerable uncertainty about the transmission of HIV. It was a period when some dentists and medical staff put on ‘space suits’ before carrying out any surgical procedures with patients who were suspected of being HIV antibody positive, when firemen and. ambulance men worried about ‘catching AIDS’ from people they were helping and press hysteria reached its peak. The respondents in our study were asked whether they thought other members of the family or their flat-mates were at risk of contracting HIV. Fifty-two (88%) of the 59 patients thought that there
was no risk to non-sexual household contacts. However, 15 of the HIV antibody negative patients remarked that there would be a risk to others if they were to be infected by HIV. In spite of the fact that most patients gave correct answers concerning the risk to household contacts, they reported that their family members associated HIV and AIDS with uncleanliness and the word ‘dirty’ was raised on many occasions. One young HIV antibody positive patient commented that his mum ‘had got a bit too fussy. She was always cleaning up and the house stank of disinfectant’. Such comments were confirmed by the mothers themselves when they spoke to the counsellor informally. One mother said that she had ‘spent a small fortune on bleach since she knew about HIV’. She was very concerned that nobody should get infected by contact with her household and she did not want anyone to think that she kept a ‘dirty house’. Another mother admitted that she poured disinfectant down the toilet after her son had been there. Of course, she did this without his knowledge. Both for the mildly/moderately and the severely affected patients the perception of risk to flat-mates or family members was associated with the perception of their own risk (r = 0.53, P c 0.05;’ r = 0.65, P < 0.01 respectively). Beliefs about others' perceptions of seriousness of HIV infection
Throughout the results in the previous two sections, references have been made to patients’ and mothers’ comments expressing fears of stigma with respect to haemophilia and AIDS. While these comments provide important insights into patients’ construction of illness, in this section more systematic data will be presented concerning patients’ beliefs about perceptions of HIV infection by others. Perception of seriousness of HIV infection by self and others. In order to explore patients’ perceived
seriousness of HIV infection by self and by others as compared to the perceived seriousness of other conditions, the respondents were asked to answer two questions. First, how they themselves rated the seriousness of 10 conditions, one of them being HIV infection. Secondly, how they thought other people rated the seriousness of those conditions, in this case, for example, the manager of a life assurance company. In both cases, the seriousness of conditions was rated by respondents on a five-point scale, l-5, from very low to very high. The conditions rated are shown Table 5. Self- and
supposed manager-ratings
of the seriousness
conditions Condition cancer HIV Chronic bronchitis Haemophilia Heart attack Epilepsy Diabetes High blood pressure Stomach ulcer Overweight
Self-rating (means) 4.3 3.6 3.6 3.5 3.4 3.2 2.9 2.6 2.6 2.4
Manager-rating (means) 4.4 3.8 3.3 3.3 3.0 3.0 2.6 2.3 2.1 1.9
of
HIV/AIDS
77
in people with haemophilia
in Table 5. The reason for the choice of these particular conditions was the frequency with which patients with these conditions were referred to the hospital’s out-patient clinics and we assumed, therefore, that these conditions would be well known also to the patients involved in the study. Table 5 shows that the means for the majority of conditions are higher for the self- than for the manager-ratings (t = 3, P < O.Ol), showing that the patients themselves perceived the conditions as more serious than they thought the manager would perceive them to be. The rank orders of self- and manager-ratings of the 10 conditions were the same. For 9 conditions there were no differences in the means of the ratings by the mildly/moderately and of the ratings by severely affected patients. There was just one difference in the means by the HIV antibody positive and by the HIV antibody negative patients in the case of HIV antibody status itself (two-tailed Mann-Whitney U-test, z = 2.01, P < 0.04; see Table 6). This indicates that the HIV antibody positive patients rated HIV antibody positive status as less serious than did the HIV antibody negative patients. For supposed manager-ratings, however, there were no differences in the means for HIV antibody status between the HIV antibody positive and negative patients, with all groups of patients rating HIV infection between 3.7 and 3.8. Patients’ beliefs about others’ perceptions of HIV infection. Patients were asked to rate on a five-point scale, l-5, from very low to very high, how they thought others perceived seriousness of HIV infection. These ratings were correlated with the patients’ responses concerning their own perceptions of the risk of HIV to themselves and others. No relationships between the two sets of data were found for patients who were HIV antibody positive. However, in the case of HIV antibody negative patients several correlations between their beliefs about others’ perceptions and their own perceptions were found. In particular, if HIV antibody negative haemophilic patients believed that others perceived HIV infection was serious they tended: To reduce their treatment by r = 0.46 factor VIII 0.55 To wish not to have children To be certain about their own 0.58 risk of AIDS 0.69 To be concerned about AIDS To perceive family members to be 0.63 at risk of HIV To perceive their partners to be 0.66 at risk of HIV 0.43 To feel no control over AIDS All these correlations proved to be statistically significant at 0.05 level.
DISCUSSlON The data show that, since the emergence of the AIDS epidemic, people with haemophilia have become less willing even than before to disclose the fact that they have haemophilia. It is interesting, though, that most patients believe that the family doctor should know of their HIV antibody status, although the proportion of the HIV antibody positive patients supporting this view is smaller than in the other groups. It is possible that HIV antibody positive patients are more reticent about informing the family doctor about their status because there has been much discussion about whether family doctors should maintain patients’ confidentiality or whether sexual partners and other medical professionals involved in the treatment of HIV antibody positive patient should be informed. Most of the patients said that their sexual partners should know of their HIV antibody status. However, it is also worrying that a considerable proportion of severely affected patients and of those who were HIV antibody positive would not reveal their HIV antibody status to their sexual partners and that a number of them did not wear a condom. It appears from this study that the main reason for patients’ failure to apply safe sex practices was not their misperception of the risk of HIV to their partners, embarrassment over the use of a condom or reluctance to use it because of reduced pleasure of sexual intercourse [18]. Rather, the patients* expressed beliefs regarding their partners* perceptions clearly indicated their fear of being perceived by their partners as inferior human beings and of being humiliated or rejected by their partners as unworthy. The perceived risk of HIV/AIDS to non-sexual household contacts by a proportion of patients, and the associations of patients and their families of HIV/AIDS with dirt is reminiscent of the study by Jodelet [9]. In this insightful research Jodelet has shown how villagers in France who offered accommodation to ex-hospital mental patients, being paid for doing so by the government, developed very effective strategies to isolate themselves from these ex-patients by scheduling their meals at different times from their own, and washing their clothing separately from their own. In a similar vein, Sontag [ 191refers to perceived contagiousness of illnesses and to irrational and implicit beliefs with respect to AIDS. Irrational though such beliefs may be, they must be taken into consideration both by researchers and by health education campaigns because they are part of the social reality to which people respond. The self-ratings of HIV antibody positive patients of the seriousness of HIV show that this sub-group of patients did not consider HIV such a serious
Table 6. Self- and supposed manager-ratings of the sariousncss of haemophilia and HIV Manager-ratings (means)
Self-ratings (means) Haemophilia Condition
HIV antibody status
Mild/mod.
severe
Positive
3.2 4.0
3.8 2.6
3.7 2.3.
Haemophilia HIV lz = 2.01, P < 0.04.
Haemophilia
HIV antibody status
Negative
Mild/mod.
Severe
Positive
Negative
3.2 3.8
3.3 3.8
3.2 3.7
3.2 3.8
3.3 3.7
78
I. MARKOVAet al.
condition as did the other sub-groups. Several possible explanations for this can be offered. One possibility is that their coping strategy was to deny the seriousness of HIV. Moreover, if one has no control physically over one’s condition one can regain at least some feeling of control through a mental determination to fight it. Another possible reason for diminishing the seriousness of HIV infection is that the severely affected patients who were HIV antibody positive had overcome many of the life-threatening problems of haemophilia and for these patients HIV infection was yet another problem to cope with and therefore relatively of a smaller importance than for those with mild/moderate haemophilia [20]. The data show that patients who reduced selftreatment by clotting factor concentrates were mildly/moderately affected patients who were at a smaller risk of HIV than the severely affected because they took their treatment less often. However, since mildly/moderately affected patients do not have as severe and frequent bleeds as the severely affected, not treating their bleeds does not create such a health hazard for them as for the latter. Therefore, the mildly/moderately affected were ignoring the advice of their doctors that the treatment was safe and were gambling between risk of HIV and the risk of nontreatment of their haemophilia. In contrast, patients with severe haemophilia could not afford such a gamble because not treating their bleeds could be extremely painful and would most certainly endanger their lives. It appears that beliefs about others’ perceptions were associated with the patients’ own perceptions of the risk of AIDS only in the case of a patient who was HIV antibody negative. However, it is difficult to explain what precisely these statistical associations mean. It could be that the patient’s construction of HIV/AIDS already includes both self- and otherawareness with respect to HIV/AIDS [22,23], rather than that there are any cause-effect relationships between the two. It is significant, though, that the relationships between self- and other-perceptions apply only in the case of HIV antibody negative patients. By and large these patients include those with mild/moderate haemophilia and some severely affected patients. We have noted earlier that it was mainly patients with mild/moderate haemophilia who reduced their treatment by factor VIII and that the majority of patients who were HIV antibody negative still believed they were at least at some risk of HIV infection. This means that these patients had to live with uncertainty about their health and it is likely that their uncertainties expressed themselves in the associations between their own perceptions of the risk of HIV/AIDS and their beliefs of others’ perceptions of HIV. Although one must be careful about the interpretations of these findings, they should be taken seriously in health education. In conclusion, the results of the present study clearly show that patients with haemophilia are acutely aware that other people have beliefs about HIV infection and AIDS and that these beliefs may be different from their own, thus threatening the patients’ social selves. It is likely that patients act on such beliefs either by not disclosing their haemophilia and HIV antibody status to others or by failing to
modify their sexual practices. Moreover, the data reported in this study imply a complex interdependence between the individuals* perception of their risk, their experience with haemophilia, and their beliefs about others’ perceptions and images of HIV infection and AIDS, although it is difficult to infer any cause and effect relationships between these interdependencies. It is thus clear that knowledge of HIV/AIDS is intimately related to the person’s self. It is knowledge that may be threatening to the individual’s physical and mental condition and to his or her social identity. It involves not only the individual’s own belief about HIV/AIDS but also his or her awareness of others’ beliefs and of social representations of HIV/AIDS [21]. An understanding by researchers of the self as expressed by the individual’s emotions and perceptions of HIV/AIDS, and the other as manifested through public representations of HIV/AIDS, is essential for any theoretical progress in the study of health related issues as well as for health education effectiveness. Acknowledgemenfs-We wish to acknowledge financial supsort from the SHHD. We are grateful to Mrs J. Watson for carrying out some of the interviews, and to Mrs E. W. Somerville for typing this paper.
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