- Email: [email protected]
Attitudes toward AIDS among a Low Risk Group of Women
j( 1(1’
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CLINICAL STUDIES
P A M E L A S.F. G L E N N , C N M , M S L E T I T I A E. N A N C E - S P R O N S O N , M H A MARION McCARTNEY, CNM C H A R L E S E. Y E S A L I S . S c D
Attitudes toward ALDS among a Low= Risk Group of Women
t has been said that “with the current shift in focus from high-risk groups to high-risk behaviors, the heterosexual population is identified more frequently as being at risk for exposure to the AIDS [acquired immunodeficiency syndrome] virus.”’ Likewise, it has been predicted2 that the proportion of AIDS cases resulting from heterosexual contact will increase from 1.5% in 1983 to 5% by 1991.* A recent report by the Centers for Disease Control stated that in 1989, cases of AIDS attributable to heterosexual contact had climbed to 4.4% of the total number of cases, an increase of 27% from 1988.3The same report found that the number of cases of AIDS in females in 1989 increased by 11%over the previous year.3
The Centers f o r Disease Control recently reported that in 1989, cases of AIDS attributable to heterosexual contact had increased 27%from 1988.
Thus, the need for educational programs designed to combat the spread of AIDS in the heterosexual population is manifest. A necessary component of these programs, however, is a basic understanding of the specific population to which such education will be directed.
Purpose of the Study
A descriptive study presents the results
of a 31-item questionnaire surveying the attitudes, fears, and perceived risks regarding acquired immunodeficiency syndrome (AIDS) ofpatients at a freestanding maternity center located in a Washington, DC, suburb. The nonprobability, convenience sample of 200 females consists primarily of a homogenous group of white, middle- to uppermiddle-class, well-educated women. Results of the research indicate a need for an educationalprogram on AIDS designed for this population of women.
The purpose of this study is to explore and describe the perceived risks, fears, and attitudes regarding AIDS of a nurse-midwifery client population. Specifically, the population consists predominantly of white, middle- to upper-middle-class,well-educated heterosexual women, a group generally considered to be at low risk of contracting AIDS.* Despite this low-risk classification for the group, it cannot be assumed that each of the behaviors of the individual members is also low risk. Consequently, the information gathered from the study should serve to assess and then to provide for the educational needs of these women concerning this deadly disease.
Literat u re Review A search of the literature on AIDS revealed no studies that examined the attitudes, fears, and perceived risks
Accepted: November 1990
* At the time of publication, this prediction had been surpassed with the CDC report that, at the end of May 1991, the proportion of AIDS cases resulting from heterosexual contact had reached 6%. From HIV/AIDS Surveillance Report. June 1991. washington, D.C.: Centers for Disease Control.
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Such influences may also be present in the target popregarding AIDS on the part of the population of ulation of this study. women toward whom this study is aimed. Of the few studies that addressed various psychosocial aspects of AIDS among other populations, all involved either MetbodoZogy or national po11s.10-'2As with this study, the Subjects and setting attitudes, fears, and perceived risks of subjects conThe descriptive survey was conducted from August 12 cerning AIDS were e ~ a m i n e d . ~ gOther ~ - ' ~ psychosoto November 15, 1987, at a freestanding maternity cia1 factors that were explored included knowledge center located in a suburb of Washington, DC. Of the educational needs,6 belief^,^-^ behaviors,s patients at the center, only those who were completconcerns," and perceptions" regarding the AIDS ing either their first obstetric visit or their annual gynevirus. cologic examination were eligible to participate in the The studies reviewed exhibited both consistent study. Emergency patients and those who had begun and inconsistent findings and correlations concerning prenatal care before August 12, 1987, were excluded the various psychosocial aspects of AIDS that were exfrom the study. A total of 201 females were deemed amined. Knowledge level about AIDS was correlated eligible, and of this number, 200 (99.5%) completed with ethnicity,569,10 age,6.799-11 parenthood: fear, worry, the questionnaire. This group is the nonprobability, or and perception of risk.' Whites were conconvenience sample upon which all the analyses are sistently found to be more knowledgeable about AIDS based. than other ethnic g r o ~ p s . ~In~general, ~ ~ ~ . 'the ~ level of Analysis of the demographic characteristics of the knowledge regarding AIDS increased with age,6s7s9 sample revealed significant homogeneity. Ninety-four with a crest at ages 31-35 years9and 30-49 years," and of the 200 female participants were white. percent a marked trough in the over-459and 0 v e r - 5 0 ~ age ~ cateEighty-six percent were between the ages of 22 and 39 gories. Only one study examined and then reported a years, with 6.5% aged 17-21 and 7.5% aged 40-45. positive correlation between knowledge of AIDS and Likewise, 85.5% reported attaining at least some level p a r e n t h ~ o dFurthermore, .~ a negative correlation was of college education or higher. Furthermore, 80.5%of reported between knowledge of AIDS and both fear, the women were either married or living with a signifiworry, and anxietf9 and perceived risk of AIDS.' cant other; 58% had one or more children, and 45% One study found that black and Hispanic adolesof the study. Sixty-nine perwere pregnant at the time cents perceived themselves to be more susceptible to cent had partor full-time jobs, and the yearly family the AIDS virus than did white adolescents ~ u r v e y e d . ~ income for 84.5% of the women was $20,000 or more. The results of other studies concerning the perceived For 19.5% of the 200 subjects, family incomes totaled risks of adolescents were c o n t r a d i c t ~ r yIn . ~compari~~ $60,000 or more. son, several studies consistently reported that the majority of adult respondents aged 18years and older did Instrument not perceive either themselves or their acquaintances as being at risk of contracting Of those who A written questionnaire was developed by the investiexpressed concern about the risk, most were in the gators, and a pilot study was completed on 20 subjects 30-49 or 30-39 age for the purpose of assessing the clarity, readability, Blacks exhibited a higher level of inappropriate and acceptability of the questionnaire. Based on the anxiety about the transmission of AIDS than did other responses of these participants, appropriate modificagroups6 Although most of the studies that were retions were made to the questionnaire, including the viewed cited a higher level of fear, worry, and anxiety deletion of one item that duplicated data. The final about AIDS transmission among younger, adolescent 31-item questionnaire consisted of both demographic subject^,^.^.^ other studies contradict this finding.sJ1 and AIDS-related items to be answered by each Quam has stated thar the discovery in some studies of subject. more fear, worry, and anxiety among younger subjects To elicit honest and accurate responses, a substanmay have been confounded in part by marital status, tial effort was made to make the AIDS-related items as since single participants exhibited more fear about nonthreatening as possible. For example, to elicit a AIDS than those who were married.9 subject's perceived risk of AIDS, first the behaviors The literature review identified a number of variand/or situations that would place an individual in a ables, many of which appear to be interrelated, that certain risk category were described. Then, rather than significantly influence the attitudes, fears, and perrequiring subjects to identify the particular reason(s) ceived risks of individuals concerning the AIDS virus. for placing themselves at a given level of risk, partici-
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pants were asked only to report whether or not they fit into a specific risk category. A byproduct of this approach was that, by providing accurate information on AIDS within the context of the questions it asked, the questionnaire served as an educational tool in itself. The assurance of complete confidentiality and anonymity was also considered vital in obtaining forthright responses from subjects. Accordingly, the selfadministered questionnaire was presented to eligible participants as they arrived at the center for their scheduled appointments, and extra time was allotted so that the questionnaires could be completed in an unhurried, private atmosphere. The subjects were verbally instructed to complete the survey prior to their actual appointments to prevent potential bias that might arise during their clinical visits from influencing their answers. A cover letter explained the procedures to be followed by the subjects and outlined the strict measures taken to ensure confidentiality and anonymity of their responses. Furthermore, subjects who chose to undergo AIDS screening were given a randomized, unidentifiable number for laboratory purposes, and the anonymous test results were kept in a file separate from the subjects’ usual medical records. Finally, the participants were able to rate, through a specific question on the questionnaire, their perceptions of the level of confidentiality that existed at the maternity center. Method of anaZysis To analyze the survey information, the statistical computer program SAS (Statistical Analysis Software) was Figure 1. Percent o f respondentsperceiving themselves to be in or not in a high-risk category. 100
90 80 P
70
r c 5 0 e n 40 t 3 0
20
10
90 80
P
r c e n
70
63.5%
60 50 40
22.5%
4%
I
1
10
Yes
No
Not sure
Figure 2. Percent of respondents perceiving themselves to be in or not in an additional-risk category.
used. A chi-square analysis with an alpha level of 0.05 was used to assess the statistical significance of the correlations.
Findings Perceived risk Five questions assessed the respondent’s perceived risk of AIDS. The first identified the following known high-risk categories of individuals to the respondents: homosexuals and bisexuals, intravenous drug users, prostitutes, receivers of blood or blood products, and the partners of each of these categories of people (Fig. 1 ) . Respondents were then asked whether they believed themselves to be in any of these categories. More than 93%answered “no,” 2.5%answered “yes,” and 4% responded “not sure.” Respondents were then given the following statement: “In the case of AIDS, it has been suggested that when you have sex with a person, you are also exposed to that person’s previous sexual partners from the past eight years.” When asked, “As a result of this statement, do you feel that this may put you at additional risk for AIDS?” 22.5%answered “yes” and 14% answered “not sure,” with the remaining 63.5% responding “no.” Thus, 36.5%of the 200 subjects indicated that they might be at additional risk for contracting AIDS (Fig. 2). Overall, then, 25% of the respondents identified themselves as being in one or the other of these two AIDS risk categories. Immediately after this additional-risk question, the participants were asked to judge whether they
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could be included in a category of behaviors identified as low risk (Fig. 3). A low-risk behavior includes the practice of celibacy, monogamy for the previous 10 years, or the consistent use of condoms. Sixty-one percent indicated that they could be categorized in one of these low-risk groups, 29% answered that they could not, and 10% responded that they were “not sure.” Overall, then, 39% could not identify themselves as a person who practiced any of the low-risk behaviors. Another question required that the subjects rate, on a scale of 1 to 9 (1, not likely; 9, very likely), the likelihood of their having the AIDS virus at the time of the study (Fig. 4 ) . As evidenced by the 96.5%who rated their likelihood of having AIDS between 1 and 3, overall, the subjects believed it unlikely that they had the virus at the time of the study. The next question used the same scale of 1 to 9 to assess the respondent’s perception of her likelihood of contracting AIDS in the future (Fig. 5). Again, a high number (94%) rated their likelihood between 1 and 3. Thus, in general, the participants saw themselves as very unlikely to contract the AIDS virus in the future. Attitudes and fear The respondents were asked to give their opinion on the administration of testing for the AIDS virus. More than half of the subjects (59.3%) stated that testing should be offered on a routine or voluntary basis, which was defined as “each client offered and encour-
Figure 3. Percent of respondents perceiving themelves to be in or not in a low-risk
category.
P
e n t
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P
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e 6 0 r c 50
e n 40 1 3 0
20 10
80
30 20 10
0
II
P
’r
29%
Yes
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4-5
6-9
Figure i., Respondents’perceived likelihood of contracting AIDS in thefuture, on a scale of1 to 9 (1, not at all likely; 9, very likely). One percent did not respond.
80
40
2.5%
aged to get testing but allowed to say no.” However, 21.1% believed that testing should be mandatory in order to be a part of the maternity center program. Of those who urged mandatory screening, less than half (42.8%) underwent AIDS screening at the maternity center themselves. More than 13%of the respondents felt that clinicians should offer human immunodeficiency virus (HIV) testing on a case-by-case basis,
90
50
1 -
Figure 4. Respondents’ perceived like/ihood of having AIDS at the present time, on a scale of1 to 9 (1, not at all likely; 9, very likely). One percent did not respond.
90
61YO
1 1-3
100
70
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0
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e 6 0 r
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e n
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with testing offered only to those clients who appear to be at high risk or to those who request testing. The participants were asked whether they would encourage their partners to be tested for the AIDS virus, since they themselves had been offered such a test at the maternity center. More than half, 54.5%, responded negatively; only 14% indicated that they would encourage their partner to receive testing. Forty-seven (23.5%) of the 200 subjects chose to be screened for the HIV at the maternity center at the time of the study. N o correlations were found between a subject’s decision to be screened and any of the other variables studied, including the subject’s perceived risk of contracting AIDS. The participants were asked, “How much of a threat do you believe AIDS is to our society?” On a scale of 1 to 9 (1, very severe threat; 9, no threat), the responses were as follows: 84.5% between 1 and 3, 11% between 4 and 6 , and 3% between 7 and 9. Clearly, the respondents overwhelmingly considered AIDS to be a severe threat to society. Next, respondents were asked, “How fearful are you of the AIDS virus?” Again on a scale of 1 to 9 ( 1 , not fearful; 9, extremely fearful), approximately 19% gave themselves a rating between 8 and 9. Overall, 33.1% rated themselves between 6 and 9; 20.6% rated themselves at 5, and 45.3% indicated that their fear was in the range 1 to 4. These data suggest that only one-third of those responding felt somewhat fearful to extremely fearful of the AIDS virus. The next item read, “Because AIDS has no cure, some people do not want to know if they have been infected with the AIDS virus. Do you feel this way?” Seventy-four percent of the 200 respondents answered “no”; that is, they wanted to know whether they had been infected with AIDS. Eight percent agreed that they would not want to know. As mentioned, confidentiality was seen by the investigators as essential to obtaining accurate responses to the questionnaire (Fig. 6 ) . Thus, a question was included that addressed this issue. Subjects rated, on a scale of 1 to 9 (1, poorly; 9, very well), their response to the question “How do you feel that confidentiality has been handled at the maternity center?” Of those who responded, approximately 75% rated the confidentiality level as 9, with 87.8% rating it 8 to 9; 8.9% rated the level 6 to 7 , with the remaining 2.7% rating it at 5, and only one subject rating the level at 1.
100
90 80
P r c e n t
74.2%
70 60 50
40 30
20
I :
10
I
0.6% 0% 1
2
0%
0%
3
4
-
2.7% 4.8% 4.1% 5
-
13.6%
n n 6
7
8
9
Figure 6. Respondents’ rating ofconjidentiality level ofsurvey>on a scale of1 to 9 (1, confdentiality handled poorly; 9, conjidentiaiityhandled very well).
younger age group, with decreasing prevalence as age increases. The association between one’s relationship status and the perception of being at additional risk was also statistically significant (p < O.OOl), with single respondents most likely to indicate that they felt they were at additional risk. Perceiving oneself to be at additional risk was positively associated with encouraging one’s partner to be tested for the AIDS virus (p < 0.001). On the other hand, if the respondent felt that she was at low risk, she was more likely notto encourage her partner to be tested (p c 0.001).
Discussion
Significant correlations Age was associated with considering oneself to be at “additional risk’ for AIDS (p = 0.009). The perception of being at additional risk is most prevalent in the
The women who participated in this study had many characteristics in common. The majority of them were white, middle to upper middle class, married, and college educated. Although the subjects were not specifically asked to identify their sexual preferences, the study setting and demographic statistics led the investigators to assume that the sample consisted primarily of heterosexual females. The highly homogeneous nature of the sample urges caution in attempting to generalize the findings of the study to the more diverse, broader population of heterosexual females, but the findings are indicative of those with similar demographic characteristics. The data on the perceived risk of contracting AIDS indicate striking inconsistencies in regard to placing oneself in the high-risk, additional-risk, or low-risk cat-
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Although 39% of subjects were unable to identtfy themselves at low risk for AIDS, uirtually none of them reported it likely that they could bave the AIDS virus at the present time or in the future.
egory. That is, the subjects’ perceived risk of contracting AIDS ranged from 2.5% to 29%, depending on which risk question was being answered. Furthermore, when the subjects’ responses to these risk questions were compared with their responses concerning the likelihood of their having the AIDS virus at the present time or contracting it in the future, even greater inconsistencies appeared. Although 39% of the subjects were unable to identify themselves as being at low risk and 25% saw themselves as being at either high or additional risk, virtually none of them reported it likely that they had the AIDS virus at the present time or would contract it in the future. In other studies, Baussell, the Gallup National Omnibus, and Strunin and Hingson also reported that few respondents perceived themselves personally at risk of contracting the AIDS Yet, further contradicting the subjects’ perceptions on this matter in this and in these other studies, approximately 25% of the 200 subjects considered a low-risk population chose to be screened for the AIDS virus at the time of the study. These findings lead to the conclusion that this population may be experiencing a great deal of both fear and denial concerning their risk of contracting AIDS and that they may have rationalized a life-style that is at risk. Furthermore, of those who are screened and who test negative, the negative results may provide a false sense of reassurance or condone previous high-risk behaviors. Such inconsistencies, fears, denials, and possible rationalizations will have major health implications should this population ever be identified as high risk. To deal with this potential problem, it has been suggested that presenting clients with all known and probable AIDS risk factors will lead to a more accurate assessment of risk and, hopefully, provide the motivation for any necessary behavior m~dification.’~ In comparing responses concerning the threat of AIDS to society and fear of the virus, it initially appears that the denial mechanism is again influencing subjects’ perceptions. Approximately 95% responded that AIDS is a moderate to severe threat to society. Conversely, only one-third of the respondents reported that they themselves were fearful of the AIDS virus.
September/October 1391
However, the survey question concerning the threat of AIDS to society was presented to the subjects in genera1 terms; as a result, its meaning was open to interpretation. Accordingly, whether the findings on this issue are the result of a denial mechanism or the result of contrasting interpretations of the two questions is difficult to conclude without further study. The AIDS screening test was offered at the maternity center on a routine or voluntary basis, a policy with which more than half of the subjects expressed agreement. Another 21.1% of the respondents supported mandatory screening, but fewer than half of this 21.1% requested AIDS screening at the maternity center. Although it is possible that some of these subjects were screened previously at a different location, one must question whether or not a double standard is being applied by those promoting mandatory screening. Only 14% of respondents reported that they would encourage their partners to be tested for HIV, even though 39% of them were unable to include themselves in the low-risk category and 25% indicated that they were at additional risk or high risk for AIDS. One theory for why some women were reluctant to encourage their partners to be tested, even though they felt that they themselves were at risk, is that the women feared their partners’ anger or suspicion more than they feared AIDS. Another explanation is that those who see themselves at risk find it difficult to truly accept the fact that they could have the AIDS virus. Despite the discrepancy between these subjects’ assessment of their risk of having or contracting AIDS and their unwillingness to encourage their partners to be tested for HIV, it is encouraging that those who identified themselves as being in the additional-risk category were the most likely to report that they would encourage their partners to seek HIV screening. The category of additional risk was also correlated with age and marital status. Specifically, both younger and single respondents were most likely to identify themselves as being in the additional-risk category. However, as Quam discussed? caution must be exercised since the age correlation may be confounded somewhat by marital status. Although the majority of respondents reported
This population may be experiencing a great deal of both fear and denial concerning their risk of contracting AIDS, and they may have rationalized a life-style that is at risk.
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that if they had the AIDS virus, they would want to know it, 8% indicated that they would not want to know, and another 17.5% were not sure. The major concern arising out of these statistics is that if those who do not want to know continue any high-risk behaviors, the potential for spreading the AIDS virus to others is great. Finally, the subjects’ rating of the confidentiality level of the study was overwhelmingly high. Such a high rating allows greater confidence in the assumption that the responses elicited from the subjects were accurate.
limitations The study presented here was limited primarily to a homogenous group of white, middle- to upper-middle-class, well-educated women. Consequently, its findings cannot be generalized to a more diverse population of females. Yet, the research provides a unique addition to the AIDS literature by examining this otherwise unstudied population. Another limitation may be the research tool itself. As described, attempts were made to ensure complete confidentiality and anonymity, as well as to provide nonthreatening questionnaire items. However, despite such attempts, and despite a high confidentiality rating by subjects, the sensitivity of the topic of AIDS dictates some caution in assuming totally accurate responses.
Nursing Implications The study confirms that individuals from a designated low-risk population assess their risk of having or contracting AIDS in a manner that is contrary to their classification. This finding has clinical and educational implications for nurses. Clinically, it emphasizes the need for consistency in such practices as the use of universal precautions, when indicated, no matter what the patient’s supposed risk status may be. Likewise, the findings reaffirm the need to educate all clients about this deadly disease, not just those who are presumed to be at risk. The nursing profession has a great opportunity and a responsibility to provide AIDS education to Thefindings reaflrm the need to educate all clients about tbis deadly disease, not just those wbo are presumed to be at risk.
f i e attitudes and fears of tbis bitberto infrequently studied population will determine wbetber society is successful in preventing tbe spread of AIDS to yet anotber of its subgroups.
every one of its clients. Initially, however, it is beneficial to assess the needs of the population toward whom such educational programs will be directed, as this study has done. For example, the study’s findings suggest that a component addressing denial may need to be included in a program designed for the sample group of women. Such a component could assist these individuals in realistically assessing their risk of AIDS and thus could play a role in changing any at-risk behaviors they might have. In any event, further research is required to expand our knowledge of AIDS education. In particular, such research must assess which populations are to be educated about AIDS and the effectiveness of the various educational programs developed. In sum, through educational efforts, clinical practice, and research, nurses have both the opportunity and the responsibility to help prevent the further spread of this deadly virus.
Conclusioons This study contributes to the larger body of AIDS research by adding information gathered from a hitherto infrequently studied population. It represents an attempt to address a potential AIDS problem before it reaches epidemic proportions in this population of white, middle- to upper-middle-class, well-educated women. It has been predicted that the general heterosexual population will be the next group to which the AIDS virus spread^.^.'^ Their attitudes and fears will determine whether they accept or deny their chances of contracting AIDS, whether they are willing to forgo high-risk behaviors, and whether society is successful in preventing the spread of the AIDS virus to yet another of its subgroups.
Acknowledgment The authors thank Maternity Center Associates, in Bethesda, Maryland, for making this study possible.
References 1 . Caruso, B., and J. Haig. 1987.AIDS on campus: A survey of college health service priorities and policies. J Am
Coil Health. 36 :32-36.
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2. Morgan,W., and J. Curran. 1986.Acquired immunodeficiency syndrome: Current and future trends. Public Health Rep. 101(5):459-65. 3. Centers for Disease Control. 1990. Update: Acquired immunodeficiency syndrome-United States, 1989. MMWR. 39:81-86. 4. Centers for Disease Control. 1985. Recommendations for assisting in the prevention of perinatal transmission of human T-lymphotropicvirus type III-lymphadenopathy associated virus and acquired immunodeficiency syndrome. MMW?. 34:721-31. 5. DiClemente, R., C. Boyer, and E. Morales. 1988.Minorities and AIDS: Knowledge, attitudes, and misconceptions among black and Latino adolescents. Am J Public Health. 78(1)55-57. 6. Bryce, J., J. Joseph, L. Williams, K. Braceful, and R. Pope. 1987. AIDS education needs in low-prevalence areas: Surveys of the general public, Detroit blacks, and homosexual males in Michigan. Typescript. Lansing: Michigan Department of Public Health, Office of AIDS Prevention. 7. DiClemente, R., C. Boyer, and E. Morales. 1986.Adolescents and AIDS: A survey of knowledge, attitudes and beliefs about AIDS in San Francisco. Am J Public Health. 76( 12) :1443-45. 8. Strunin, L., and R. Hingson. 1987.Acquired immunodeficiency syndrome and adolescents: Knowledge, beliefs, attitudes and behaviors. Pediatrics. 79(5):825-28. 9. Quam, M. 1987. Knowledge, beliefs, and attitudes regarding AIDS: A midwest college population. Paper read at annual meeting of the American Public Health Association, New Orleans. 10. Dawson, D., M. Cynamon, and J. Fitti. 1988.AIDS knowledge and attitudes for September 1987 (provisional data from the National Health Interview Survey). Vital
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and Health Statistics of the National Center for Health Statistics no. 146. Washington, D.C. 11. Gallup National Omnibus. 1986. Conducted for the Canadian Public Health Association, Ottawa, Ontario, Canada. 12. Bausell, R., S. Damrosch, P. Parks, and K. Soeken. 1986. Public perceptions regarding the AIDS epidemic: Selected results from a national poll. AIDS Research. 2(3):253-58. 13. Glenn, P., M. McCartney, L. Nance-Spronson,and C. Yesalis. 1989. Clinical risk assessment-strategies for AIDS. J Nurse Midwifery. 34(6):352-54. 14. Holman, S. 1989. Epidemiology and transmission of HIV infection in women.]Nurse Midwifery. 34(5):23341. Address for correspondence: Pamela S.F. Glenn, CNM, MS, Ob/Gyn Department, St. Paul Ramsey Medical Center, 640 Jackson St., St. Paul, MN 55101-2595. Pamela S.F. Glenn is a certged nurse-midwqe practicing at St. Paul Ramsey Medical Center In St. Paul, Minnesota. Letitia k Nance-Spronson is a biostatistictan wtth the Department of Neurology, Johns Hopktns Unlverstty in Balttmore, Maryland. Marion McCartney is a certrfed nurse-mtdwfe and a founder of Maternity Center Assoctates, a freestandtng btrth center In Eethesda, Mtzryland. Charles E. Yesalts ts professor of health poltcy and admintstratton and exercise and sport science at Pennsylvania State Untversity In Untverstty Park, Pennsylvania.
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P A M E L A S.F. G L E N N , C N M , M S L E T I T I A E. N A N C E - S P R O N S O N , M H A MARION McCARTNEY, CNM C H A R L E S E. Y E S A L I S . S c D
Attitudes toward ALDS among a Low= Risk Group of Women
t has been said that “with the current shift in focus from high-risk groups to high-risk behaviors, the heterosexual population is identified more frequently as being at risk for exposure to the AIDS [acquired immunodeficiency syndrome] virus.”’ Likewise, it has been predicted2 that the proportion of AIDS cases resulting from heterosexual contact will increase from 1.5% in 1983 to 5% by 1991.* A recent report by the Centers for Disease Control stated that in 1989, cases of AIDS attributable to heterosexual contact had climbed to 4.4% of the total number of cases, an increase of 27% from 1988.3The same report found that the number of cases of AIDS in females in 1989 increased by 11%over the previous year.3
The Centers f o r Disease Control recently reported that in 1989, cases of AIDS attributable to heterosexual contact had increased 27%from 1988.
Thus, the need for educational programs designed to combat the spread of AIDS in the heterosexual population is manifest. A necessary component of these programs, however, is a basic understanding of the specific population to which such education will be directed.
Purpose of the Study
A descriptive study presents the results
of a 31-item questionnaire surveying the attitudes, fears, and perceived risks regarding acquired immunodeficiency syndrome (AIDS) ofpatients at a freestanding maternity center located in a Washington, DC, suburb. The nonprobability, convenience sample of 200 females consists primarily of a homogenous group of white, middle- to uppermiddle-class, well-educated women. Results of the research indicate a need for an educationalprogram on AIDS designed for this population of women.
The purpose of this study is to explore and describe the perceived risks, fears, and attitudes regarding AIDS of a nurse-midwifery client population. Specifically, the population consists predominantly of white, middle- to upper-middle-class,well-educated heterosexual women, a group generally considered to be at low risk of contracting AIDS.* Despite this low-risk classification for the group, it cannot be assumed that each of the behaviors of the individual members is also low risk. Consequently, the information gathered from the study should serve to assess and then to provide for the educational needs of these women concerning this deadly disease.
Literat u re Review A search of the literature on AIDS revealed no studies that examined the attitudes, fears, and perceived risks
Accepted: November 1990
* At the time of publication, this prediction had been surpassed with the CDC report that, at the end of May 1991, the proportion of AIDS cases resulting from heterosexual contact had reached 6%. From HIV/AIDS Surveillance Report. June 1991. washington, D.C.: Centers for Disease Control.
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Such influences may also be present in the target popregarding AIDS on the part of the population of ulation of this study. women toward whom this study is aimed. Of the few studies that addressed various psychosocial aspects of AIDS among other populations, all involved either MetbodoZogy or national po11s.10-'2As with this study, the Subjects and setting attitudes, fears, and perceived risks of subjects conThe descriptive survey was conducted from August 12 cerning AIDS were e ~ a m i n e d . ~ gOther ~ - ' ~ psychosoto November 15, 1987, at a freestanding maternity cia1 factors that were explored included knowledge center located in a suburb of Washington, DC. Of the educational needs,6 belief^,^-^ behaviors,s patients at the center, only those who were completconcerns," and perceptions" regarding the AIDS ing either their first obstetric visit or their annual gynevirus. cologic examination were eligible to participate in the The studies reviewed exhibited both consistent study. Emergency patients and those who had begun and inconsistent findings and correlations concerning prenatal care before August 12, 1987, were excluded the various psychosocial aspects of AIDS that were exfrom the study. A total of 201 females were deemed amined. Knowledge level about AIDS was correlated eligible, and of this number, 200 (99.5%) completed with ethnicity,569,10 age,6.799-11 parenthood: fear, worry, the questionnaire. This group is the nonprobability, or and perception of risk.' Whites were conconvenience sample upon which all the analyses are sistently found to be more knowledgeable about AIDS based. than other ethnic g r o ~ p s . ~In~general, ~ ~ ~ . 'the ~ level of Analysis of the demographic characteristics of the knowledge regarding AIDS increased with age,6s7s9 sample revealed significant homogeneity. Ninety-four with a crest at ages 31-35 years9and 30-49 years," and of the 200 female participants were white. percent a marked trough in the over-459and 0 v e r - 5 0 ~ age ~ cateEighty-six percent were between the ages of 22 and 39 gories. Only one study examined and then reported a years, with 6.5% aged 17-21 and 7.5% aged 40-45. positive correlation between knowledge of AIDS and Likewise, 85.5% reported attaining at least some level p a r e n t h ~ o dFurthermore, .~ a negative correlation was of college education or higher. Furthermore, 80.5%of reported between knowledge of AIDS and both fear, the women were either married or living with a signifiworry, and anxietf9 and perceived risk of AIDS.' cant other; 58% had one or more children, and 45% One study found that black and Hispanic adolesof the study. Sixty-nine perwere pregnant at the time cents perceived themselves to be more susceptible to cent had partor full-time jobs, and the yearly family the AIDS virus than did white adolescents ~ u r v e y e d . ~ income for 84.5% of the women was $20,000 or more. The results of other studies concerning the perceived For 19.5% of the 200 subjects, family incomes totaled risks of adolescents were c o n t r a d i c t ~ r yIn . ~compari~~ $60,000 or more. son, several studies consistently reported that the majority of adult respondents aged 18years and older did Instrument not perceive either themselves or their acquaintances as being at risk of contracting Of those who A written questionnaire was developed by the investiexpressed concern about the risk, most were in the gators, and a pilot study was completed on 20 subjects 30-49 or 30-39 age for the purpose of assessing the clarity, readability, Blacks exhibited a higher level of inappropriate and acceptability of the questionnaire. Based on the anxiety about the transmission of AIDS than did other responses of these participants, appropriate modificagroups6 Although most of the studies that were retions were made to the questionnaire, including the viewed cited a higher level of fear, worry, and anxiety deletion of one item that duplicated data. The final about AIDS transmission among younger, adolescent 31-item questionnaire consisted of both demographic subject^,^.^.^ other studies contradict this finding.sJ1 and AIDS-related items to be answered by each Quam has stated thar the discovery in some studies of subject. more fear, worry, and anxiety among younger subjects To elicit honest and accurate responses, a substanmay have been confounded in part by marital status, tial effort was made to make the AIDS-related items as since single participants exhibited more fear about nonthreatening as possible. For example, to elicit a AIDS than those who were married.9 subject's perceived risk of AIDS, first the behaviors The literature review identified a number of variand/or situations that would place an individual in a ables, many of which appear to be interrelated, that certain risk category were described. Then, rather than significantly influence the attitudes, fears, and perrequiring subjects to identify the particular reason(s) ceived risks of individuals concerning the AIDS virus. for placing themselves at a given level of risk, partici-
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pants were asked only to report whether or not they fit into a specific risk category. A byproduct of this approach was that, by providing accurate information on AIDS within the context of the questions it asked, the questionnaire served as an educational tool in itself. The assurance of complete confidentiality and anonymity was also considered vital in obtaining forthright responses from subjects. Accordingly, the selfadministered questionnaire was presented to eligible participants as they arrived at the center for their scheduled appointments, and extra time was allotted so that the questionnaires could be completed in an unhurried, private atmosphere. The subjects were verbally instructed to complete the survey prior to their actual appointments to prevent potential bias that might arise during their clinical visits from influencing their answers. A cover letter explained the procedures to be followed by the subjects and outlined the strict measures taken to ensure confidentiality and anonymity of their responses. Furthermore, subjects who chose to undergo AIDS screening were given a randomized, unidentifiable number for laboratory purposes, and the anonymous test results were kept in a file separate from the subjects’ usual medical records. Finally, the participants were able to rate, through a specific question on the questionnaire, their perceptions of the level of confidentiality that existed at the maternity center. Method of anaZysis To analyze the survey information, the statistical computer program SAS (Statistical Analysis Software) was Figure 1. Percent o f respondentsperceiving themselves to be in or not in a high-risk category. 100
90 80 P
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Figure 2. Percent of respondents perceiving themselves to be in or not in an additional-risk category.
used. A chi-square analysis with an alpha level of 0.05 was used to assess the statistical significance of the correlations.
Findings Perceived risk Five questions assessed the respondent’s perceived risk of AIDS. The first identified the following known high-risk categories of individuals to the respondents: homosexuals and bisexuals, intravenous drug users, prostitutes, receivers of blood or blood products, and the partners of each of these categories of people (Fig. 1 ) . Respondents were then asked whether they believed themselves to be in any of these categories. More than 93%answered “no,” 2.5%answered “yes,” and 4% responded “not sure.” Respondents were then given the following statement: “In the case of AIDS, it has been suggested that when you have sex with a person, you are also exposed to that person’s previous sexual partners from the past eight years.” When asked, “As a result of this statement, do you feel that this may put you at additional risk for AIDS?” 22.5%answered “yes” and 14% answered “not sure,” with the remaining 63.5% responding “no.” Thus, 36.5%of the 200 subjects indicated that they might be at additional risk for contracting AIDS (Fig. 2). Overall, then, 25% of the respondents identified themselves as being in one or the other of these two AIDS risk categories. Immediately after this additional-risk question, the participants were asked to judge whether they
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could be included in a category of behaviors identified as low risk (Fig. 3). A low-risk behavior includes the practice of celibacy, monogamy for the previous 10 years, or the consistent use of condoms. Sixty-one percent indicated that they could be categorized in one of these low-risk groups, 29% answered that they could not, and 10% responded that they were “not sure.” Overall, then, 39% could not identify themselves as a person who practiced any of the low-risk behaviors. Another question required that the subjects rate, on a scale of 1 to 9 (1, not likely; 9, very likely), the likelihood of their having the AIDS virus at the time of the study (Fig. 4 ) . As evidenced by the 96.5%who rated their likelihood of having AIDS between 1 and 3, overall, the subjects believed it unlikely that they had the virus at the time of the study. The next question used the same scale of 1 to 9 to assess the respondent’s perception of her likelihood of contracting AIDS in the future (Fig. 5). Again, a high number (94%) rated their likelihood between 1 and 3. Thus, in general, the participants saw themselves as very unlikely to contract the AIDS virus in the future. Attitudes and fear The respondents were asked to give their opinion on the administration of testing for the AIDS virus. More than half of the subjects (59.3%) stated that testing should be offered on a routine or voluntary basis, which was defined as “each client offered and encour-
Figure 3. Percent of respondents perceiving themelves to be in or not in a low-risk
category.
P
e n t
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Figure i., Respondents’perceived likelihood of contracting AIDS in thefuture, on a scale of1 to 9 (1, not at all likely; 9, very likely). One percent did not respond.
80
40
2.5%
aged to get testing but allowed to say no.” However, 21.1% believed that testing should be mandatory in order to be a part of the maternity center program. Of those who urged mandatory screening, less than half (42.8%) underwent AIDS screening at the maternity center themselves. More than 13%of the respondents felt that clinicians should offer human immunodeficiency virus (HIV) testing on a case-by-case basis,
90
50
1 -
Figure 4. Respondents’ perceived like/ihood of having AIDS at the present time, on a scale of1 to 9 (1, not at all likely; 9, very likely). One percent did not respond.
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with testing offered only to those clients who appear to be at high risk or to those who request testing. The participants were asked whether they would encourage their partners to be tested for the AIDS virus, since they themselves had been offered such a test at the maternity center. More than half, 54.5%, responded negatively; only 14% indicated that they would encourage their partner to receive testing. Forty-seven (23.5%) of the 200 subjects chose to be screened for the HIV at the maternity center at the time of the study. N o correlations were found between a subject’s decision to be screened and any of the other variables studied, including the subject’s perceived risk of contracting AIDS. The participants were asked, “How much of a threat do you believe AIDS is to our society?” On a scale of 1 to 9 (1, very severe threat; 9, no threat), the responses were as follows: 84.5% between 1 and 3, 11% between 4 and 6 , and 3% between 7 and 9. Clearly, the respondents overwhelmingly considered AIDS to be a severe threat to society. Next, respondents were asked, “How fearful are you of the AIDS virus?” Again on a scale of 1 to 9 ( 1 , not fearful; 9, extremely fearful), approximately 19% gave themselves a rating between 8 and 9. Overall, 33.1% rated themselves between 6 and 9; 20.6% rated themselves at 5, and 45.3% indicated that their fear was in the range 1 to 4. These data suggest that only one-third of those responding felt somewhat fearful to extremely fearful of the AIDS virus. The next item read, “Because AIDS has no cure, some people do not want to know if they have been infected with the AIDS virus. Do you feel this way?” Seventy-four percent of the 200 respondents answered “no”; that is, they wanted to know whether they had been infected with AIDS. Eight percent agreed that they would not want to know. As mentioned, confidentiality was seen by the investigators as essential to obtaining accurate responses to the questionnaire (Fig. 6 ) . Thus, a question was included that addressed this issue. Subjects rated, on a scale of 1 to 9 (1, poorly; 9, very well), their response to the question “How do you feel that confidentiality has been handled at the maternity center?” Of those who responded, approximately 75% rated the confidentiality level as 9, with 87.8% rating it 8 to 9; 8.9% rated the level 6 to 7 , with the remaining 2.7% rating it at 5, and only one subject rating the level at 1.
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7
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9
Figure 6. Respondents’ rating ofconjidentiality level ofsurvey>on a scale of1 to 9 (1, confdentiality handled poorly; 9, conjidentiaiityhandled very well).
younger age group, with decreasing prevalence as age increases. The association between one’s relationship status and the perception of being at additional risk was also statistically significant (p < O.OOl), with single respondents most likely to indicate that they felt they were at additional risk. Perceiving oneself to be at additional risk was positively associated with encouraging one’s partner to be tested for the AIDS virus (p < 0.001). On the other hand, if the respondent felt that she was at low risk, she was more likely notto encourage her partner to be tested (p c 0.001).
Discussion
Significant correlations Age was associated with considering oneself to be at “additional risk’ for AIDS (p = 0.009). The perception of being at additional risk is most prevalent in the
The women who participated in this study had many characteristics in common. The majority of them were white, middle to upper middle class, married, and college educated. Although the subjects were not specifically asked to identify their sexual preferences, the study setting and demographic statistics led the investigators to assume that the sample consisted primarily of heterosexual females. The highly homogeneous nature of the sample urges caution in attempting to generalize the findings of the study to the more diverse, broader population of heterosexual females, but the findings are indicative of those with similar demographic characteristics. The data on the perceived risk of contracting AIDS indicate striking inconsistencies in regard to placing oneself in the high-risk, additional-risk, or low-risk cat-
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Although 39% of subjects were unable to identtfy themselves at low risk for AIDS, uirtually none of them reported it likely that they could bave the AIDS virus at the present time or in the future.
egory. That is, the subjects’ perceived risk of contracting AIDS ranged from 2.5% to 29%, depending on which risk question was being answered. Furthermore, when the subjects’ responses to these risk questions were compared with their responses concerning the likelihood of their having the AIDS virus at the present time or contracting it in the future, even greater inconsistencies appeared. Although 39% of the subjects were unable to identify themselves as being at low risk and 25% saw themselves as being at either high or additional risk, virtually none of them reported it likely that they had the AIDS virus at the present time or would contract it in the future. In other studies, Baussell, the Gallup National Omnibus, and Strunin and Hingson also reported that few respondents perceived themselves personally at risk of contracting the AIDS Yet, further contradicting the subjects’ perceptions on this matter in this and in these other studies, approximately 25% of the 200 subjects considered a low-risk population chose to be screened for the AIDS virus at the time of the study. These findings lead to the conclusion that this population may be experiencing a great deal of both fear and denial concerning their risk of contracting AIDS and that they may have rationalized a life-style that is at risk. Furthermore, of those who are screened and who test negative, the negative results may provide a false sense of reassurance or condone previous high-risk behaviors. Such inconsistencies, fears, denials, and possible rationalizations will have major health implications should this population ever be identified as high risk. To deal with this potential problem, it has been suggested that presenting clients with all known and probable AIDS risk factors will lead to a more accurate assessment of risk and, hopefully, provide the motivation for any necessary behavior m~dification.’~ In comparing responses concerning the threat of AIDS to society and fear of the virus, it initially appears that the denial mechanism is again influencing subjects’ perceptions. Approximately 95% responded that AIDS is a moderate to severe threat to society. Conversely, only one-third of the respondents reported that they themselves were fearful of the AIDS virus.
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However, the survey question concerning the threat of AIDS to society was presented to the subjects in genera1 terms; as a result, its meaning was open to interpretation. Accordingly, whether the findings on this issue are the result of a denial mechanism or the result of contrasting interpretations of the two questions is difficult to conclude without further study. The AIDS screening test was offered at the maternity center on a routine or voluntary basis, a policy with which more than half of the subjects expressed agreement. Another 21.1% of the respondents supported mandatory screening, but fewer than half of this 21.1% requested AIDS screening at the maternity center. Although it is possible that some of these subjects were screened previously at a different location, one must question whether or not a double standard is being applied by those promoting mandatory screening. Only 14% of respondents reported that they would encourage their partners to be tested for HIV, even though 39% of them were unable to include themselves in the low-risk category and 25% indicated that they were at additional risk or high risk for AIDS. One theory for why some women were reluctant to encourage their partners to be tested, even though they felt that they themselves were at risk, is that the women feared their partners’ anger or suspicion more than they feared AIDS. Another explanation is that those who see themselves at risk find it difficult to truly accept the fact that they could have the AIDS virus. Despite the discrepancy between these subjects’ assessment of their risk of having or contracting AIDS and their unwillingness to encourage their partners to be tested for HIV, it is encouraging that those who identified themselves as being in the additional-risk category were the most likely to report that they would encourage their partners to seek HIV screening. The category of additional risk was also correlated with age and marital status. Specifically, both younger and single respondents were most likely to identify themselves as being in the additional-risk category. However, as Quam discussed? caution must be exercised since the age correlation may be confounded somewhat by marital status. Although the majority of respondents reported
This population may be experiencing a great deal of both fear and denial concerning their risk of contracting AIDS, and they may have rationalized a life-style that is at risk.
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that if they had the AIDS virus, they would want to know it, 8% indicated that they would not want to know, and another 17.5% were not sure. The major concern arising out of these statistics is that if those who do not want to know continue any high-risk behaviors, the potential for spreading the AIDS virus to others is great. Finally, the subjects’ rating of the confidentiality level of the study was overwhelmingly high. Such a high rating allows greater confidence in the assumption that the responses elicited from the subjects were accurate.
limitations The study presented here was limited primarily to a homogenous group of white, middle- to upper-middle-class, well-educated women. Consequently, its findings cannot be generalized to a more diverse population of females. Yet, the research provides a unique addition to the AIDS literature by examining this otherwise unstudied population. Another limitation may be the research tool itself. As described, attempts were made to ensure complete confidentiality and anonymity, as well as to provide nonthreatening questionnaire items. However, despite such attempts, and despite a high confidentiality rating by subjects, the sensitivity of the topic of AIDS dictates some caution in assuming totally accurate responses.
Nursing Implications The study confirms that individuals from a designated low-risk population assess their risk of having or contracting AIDS in a manner that is contrary to their classification. This finding has clinical and educational implications for nurses. Clinically, it emphasizes the need for consistency in such practices as the use of universal precautions, when indicated, no matter what the patient’s supposed risk status may be. Likewise, the findings reaffirm the need to educate all clients about this deadly disease, not just those who are presumed to be at risk. The nursing profession has a great opportunity and a responsibility to provide AIDS education to Thefindings reaflrm the need to educate all clients about tbis deadly disease, not just those wbo are presumed to be at risk.
f i e attitudes and fears of tbis bitberto infrequently studied population will determine wbetber society is successful in preventing tbe spread of AIDS to yet anotber of its subgroups.
every one of its clients. Initially, however, it is beneficial to assess the needs of the population toward whom such educational programs will be directed, as this study has done. For example, the study’s findings suggest that a component addressing denial may need to be included in a program designed for the sample group of women. Such a component could assist these individuals in realistically assessing their risk of AIDS and thus could play a role in changing any at-risk behaviors they might have. In any event, further research is required to expand our knowledge of AIDS education. In particular, such research must assess which populations are to be educated about AIDS and the effectiveness of the various educational programs developed. In sum, through educational efforts, clinical practice, and research, nurses have both the opportunity and the responsibility to help prevent the further spread of this deadly virus.
Conclusioons This study contributes to the larger body of AIDS research by adding information gathered from a hitherto infrequently studied population. It represents an attempt to address a potential AIDS problem before it reaches epidemic proportions in this population of white, middle- to upper-middle-class, well-educated women. It has been predicted that the general heterosexual population will be the next group to which the AIDS virus spread^.^.'^ Their attitudes and fears will determine whether they accept or deny their chances of contracting AIDS, whether they are willing to forgo high-risk behaviors, and whether society is successful in preventing the spread of the AIDS virus to yet another of its subgroups.
Acknowledgment The authors thank Maternity Center Associates, in Bethesda, Maryland, for making this study possible.
References 1 . Caruso, B., and J. Haig. 1987.AIDS on campus: A survey of college health service priorities and policies. J Am
Coil Health. 36 :32-36.
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2. Morgan,W., and J. Curran. 1986.Acquired immunodeficiency syndrome: Current and future trends. Public Health Rep. 101(5):459-65. 3. Centers for Disease Control. 1990. Update: Acquired immunodeficiency syndrome-United States, 1989. MMWR. 39:81-86. 4. Centers for Disease Control. 1985. Recommendations for assisting in the prevention of perinatal transmission of human T-lymphotropicvirus type III-lymphadenopathy associated virus and acquired immunodeficiency syndrome. MMW?. 34:721-31. 5. DiClemente, R., C. Boyer, and E. Morales. 1988.Minorities and AIDS: Knowledge, attitudes, and misconceptions among black and Latino adolescents. Am J Public Health. 78(1)55-57. 6. Bryce, J., J. Joseph, L. Williams, K. Braceful, and R. Pope. 1987. AIDS education needs in low-prevalence areas: Surveys of the general public, Detroit blacks, and homosexual males in Michigan. Typescript. Lansing: Michigan Department of Public Health, Office of AIDS Prevention. 7. DiClemente, R., C. Boyer, and E. Morales. 1986.Adolescents and AIDS: A survey of knowledge, attitudes and beliefs about AIDS in San Francisco. Am J Public Health. 76( 12) :1443-45. 8. Strunin, L., and R. Hingson. 1987.Acquired immunodeficiency syndrome and adolescents: Knowledge, beliefs, attitudes and behaviors. Pediatrics. 79(5):825-28. 9. Quam, M. 1987. Knowledge, beliefs, and attitudes regarding AIDS: A midwest college population. Paper read at annual meeting of the American Public Health Association, New Orleans. 10. Dawson, D., M. Cynamon, and J. Fitti. 1988.AIDS knowledge and attitudes for September 1987 (provisional data from the National Health Interview Survey). Vital
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and Health Statistics of the National Center for Health Statistics no. 146. Washington, D.C. 11. Gallup National Omnibus. 1986. Conducted for the Canadian Public Health Association, Ottawa, Ontario, Canada. 12. Bausell, R., S. Damrosch, P. Parks, and K. Soeken. 1986. Public perceptions regarding the AIDS epidemic: Selected results from a national poll. AIDS Research. 2(3):253-58. 13. Glenn, P., M. McCartney, L. Nance-Spronson,and C. Yesalis. 1989. Clinical risk assessment-strategies for AIDS. J Nurse Midwifery. 34(6):352-54. 14. Holman, S. 1989. Epidemiology and transmission of HIV infection in women.]Nurse Midwifery. 34(5):23341. Address for correspondence: Pamela S.F. Glenn, CNM, MS, Ob/Gyn Department, St. Paul Ramsey Medical Center, 640 Jackson St., St. Paul, MN 55101-2595. Pamela S.F. Glenn is a certged nurse-midwqe practicing at St. Paul Ramsey Medical Center In St. Paul, Minnesota. Letitia k Nance-Spronson is a biostatistictan wtth the Department of Neurology, Johns Hopktns Unlverstty in Balttmore, Maryland. Marion McCartney is a certrfed nurse-mtdwfe and a founder of Maternity Center Assoctates, a freestandtng btrth center In Eethesda, Mtzryland. Charles E. Yesalts ts professor of health poltcy and admintstratton and exercise and sport science at Pennsylvania State Untversity In Untverstty Park, Pennsylvania.
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