Ethical, Social and Legal Implications of DisclosurePrior to beginning work on this discussion, be sure to read the required articles for this week. .You are a consulting psychologist for a local clin
2011; 33: e50–e56 WEB PAPER The ethics of HIV testing and disclosure for healthcare professionals: What do our future doctors think? JULIE M. AULTMAN 1& NICOLE J. BORGES 2 1Northeastern Ohio Universities College of Medicine, USA, 2Wright State University Boonshoft School of Medicine, USA Abstract Aim: This study examined future medical professionals attitudes and beliefs regarding mandatory human immunodeficiency virus (HIV) testing and disclosure. Method: A total of 54 US medical students were interviewed regarding mandatory testing and disclosure of HIV status for both patient and health care professional populations. Interviews were qualitatively analyzed using thematic analysis by the first author and verified by the second author. Results: Medical students considered a variety of perspectives, even placing themselves in the shoes of their patients or imagining themselves as a healthcare professional with HIV. Mixed opinions were presented regarding the importance of HIV testing for students coupled with a fear about school administration regarding HIV positive test results and the outcome of a students career. Third- and fourth-year medical students felt that there should be no obligation to disclose ones HIV status to patients, colleagues, or employers. However, most of these students did feel that patients had an obligation to disclose their HIV status to healthcare professionals. Conclusion: This study gives medical educators a glimpse into what our future doctors think about HIV testing and disclosure, and how difficult it is for them to recognize that they can be patients too, as they are conflicted by professional and personal values. Introduction The overall aim of this qualitative study is to gain a deeper understanding of future doctors attitudes and beliefs regarding mandatory human immunodeficiency virus (HIV) testing and disclosure, and to explore current medical students personal biases and stigmas surrounding HIV testing and disclosure. Present and future doctors may face the challenges of having to not only request that patients disclose their HIV status, but also to decide whether to report ones own HIV status to patients, colleagues, and/or employing healthcare institutions. By examining and identifying some of the beliefs and attitudes surrounding such dilemmas, we believe this information can be of help to medical educators as they work with medical students and their clinical preceptors to resolve many of the social and ethical problems associated with the stigma of HIV disclosure, while improving the overall health of individuals and communities. In addition to the presentation and analysis of our data, we provide curriculum recommendations for ethics education for HIV testing and disclosure for medical students. First, we will provide descriptive background infor- mation on HIV testing and disclosure. HIV testing In the United States, there are several private and public HIV testing sites including free-standing clinics, hospitals, state Practice points . Present and future healthcare professionals may face the challenges of having to not only request that patients disclose their HIV status, but also to decide whether to report ones own HIV status to patients, colleagues, and/ or employing healthcare institutions. . Given the lack of knowledge about HIV testing, and the problems with anonymity, patients and HCWs alike, even when knowledgeable in HIV treatment and pre- vention, are often reluctant to get tested for HIV out of fear that positive test results will affect reputations, employment status and insurance benefits. . Differences were noted among pre-clinical students (first- and second-year students) and clinical students (third- and fourth-year students who have been fully exposed to patient care) with respect to the duty to patient care versus duty to oneself. . By examining and identifying some of the beliefs and attitudes surrounding such dilemmas, this information can be of help to medical educators as they work with medical students and their clinical preceptors to resolve many of the social and ethical problems associated with the stigma of HIV disclosure, while improving the overall health of individuals and communities. Correspondence: J. M. Aultman, Department of Behavioral and Community Health Sciences, Northeastern Ohio Universities College of Medicine and Pharmacy, 4209 State Route 44, PO Box 95, Rootstown, OH 44272-0095, USA. Tel: 330-325-6113; fax: 330-325-5911; email:[email protected] e50 ISSN 0142–159X print/ISSN 1466–187X online/11/010050–7 2011 Informa UK Ltd. DOI: 10.3109/0142159X.2011.530311 health departments, and clinician offices. Every state, along with Guam, Puerto Rico, and the US Virgin Islands offers confidential testing, where a person’s name is recorded with test results, and 45 states including Guam and Puerto Rico, offer anonymous testing, where no name is used or connected to test results (Center for Disease Control 2005). In reporting cases of HIV, almost every state uses names. Five states use name-to-code reporting and eight states only use codes. While it is important to test and report individuals with HIV to better understand the spread of the disease, to develop better safety and preventative measures, and to deliver needed healthcare to those who are afflicted, there are several ethical concerns about the procedures for testing and reporting. Globally, many efforts have been made to develop surveillance and reporting programs. For example, in 1999, a European HIV reporting system including 39 countries of the World Health Organization (WHO) European Region was developed for AIDS reporting. Persons who test positive are identified in various ways (e.g., names, codes/identification numbers) and reported by clinicians and/or laboratory personnel depending on the regulations of individual countries. D’Amelio et al. revealed that 27% of the 121 countries evaluated have legislative measures in place mandating HIV testing for vulnerable populations (e.g., commercial sex workers, men who have sex with men, injecting drug users; D’Amelio et al. 2001; Li et al. 2007). Worldwide, many individuals do not know the differences between anonymous and confidential testing, 1or if they are aware of mandatory testing and reporting programs, they may refuse to get tested, realizing with a positive result their names or identifying information may be reported. For those individuals who are living in states that do not give them the option for anonymity, they too are less likely to get tested. Recently, recommendations by the Center for Disease Control (CDC 2006) suggest that all adults and adolescents (ages 13–64) should be given voluntary, automatic, and routine HIV tests upon entering a healthcare facility so as to normalize HIV screening as a routine part of medical care. Marcia Angell argues there is a need for HIV testing to become more routine (Angell 1991). Using an ‘‘opt- out’’ approach, individuals may have the opportunity to decline testing, but healthcare workers (HCWs) are obligated to provide basic information about HIV, including what positive and negative test results mean. Although these recommendations may help to normalize the HIV screening process, there may be no options for anonymity, which may persuade individuals to opt-out, or even forgo medical attention altogether out of fear of being tested without prior consent. Given the lack of knowledge about HIV testing, and the problems with anonymity, patients and HCWs alike, even when knowledgeable in HIV treatment and prevention, are often reluctant to get tested for HIV out of fear that positive test results will affect reputations, employment status and insur- ance benefits. Although previous studies have critically eval- uated both patients’ and HCWs’ perspectives regarding HIV testing and disclosure (see, for example, Dixon-Mueller 2007; Galletly et al. 2008; Kagan et al. 2008; Tesoriero et al. 2008), there are few recent studies examining medical students’ perspectives (see e.g., Evans et al. 1993). HIV disclosure When tackling the issue of HIV disclosure, most studies focus on whether patients have a duty to disclose their HIV status to their partners and to healthcare professionals so as to acquire needed therapies and treatments, as well as to protect healthcare professionals from even the slightest possible exposure. Many critics conclude that patients do have a duty to disclose their HIV status to their partners, to anyone who may be susceptible to HIV transmission, or to those profes- sionals who are obligated to provide care and treatment. Under this popular line of reasoning, supported by the CDC, the American Medical Association, among other health orga- nizations, a public health ethic appears to take precedent over individual freedoms and the right to privacy. However, when tackling the issue as to whether HCWs also have a duty to disclose their HIV status to their patients (Perry et al. 2006), there is little consensus as to whether disclosure is valuable, especially given the low probability of transmission. In 1991, CDC recommended that infected HCWs with HIV or Hepatitis B should not perform exposure prone procedures unless they have ‘‘sought council from an expert review panel and [have] been advised under what circumstances, if any, they may continue to perform these procedures.’’ The CDC defined an exposure-prone procedureto include ‘‘digital palpitation of a needle tip in a body cavity or the simultaneous presence of the health care worker’s fingers and a needle or other sharp instrument or object in a poorly visualized anatomic site.’’ And, even if the panels permit them to practice, it is recommended that HCWs must still inform patients of their serologic status (Gostin 2000). The American Medical Association’s policy on HIV disclosure reads, ‘‘HIV infected physicians should disclose their HIV seropositivity to a public health officer or a local review committee, and should refrain from doing procedures that pose a significant risk of HIV transmission, or perform those procedures only with the consent of the patient and the permission of the local review committee.’’ Furthermore, ‘‘A physician who has HIV disease or who is seropositive should consult colleagues as to which activities the physician can pursue without creating a risk to patients’’ (Blumenreich 1993). Marcia Angell in ‘‘A Dual Approach to the AIDS Epidemic,’’ wrote that patients have a right to know whether a doctor or nurse who performs invasive procedures is infected with HIV. Infected HCWs should refrain from invasive procedures, or should expect to have reasonable alternative work (Blumenreich 1993). Nevertheless, the 1995 Clinton adminis- tration instructed CDC to review its guidelines that arbitrarily restrict HIV infected HCWs, which possibly lead to discrimination. Critics, such as American Law Professor, Gostin, have proposed new national policies, emphasizing patient safety by ensuring that infection control procedures are systematically implemented in healthcare settings, which would focus on ‘‘safer systems of practice rather than excluding and stigma- tizing infected healthcare workers’’ (Gostin 2000). Furthermore, Gostin argues that while a physician may choose to put the patient first by disclosing his or her status, the law should not require HCWs to disclose their HIV status, since it is an invasion of the privacy of the HCW, and a The ethics of HIV testing and disclosure e51 possible professional detriment to the therapeutic relationship following such an emotional and unsettling conversation with patients. That is, since the HIV infected HCW is also a patient, disclosure may be embarrassing and damaging to one’s professional reputation. Besides the fear of discrimination and the view that disclosure is an invasion of privacy, Gostin and others believe that since the risk of HIV transmission from HCW to patient is too low to meet the legal standard for disclosure, informed consent guidelines and laws should not require HIV infected HCWs to disclose their status to patients. But if disclosure may be embarrassing and damaging to a HCWs medical career or transmission is too low to meet the legal standard for disclosure, it would seem as though patients, just as HCWs, should not be required to disclose their HIV status when seeking non-invasive care, which may not be relevant to the treatment and monitoring of HIV. Nonetheless, healthcare professionals purport, simply for preventing harm to self and other, the HIV status of patients should be known regardless of the level of harm in diagnosing, monitoring, or treating patients for related and non-related conditions and preventative care. In the following study, these ethical issues are tackled by our medical student-participants – our future doctors, whose perspectives regarding HIV testing and disclosure for both patients and HCWs give us insight into their critical thoughts and ethical decision-making regarding personal and patient care, and whether guidelines such as those created by the CDC will be followed, or ignored, by our future physicians whether they practice nationally or internationally with different guidelines and laws. Methods During 2006–2007, a total of nine focus groups, containing 54 volunteer student-participants (34 females and 20 males), ranging in ages 18–26, from two, four-year medical schools in the United States, were interviewed by the investigators of this qualitative study. Both medical institutions have an equal ratio of males and females enrolled (50 : 50); however, there is an unexplainable disproportionate number of female students who volunteered at each level of their medical education (years 1–4). All medical students were invited to participate via email invitations and in-person classroom announcements, both of which included an informational sheet describing the study and role of voluntary participants (e.g., students may freely accept or decline participating in the study, any student who participates may leave the study at any point). Full institutional review board (IRB) approval was obtained prior to the start of the study. Six focus groups, containing 30 first- and second-year students (19 females and 11 males) were inter- viewed during their non-clinical training at their respective medical schools. Three focus groups, containing 24 third- and fourth-year medical students (15 females and 9 males), were interviewed during their clinical training at their respective medical schools, with the exception of three, third-year medical students (3 males) who were interviewed during a psychiatry clinical rotation at a local hospital. All IRB guide- lines and ethical procedures were followed (i.e., informed consent). All student-participants were asked a pre-establishedset of general, open-ended questions regarding mandatory testing and disclosure of HIV status for both patient and health care professional populations. The open-endedness of these questions, commonly used in qualitative research, prompted students to verbalize their interpretations of concepts (e.g., ‘‘compulsory’’ or ‘‘mandatory’’) and freely give their opinions on difficult, ethical and professional issues, which enabled the investigators to gain data with a range of attitudes and beliefs. The pre-established, general questions used in the recorded interviews are as follows: (1) Do you think medical students should be tested for HIV? How about physicians? Other healthcare professionals? (2) Should HIV testing be voluntary or mandatory? Why or why not? (3) Do you think that patients should disclose their HIV status to their physician? (4) Are there any circumstances under which a patient should not disclose this information about their health status? (5) If a physician has HIV, do you think he/she should disclose this to his/her patients? Please explain why or why not. These pre-established questions comprise the first part of this study; a separate set of questions focusing on current medical students’ perspective on and use of universal precautions comprise the second part of the study and findings are reported in a separate paper titled ‘‘The ethical and pedagog- ical effects of modeling ‘not-so-universal’ precautions’’. Interviews for the first part of this study were conducted for 30–45 minutes, while focus group interviews for the entire project lasted 60–75 minutes. Investigators used a hand-held, digital audio recorder to record all interviews. Project inves- tigators took hand-written notes during each focus group, alerting them to significant points and patterns of experiences, beliefs, and attitudes. All recorded interviews were transcribed. Names and other identifiers that were verbalized by students during the focus group sessions were not transcribed. Transcripts were qualitatively evaluated by the project inves- tigators individually and then collectively to ensure that emerging themes in the data were objectively identified and analyzed using thematic data analysis, whereby repetitive themes emerged from students’ responses and meaning units were recorded and coded. The project investigators included the authors of this article, both of whom also conducted the focus groups at their respective institutions; the first author analyzed the data, and the second author verified the analysis. Data from students’ answers (from the above questions and discussion that followed) were divided into two significant categories: HIV testing and HIV disclosure. Results In general, there were no identifiable differences in the reports given by medical student-participants from the two medical schools. In addition, there were no identifiable differences in responses among males and females. However, there were significant differences among pre-clinical students (first- and J. M. Aultman & N. J. Borges e52 second-year students) and clinical students (third- and fourth- year students who have been fully exposed to patient care) with respect to the duty to patient care versus duty to oneself. Although most students expressed their personal opinions, many students provided insightful, constructive, well-sup- ported arguments surrounding HIV testing and disclosure, often placing themselves in the shoes of their patients or reflectively thinking on what it would be like to be a physician with HIV. The focus groups conducted were useful not only for the purposes of this study, but also for students’ medical education by giving them an opportunity to discuss and reflect upon a controversial topic in medicine and public health. Specific results from this study are divided into two primary sections, ‘‘HIV testing’’ and ‘‘HIV disclosure,’’ along with relevant sub-sections. HIV testing Do you think medical students should be tested for HIV? How about physicians? Other healthcare professionals? In response to the first focus group question, first- and second- year students at both medical schools reported that testing can reduce the social stigma associated with HIV; by having every student experience the testing procedures from ‘‘a patient’s perspective’’, along with a formal education about HIV from clinical, psychological, and social perspectives, the stigma could be reduced and students would be better informed to help their patients and themselves in the prevention and treatment of HIV. The majority of students whosupportedHIV testing in medical school (or when they became licensed physicians) felt that testing for HIV is an important step toward physically and emotionally caring for themselves and their patients. They also recognized that attitudes and beliefs may positively change in ways that alleviate current stigma as HIV screening increases or becomes a normalized practice. However, not all students supported HIV testing for medical students and/or healthcare professionals. A total of nine first- and second-year students at both medical schools feared the consequences of the HIV tests. Their greatest fear was that of the medical school or administration finding out about any risk factors (drug use0 or positive test results, which, they believe, would ruin students’ future medical careers. They expressed they would not be valued or accepted as an HIV professional, which interestingly, provoked students to think about what patients may feel and think with respect to their own professional lives. Students from both medical schools feared their privacy would not be protected and that positive results would show up on their permanent records. One male first-year student explained that he would not want to get tested for incurable STDs ‘‘because of the possibility of the school finding out.’’ Other students reported that because the transmission rate was so small, and universal precautions were in place, there would be no need to get tested. Twelve students at each stage in the four-year medical school curriculum explicitly argued that only those who are at risk for HIV should be tested, but that testing should be voluntary regardless of the risks to patients and colleagues. Students from both medical schools (approxi- mately 75%, or 40 out of 54 clinical and non-clinical) reportedthat if healthcare professionals were tested positive for HIV, negative consequences, such as lawsuits, loss of medical licenses, and limited patient interaction, could occur. Rather than directly answering the focus group question, third-year students at both medical schools were inquisitive and asked about the benefits of knowing the results of an HIV test as it relates to the safety and protection of others. After re-directing their questions and answers (when dialogue got ‘‘off-track’’) by asking how they felt about being tested as medical students, these third-year students felt that tests should be given to healthcare professionals only if there is a significant transmis- sion rate from physician to patient. Two fourth-year students at one medical school added that ‘‘testing is expensive’’ and some people, especially medical students, may not be able to pay for the tests. The availability and accessibility of medical resources needed to test medical students and healthcare professionals alike was a general concern among the fourth- year students, as well as how information gained from the tests is going to be used (e.g., will information hurt your potential to get insurance). Overall, there was little concern regarding the possibilities of transmission of HIV from physician to patient. Mandatory testing ShouldHIVtesting be voluntary or mandatory? Why or why not? It was duly noted among first through third-year medical students at both institutions that the stigma becomes reduced when testing is mandatory. First-year students at one medical school indicated that mandatory testing may help more people get treatment. A first-year student at the second medical school indicated that ‘‘if we are not disclosing information about ourselves then I don’t think we can ask our patients to provide the information – no double standard.’’ Another student reported, ‘‘I think I would lean towards HIV testing be voluntary instead of mandatory. I really value having individ- ual rights.’’ However, another first-year student stated, ‘‘I would say mandatory. It’s just like…like our pap smears and we test for that annually, and it’s not stigmatized. I don’t see why we couldn’t do the same thing with HIV. Encourage women and men to get their annual HIV test if they, or you know, at least every few years…’’ Second-year students generally thought that so long as laws (or guidelines) were in place to protect discrimination, healthcare professionals and students should be mandatorily tested. A female second-year student, echoing the same sentiment, suggested that testing be anonymous and confi- dential if it were to be mandatory. Another second-year student felt that one would be more likely to pay attention [to universal precautions] if a person’s HIV status were known. While first- and second-year students from both medical schools indicated the stigma would be greatly reduced with mandatory testing, third- and fourth-year students felt that discrimination would occur and the stigma would continue to exist, even though ‘‘HIV is no longer a death sentence.’’ More than half of students (63%, or 34 out of 54 clinical and non-clinical) interviewed at both medical schools explicitly argued that individual rights are critical. If tests were manda- tory, the right to privacy should be upheld to protect the The ethics of HIV testing and disclosure e53 student or healthcare professional from negative conse- quences, such as employment and insurance discrimination. These students also indicated that mandatory testing would be a waste of resources, since it is a common belief among students and healthcare professionals that ‘‘we do not typically engage in risky behaviors, such as unprotected sex, or fail to use universal precautions’’. Patient disclosure Do you think that patients should disclose their HIV status to their physician? Are there any circumstances under which a patient should not disclose this information about their health status? We found that first- and second-year students (approximately 73%, or 22 out of 30 non-clinical students) expressed that patients should disclose their HIV status to their physicians in order to educate oneself and to prevent the possibility of a misdiagnosis or wrong treatment regimen. A first-year student at one medical school indicated that HIV testing is a mandatory practice within the US military, so he has to get tested each year that he is enrolled with the military. However, many first- and second-year students indicated that because of the potential for discrimination, patients should not have to disclose their HIV status. One first-year student believed that it is the physician’s responsibility topreventthe disease. First- year students from both medical schools suggested that if a physician or healthcare professional does not have to disclose their HIV status to the patient, then the patient should not have to disclose his or her status. The general consensus among third- and fourth-year students at both medical schools is for patients to disclose their HIV status in order for healthcare professionals to properly treat their patients and for properly protecting themselves when working with HIV infected patients. Both groups of students recognized that the stigma associated with HIV would still exist regardless of patient disclosure. Most third- and fourth-year students (79%, or 19 out of 24 clinical students) articulated how transparency about one’s disease and disease-related behaviors, or disclosure specifically, is an important patient duty; it is the patient’s duty to protect the healthcare professional and to seek and adhere to treatment. Physician disclosure If a physician has HIV, do you think he/she should disclose this to his/her patients? Please explain why or why not. First-year students at one medical school felt that if there is a risk, then the physician should disclose his or her HIV status. First- and second-year students at both medical schools believed that it is up to the physician to disclose. One first- year student at another medical school exclaimed that I am ‘‘too shocked even to imagine’’ this could happen to a physician. Another first-year student believed that so long a physician can practice medicine, disclosing such personal information to a patient is acceptable. A third student believed that disclosure should depend on the specialty of the profession. A male second-year student at one medicalschool ‘‘would feel guilty’’ if he did not disclose his HIV status to patients. Those first- and second-year students who believe that physicians should not disclose their HIV status to patients explained that ‘‘the patient is not caring for the doctor,’’ or that it is ‘‘not professional to disclose personal things.’’ Some first- and second-year students indicated that due to the potential loss of clients, a physician should not disclose his or her HIV status. A second-year student stated ‘‘if you are an HIV surgeon you wouldn’t be making the money because you would be limited to only surgeries that involve only HIV patients.’’ One third-year student suggested that physicians disclose their status in order to send the message to patients that they too need to take precautions. Another third-year student reported ‘‘We need to learn personal responsibility not just with universal precautions but with whatever status we have.’’ A fourth-year student at one medical school placed himself in the shoes of his patients and reported, ‘‘If I was a patient, I would want to know no matter what kind of doctor [was treating me].’’ Six students questioned why even discuss HIV as a threat, since the threat is so slim and prophylaxis is available. Knowing hepatitis was a greater threat, these students could not understand why HIV is still an issue. Three out of 10 fourth-year medical students believe the patient has a right to know. The majority of third- and fourth- year students believe that disclosure will not help the healthcare professional or his or her patients, since the risk of transmission is very slim. Discussion In this study, we explored how medical students feel about HIV testing and disclosure, and sought to understand some of the dilemmas they may face as future healthcare professionals. Due to the qualitative nature of this study (i.e., using open- ended questions in a focus group format), our medical student- participants considered a variety of perspectives, even placing themselves in the shoes of their patients or imagining themselves as a healthcare professional with HIV. Regarding duty to patients versus duty to oneself, when placed in the physician’s shoes, third- and fourth-year medical students consider the consequences (to themselves) more than patient care, but emphasized patient obligations and responsibilities in being transparent about their disease and disease-related lifestyles and behaviors. First- and second-year students emphasized the importance of testing to provide better care to patients; they placed themselves in their patient’s shoes, and were more empathetic to the emotional and social needs of patients compared to the third- and fourth-year students. The investigators attribute this difference to the lack of clinical training among first- and second-year students, who are idealistic in providing good care to patients and have not (yet) developed jaded or cynical attitudes, which we witness in more clinically-oriented students, interns, and residents. Also, third- and fourth-year students generally have more exposure to the business and legal practices related to medicine, and confront justice issues such as resource allocation and avail- ability (one reason why these students may have considered the cost of compulsory testing). J. M. Aultman & N. J. Borges e54 Some students describe their unresolved conflicts between their personal freedoms and professional obligations. For example, medical student-participants, in identifying one of the core ethical dilemmas of HIV testing and disclosure, report that anonymity is important in the preservation of privacy and personal freedom, but question how these values should be balanced against the greater good of society. These ethical issues are tackled by our medical student-participants – our future doctors, whose perspectives regarding HIV testing and disclosure for both patients and HCWs give us insight into their critical thoughts and ethical decision-making regarding per- sonal and patient care, and whether guidelines such as those created by the CDC will be followed, or ignored, by our future physicians. Mixed opinions were presented regarding the importance of HIV testing for students coupled with a fear about school administration regarding HIV positive test results and the outcome of a student’s career. Regarding HIV disclosure, some of our medical student- participants recalled the case of Dr. David J. Acer, an American dentist who was believed to have infected his patients with HIV in the late 1980s, but immediately dismissed this case, since accidental transmission of HIV from doctor to patient was never proven (Tuboku-Metzger et al. 2005). Given the lack of evidence showing a risk of transmission from a HCW to a patient, our third- and fourth-year medical students felt that because the risk was so slim, there should be no obligation to disclose one’s HIV status to patients, colleagues, or employers. However, most of these students did feel that patients had an obligation to disclose their HIV status to healthcare profes- sionals due to a greater risk of transmission. Many physicians, in general, feel the most essential thing in life is to continue practicing medicine and that disclosing their HIV status would have negative outcomes, including perma- nent loss of employment (Gerberding 1996; Fost 2000; Gostin 2000, 2002; LeBlanc 2002; Weiss et al. 2005). Based on our collected data, many of the medical students interviewed were also afraid of the possible negative outcomes for disclosing such a highly stigmatized disease. However, some students, especially those in the early stages of their medical training, thought that some of these negative outcomes could be prevented if medical students are tested before making career decisions that could affect themselves and their future patients (e.g., choosing to practice psychiatry instead of surgery). A few medical student-participants thought that HIV disclosure could benefit the therapeutic relationship, others thought patients should not be privy to HCWs personal information, but that employers should be made aware so as to monitor safety practices. Some physicians, who have disclosed their HIV status to their department chairs or others in authoritative positions, felt a sense of relief and were able to practice medicine without stigmatization and discrimination, and with- out affecting patient care. For example, one Chicago psychi- atrist explained, ‘‘I felt that though completely asymptomatic, informing my department heads that I was HIV sero-positive was the only way to keep work related stress at more manageable levels…I only share the information about my being HIVþduring the course of treatment when a patient clearly needs the example of a role model and slow progressorliving productively with HIV to provide a contrast to their hopelessness regarding their own diagnosis.’’ (Shernoff 1996). In closing, this study helps medical educators understand students’ mindset, opinions, and beliefs about HIV testing and disclosure. For those medical schools who already have this topic integrated into their ethics curriculum, their faculty may want to compare and contrast the goals and objectives for their lectures and courses with the depth and breadth of perspec- tives shared by students in this study. For schools where this is not currently an ethics topic, we encourage their faculty to derive innovative methods for exploring students thinking about and discussing these issues, especially the effects of HIV on the healthcare professional as patient. Learning opportu- nities should be provided to medical students across the curriculum to address the dilemmas regarding HIV testing and disclosure as it is important to self-care of physicians, patient care, and to the practice of medicine. It is important that medical educators create safe forums for students to discuss their perspectives, feelings, and attitudes surrounding HIV testing and disclosure, and to provide up-to-date information regarding HIV transmission and rules governing when and how to report possible transmission (e.g., needle sticks). Furthermore, medical education should recognize the need to teach students about caring for themselves in addition to caring for patients. Most of our students participating in this study had not thought about how their own health, or absence of health, could affect patient care and their career choices as physicians. By educating students about their own personal health and well-being, we as medical educators have the power to change the clinical environment, guiding our students to become more professionally and personally responsible for themselves and their patients, to seek help and guidance without fear (e.g., to report a needle stick without fear of being reprimanded by superiors), and to recognize that disclosure in some instances is a moral obligation to both patient and self. Although the sample size was small, and the context of pre-clinical and clinical training provided needed support in understanding the possible differences among these student groups, this study gives medical education a glimpse into what our future doctors think about HIV testing and disclosure, and how difficult it is for them to recognize that they can be patients too, conflicted by professional and personal values and fearful of the conse- quences in their professional lives. Medical education needs to acknowledge that our future doctors may be or become patients with a highly stigmatized disease, to create an environment that neither discriminates patient nor profes- sional, and to guide students in recognizing and resolving conflicting personal and professional values and interests. Declaration of interest:The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article. Note 1.Anonymoustesting uses code numbers to identify your test. Your name is never used. You use the code to get your results. The ethics of HIV testing and disclosure e55 You are the only person who knows your results. With anonymous testing, you have complete control in deciding who to tell and when. Withconfidentialtesting, your name is recorded and linked to your test results. Even though this information is kept private, others may have access to this information, including health care providers, your insurance company, and the health department. Notes on contributors JULIE M. AULTMAN, PhD, is a Bioethicist and an Associate Professor of Behavioral Sciences at Northeastern Ohio Universities College of Medicine and Pharmacy. NICOLE J. BORGES, PhD, is an Associate Professor in the Department of Community Health and Assistant Dean, Medical Education Research and Evaluation in the Office of Academic Affairs at the Boonshoft School of Medicine at Wright State University. 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Ethical, Social and Legal Implications of DisclosurePrior to beginning work on this discussion, be sure to read the required articles for this week. .You are a consulting psychologist for a local clin
Discussing matters of sexual health with children: what issues relating to disclosure of parental HIV status reveal Sara Liane Nam a,b*, Katherine Fielding a, Ava Avalos b,c, Tendani Gaolathe c, Diana Dickinson b,d , and Paul Wenzel Geissler e aInfectious Diseases Epidemiology Unit, London School of Hygiene and Tropical Medicine, London, UK; bThe ART-LINC Collaboration of the International Epidemiology Database to Evaluate AIDS (IeDEA); cAdult Infectious Diseases Care Centre, Princess Marina Hospital, Ministry of Health, Gaborone, Botswana, Africa; dIndependence Surgery, Primary Health, Gaborone, Botswana, Africa; eHealth Policy Unit, London School of Hygiene and Tropical Medicine, London, UK (Received 21 November 2007; final version received 12 June 2008) Little is published about the disclosure of parents’ own HIV status to their children in Africa. Research shows that keeping family secrets from children, including those related to a parent’s HIV status, can be detrimental to their psychological well-being and to the structure of the family. Further, children with HIV-positive parents have been shown to be more vulnerable to poorer reproductive health outcomes. This qualitative study in Botswana conducted in-depth interviews among 21 HIV-positive parents on antiretroviral therapy. The data revealed that parents found discussing the issue of HIV with children difficult, including disclosing their own HIV status to them. Reasons for disclosing included: children being HIV positive, the rest of the family knowing, or the parent becoming very sick. Reasons for not disclosing included: believing the child to be too young, not knowing how to address the issue of HIV, that it would be ‘‘too painful’’ for the child/ren. Concern that other people might find out about their status or fear of children experiencing stigmatising behaviour. Interviews elucidated the difficulty that parents have in discussing their own HIV status and more general sexual health issues with their children. Parents and other guardians require support in managing age-appropriate disclosure to their children. This may further enable access to forums that can help children cope with their fears about the future and develop life skills in preparation for dealing with relationships of a sexual nature and sexual health as children move into adulthood. In developing such support mechanisms, changing family roles in Botswana need to be taken into consideration and the role of other family members in the upbringing of children in Tswana society need to be recognised and utilised. Keywords:HIV/AIDS; disclosure; children; ART; Africa; Botswana Introduction HIV-positive parents taking antiretrovirals are faced with the difficult decision of whether and what details to share about their HIV with their children. Keeping family secrets can be destructive to childrens’ well- being and to the family structure (Cottle, 1980) and the related anxiety can lead to isolation and disen- gagement from possible sources of support for children (Siegel & Freund, 1994). Interviews with children orphaned due to HIV in sub-Saharan Africa reveal that non-disclosure of parental HIV status adversely affected their ability to cope with their parent’s illness or subsequent death (FHI, 2003; Wood, Chase, & Aggleton, 2006). Additionally, a growing body of evidence demonstrates increased sexual and reproductive health risks among children who are vulnerable or orphaned due to HIV (Gregson et al., 2005; Nyamukapa et al., 2008). Some studies have investigated African adult HIV disclosure (Brou et al., 2007; Maman, Mbwambo,Hogan, Kilonzo, & Sweat, 2001; Maman & Medley, 2004; Norman, Chopra, & Kadiyala, 2007; Olley, Seedat, & Stein, 2004; Sagay et al., 2006; Skogmar et al., 2006) and some research describes disclosure to children of the child’s own HIV-positive status (Kouyoumdjian, Meyers, & Mtshizana, 2005; Myer, Moodley, Hendricks, & Cotton, 2006). A review of US studies found that by age 12 13 years, 84% of HIV- positive mothers had disclosed their own HIV status to their children and mean ages of children disclosed to ranged from 7 to 10 years (Murphy, Steers, & Dello Stritto, 2001). A Belgian study found that disclosure of a parent HIV-positive status among African migrant families was lower than disclosure among European families (5% compared to 20.5%, respectively) (Nos- tlinger et al., 2004). However, there is little research about disclosure of parental HIV status to their children in Africa. In other settings, children who have been told their parents are HIV positive have shown lower levels of *Corresponding author. Email: [email protected] AIDS Care Vol. 21, No. 3, March 2009, 389 395 ISSN 0954-0121 print/ISSN 1360-0451 online #2009 Taylor & Francis DOI: 10.1080/09540120802270276 http://www.informaworld.com aggression and more positive self-esteem than those from whom the information has been kept (Murphy et al., 2001). Other research found that adolescents with infected mothers experienced more difficulties with psychosocial adjustment (more symptoms of externalising and internalising problems, less social and cognitive competence) compared to those with non-infected mothers but that depression was higher among adolescents who were informed of their par- ents’ status compared to those who were not informed (Armistead & Forehand, 1995; Forehand et al., 1998). The decision whether to disclose has been shown to be partly based on the child’s perceived maturity and emotional stability and is more common when chil- dren are: older; female; have experienced negative family life events or who display more problem behaviour. Parents who disclosed tend to: have larger social networks; perceive that their children are experiencing HIV-related stigma; experience less stigma, or alternatively have higher perceived stress levels and are less effective at managing parenting demands. Disclosure has also been associated with income, perceived severity of physical symptoms and negative family life events (Armistead, Tannenbaum, Forehand, Morse, & Morse, 2001; Lee & Rotheram- Borus, 2002; Ostrom, Serovich, Lim, & Mason, 2006). Decisions by parents not to disclose are reportedly in order to shelter children from stigma or to allow them a carefree childhood. Among the possible detrimental impacts of disclosure are: pressure to keep it a secret; real or perceived stigma; stress and anxiety (Cree, Kay, Tisdall, & Wallace, 2006; Murphy, 2008). Other stress triggers identified among children in the USA and Africa include fear of: the anticipation of a parent’s death; future losses and the need to adopt a more ‘grown up’ role as a carer (FHI, 2003; Reyland, Higgins-D’Alessandro, & McMahon, 2002). Parents are, however, aware of the dangers of non-disclosure, particularly that children might discover the HIV- positive status of parent(s) from another source (Nostlinger et al., 2004). In the era of HIV in Botswana where prevalence is estimated at 24% (UNAIDS, 2007), family structural transformations are dynamic and the relationship between children, their parents and other family members is evolving. Increasingly, women actively choose to remain unmarried in order to avoid patrilineal family expectations (such as reduced custodial rights over children) and due to lack of trust in men to remain faithful in an age of HIV (Ingstad, 2002). As a result, maternal relatives are more commonly involved in the lives of children while fathers are becoming increasingly isolated from their offspring (Livingstone, 2006). Children are often sent to live with their grandparents freeing theirmother to seek employment (Ingstaad & Saugestad, 1984) or to live with aunts who may be in employ- ment and can support their nieces and nephews through school. A large number of children have at least one parent who is HIV positive and parents will need to develop strategies to discuss managing HIV illness with their children, now that it has become a chronic rather than necessarily terminal disease. In this qualitative study examining factors relating to antiretroviral therapy (ART) adherence, investiga- tors asked participating parents about issues related to disclosure to their children. The findings presented here offer some insight as to why the rates of disclosure of parental HIV status to children from this African setting might be different to those from other settings. Methods The qualitative study examined issues related to adherence to antiretrovirals among 32 adults from two clinical sites in Gaborone, Botswana: the specia- list ART public-sector adult Infectious Diseases Care Centre (IDCC) and a privately run general family practice, The Independence Surgery (IS). In February 2008 the IDCC had around 9,000 ART patients receiving free antiretrovirals and the IS had around 1,500 patients taking antiretrovirals. A grounded theory approach was adopted: in brief, this methodology allows the hypothesis to evolve as the researcher conducts the interviews thereby allowing other important themes and con- cepts to emerge during examination of the core topic (‘‘adherence to antiretrovirals’’ in this study) (Glaser & Strauss, 1967; Strauss & Corbin, 1998). Sampling was purposive: adults who had been on antiretrovir- als for at least six months were eligible to participate and clinicians referred potential participants who would provide a variety of good or poor adherence experiences. A total of 32 people were interviewed, of whom 21 were parents. One-on-one interviews lasting between 45 and 75 minutes were conducted and recorded. A translator was used when necessary. The interviewer asked participants about: ideas and beliefs about HIV and antiretrovirals; stigma; dis- closure; social support and isolation; ideas and practices regarding antiretroviral adherence; health- seeking practices and hopes and fears for the future. In addition, participants who were parents were asked about disclosure of their own HIV status to their children. Data collection from all 32 participants continued until new concepts related to the topic of focus (adherence) ceased to arise. The coding was con- ducted manually by the principal investigator and interviewer for this study who identified key topics 390S.L. Namet al. that arose from the interviews and transcripts. A medical anthropologist guided data collection and analysis through review of selected transcripts. A code book was developed detailing the process of coding following the principles outlined in grounded theory (see Box 1). This paper presents the reasons why participants who were parents chose to disclose or not disclose their HIV status from their children and highlights issues related to parent child commu- nication related to sexual health as important themes that emerged. In common with other research, we focus on children aged five years and older. Results Of the 21 parents interviewed, the mean age was 37 years (range: 22 55 years), 12 were female, 6 were from the private sector and 13 (nine women, four men) were single parents. Twelve were in full-time employment, three were job seeking and all reported feeling healthy. The 21 parents cared for 40 children; 24 were aged between 5 and 18 years old and 16 children were under five (who are not included in this analysis). Three of the parents were responsible for six step or adopted children. Of the 24 children aged five or older, seven children (29%) had been told about their parent’s HIV status; eight (33%) children were thought to have guessed, and nine (38%) were believed to be unaware of their parent’s HIV status (Table 1). Three parents had children living with other relatives, and they had not disclosed their HIV status to their children. Overall, four parents (two women and two men) had disclosed their status to their children older than five years. Reasons for disclosure The reasons for disclosure included that the situation was already known to other family members or increasing ill-health of the parent. Two parents became sick and felt that their children needed to know the reason for their illness or told them in order to impress upon the children the need for caution to prevent them from becoming infected through caring for a sick adult (Quote 1). One female participant hadtwo children aged nine and 15 who were known to be HIV positive themselves. They were disclosed to not by their HIV-positive mother but by her family, in order to explain their own illnesses to them and to impress upon them the need to take their medicines as their mother had failed to tell her children at a time when she was depressed. Quote 1 ‘‘I’ve told my kids. Because they had to take care of me they have to be aware, when I was very sick and I didn’t want to put them at that risk. So I had to tell them.’’(38y old single mother of 12y and 16y old). Box 1: Basic Principles of Grounded theory. ‘‘Grounded Theory is an approach that is induc- tively derived from the study of the phenomenon it represents…it is discovered, developed, and provi- sionally verified through systematic data collection and analysis pertaining to that phenomenon (where) data collection, analysis and theory stand in a reciprocal relationship with each other.’’ (Glaser & Strauss, 1967).’’Analysis takes place through a series of various coding processes that can occur simultaneously with data collection allowing for the theory to develop and be ques- tioned during the interviews. Open codingis the analytic process through which concepts are identified and their properties and dimensions are discovered in data (properties are the characteristics of a category, the delineation of which defines and gives it meaning. Dimensions are the range along which general properties of a category vary, giving specification to a category and variation to theory). Selective codingis the process of integrating and refining theory. Axial codingis the process of relating categories to their subcategories, where coding occurs around the axis of a category, linking categories at the level of properties and dimensions. Table 1. Median ages of children five years or older who have not been told, were thought to have guessed or have been told about their parents’ HIV status. Children’s knowledge of parents’ HIV status: Have not been told Thought to have guessed Have been told Total Number of children (%) 9 (38%) 8 (33%) 7 (29%) 24 (100%) Median age, years (range) 11.9 (5 17) 11 (11 17) 13.4 (9 17) 12 (5 17) AIDS Care391 Reasons for non-disclosure Reasons parents gave for not disclosing to children included feeling children were not old enough and not knowing how to address the issue. Parents worried that the knowledge would be ‘‘too painful’’ for the child/ren and non-disclosure to other people was also partly out of concern that the children might find out from other people and face stigma as a result (Quote 2). Quote 2 ‘‘I love my kids so much they are still at school, and I wouldn’t like for them to be hearing that ‘your mum is positive’, and what, what, what. All these kind of things.’’(38y old single mother of 14y and 16y old). Parents who had not disclosed their status ex- pressed vague plans to talk to their children in the future, but at the time of the interview preferred to leave it to chance. Four parents said that their children saw them taking the antiretrovirals and had probably guessed what they were for, but had not discussed HIV (Quote 3). Quote 3 ‘‘I guess the boy might know, but they [the children] don’t ever ask me about it.’’(48y old single mother of a 17y old son and carer of 14y old niece). Three of these parents said their children re- minded them to take their pills, checked that they had taken them or brought the pills to them with water, even though they had not told their children about their status. This made parents think that these children had guessed their status although they had not been explicitly told and the parents appre- ciated this expression of concern by their children (Quote 4). Quote 4 ‘‘I love it when my kids remind of the medication. Even [the girl] she will just run to the bedroom and give me a glass of water.’’(38y old single mother of 14y and 16y). Discussing sexual health Parents described difficulties in addressing the issues of HIV and sexual relationships with their children. Parents expressed a preference to leave sexual and reproductive health topics for schools to address, although they were not clear about what was taught at school in relation to these issues. Among those who did discuss such topics, only one mother directly addressed preventing pregnancy and protecting one- self from HIV or other sexually transmitted infections (Quote 5). Quote 5 ‘‘I haven’t shared anything with her [my daughter]. Fortunately I’ve never been sick. I always teach her how she should handle herself. At school when some- body gets injured I told her that she should she shouldn’t touch somebody’s blood and she knows that she’s been told at school also. [I tell her] to respect people who are positive to like them. Those who come out, like maybe she will meet one children at school and that one kid is positive or her mum is positive – to love them it’s something that could happen to anybody even to her. So, she has to take care of herself. I started talking to her about relationships when she was 9. The whole reason was [that] kids ask things. You should guide your child to choose what kind of a friend [she] should make. People think that when you talk to a child about a relationship, you are teaching her to do that [develop sexual relationships], but you are not. But you are teaching her [is] that she should be careful in choosing friends.’’(37y old single mother of a 13y old). Three parents felt it was not necessary to talk to their children about protecting themselves from HIV because they were ‘‘good’’ children and such studious and well-behaved children who were not considered to be at risk of HIV. Conversely, parents felt they would be more likely to discuss the ‘‘dangers’’ of HIV and pregnancy if a child was considered ‘‘naughty’’ or ‘‘troublesome’’ or who spent time with friends whom parents considered inappropriate (Quote 6). Two parents described discussing HIV in general as an educational intervention or to prepare the children for the uncertain future. Quote 6 ‘‘The eldest girl who is 15, ah! She doesn’t really seem to be interested in most of those things she’s the type of person who gets 99% at school every time so in her I don’t see much of a problem she’s quite well educated. She’s very disciplined. The problem may arise form the last born [11y] hey! That one she needs lots of guidance she was clever at school, but she’s not good, and, eish! some of [her friends] are older than her, you know, so she joined those instead of learning [from] her sister this one is going to give us problems, so we need to find information and start guiding her now.’’ (38y old father of three). Discussion This study found that HIV-positive parents taking antiretrovirals had difficulty discussing their HIV status with their children, as has been found among African immigrants overseas (Myer et al., 2006). This study is limited by its small sample size but even so, the depth of information gathered reveals parental inhibition about discussing reproductive and sexual 392S.L. Namet al. health with their children. In common with other research (Lee & Rotheram-Borus, 2002), parents in this study disclosed their HIV status in response to their own worsening health and appeared more likely to disclose to older (median age 14 years), rather than younger (median age 11 years) children. Parents also confirmed findings from other studies for the reasons not to disclose their HIV status. This included wanting children to have a carefree childhood, children being too young, not wanting to worry older children and not wanting children to be hurt by the reaction of others (Nostlinger et al., 2004). Research from the USA has found that adoles- cents who knew their parents’ HIV status fared no worse in terms of emotional distress, self-esteem or parental bonding than those who had not been told (Lee & Rotheram-Borus, 2002). In contrast, unstable family circumstances and failure to discuss family life issues have been negatively associated with adolescent sexual behaviour in West Africa (Odimegwu, Solanke, & Adedokun, 2002). Respect for one’s elders, and adult avoidance of discussion about intimate issues has created an un- communicative environment about sexuality in Africa even in the era of HIV (Babaloa, Vondrasek, & Brown, 2001; Fortes, 1965). In Botswana, it is generally considered inappropriate for children to discuss sexual matters with their mothers, even more so with their fathers. Although parents in this study were aware that their children were taught about HIV at school, they did not know what they were learning. The difficulty that parents have in talking to children about their HIV has also been recorded in Zambia where it resulted in poor succession planning (FHI, 2003). The need for family-based, intergenerational HIV-treatment programmes has been recognised (Rotheram-Borus, Flannery, Rice, & Lester, 2005). Parents need age-appropriate support about when, how and what to tell their children about their own HIV status, and about the disease generally. Parents need guidance on managing children’s responses, and on planning for the future. Additionally, in the development of support mechanisms to advise guar- dians on how to discuss HIV and sexual health in general with children, the changing family roles and typical intergenerational modes of communication need to be taken into consideration. This might contribute to providing vulnerable children (and orphans) with access to life skills to mitigate the impact of their vulnerability through identifying suitable support mechanisms for them in addressing these issues. For example, an appropriate counselling model might consider the role of parental siblings andtheir offspring in the typical upbringing of Batswana children. This would include involving children’s aunts, uncles and cousins in the disclosure process and in their education in matters related to HIV and reproductive health. The feature of openness between alternate generations as seen in other African settings (Whyte, Alber, & Geissler, 2004) is not a typical feature in Tswana culture. With the increasing number of grandparents taking care of their grandchildren, mechanisms also need to address communication between grandparents and grandchildren. While Botswana strives to achieve an AIDS-free generation by 2016, the children of this new genera- tion will bear the responsibility of coping with parents or carers who have HIV. Additionally, in order to achieve the vision of 2016, children need to be equipped with the necessary life skills to assist them in protecting themselves from contracting and trans- mitting HIV. Ensuring the provision of appropriate forums for discussing sexuality could play an im- portant part in promoting safer sexual practices among children and young adults. This requires dialogue not only through schools, churches, peers and the media but also within and between family members. Parents and other carers will need struc- tured support in dealing with disclosure to children and in discussing matters related to the reproductive health with children. Acknowledgements The authors wish to acknowledge: all the staff, including Ms Mpho Zwinila, and patients who took part in this study. Funding was provided by the ART-LINC collabora- tion of the International Epidemiology Database to Eval- uate AIDS (IeDEA), the DfID HIV & STI Knowledge Programme and GlaxoSmithKline. 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Ethical, Social and Legal Implications of DisclosurePrior to beginning work on this discussion, be sure to read the required articles for this week. .You are a consulting psychologist for a local clin
Ethnic differences in HIV-disclosure and sexual risk Jason D.P. Bird a*, David D. Fingerhut a,b and David J. McKirnan a,b aDepartment of Research, Howard Brown Health Center, Chicago, IL, USA; bDepartment of Pscyhology, University of Illinois at Chicago, Chicago, IL, USA (Received 23 March 2010; final version received 7 July2010) Little is known about ethnic differences in HIV-disclosure to sexual partners or the relationship between HIV- disclosure and sexual risk. Differences in HIV-disclosure rates between African-American and White men who have sex with men (MSM) were analyzed using data from the Treatment Advocacy Program. In general, the findings suggest that African-Americans are less likely than Whites to disclose their HIV status to sexual partners. The findings also suggest that the African-American participants who disclosed to HIV-negative partners were significantly less likely to engage in unprotected anal sex with HIV-negative partners and partners whose HIV status was unknown than those participants who did not disclosure to HIV-negative partners. Although HIV- disclosure appears to be an important factor to consider in HIV-prevention efforts, there are unique factors that influence HIV-disclosure decisions for African-American MSM. Interventions should consider these unique challenges before focusing on HIV-disclosure as a primary tool for reducing the transmission of HIV. Keywords:HIV/AIDS; HIV prevention; African-Americans; men who have sex with men Background/Significance Racial disparities in new HIV infections have become increasingly pronounced, with African-Americans accounting for over 50% of all newly diagnosed HIV/AIDS cases in 2007 (CDC, 2009). Moreover, African-American men who have sex with men (MSM) are a highly vulnerable subgroup with epidemiological data showing they are twice as likely as White MSM to become infected with HIV (CDC, 2009). In response to these rising infection rates, prevention efforts have shifted toward more routine testing and a greater emphasis on prevention inter- ventions with HIV-positive individuals (CDC, 2009; Crepaz & Marks, 2003; Gorbach et al., 2004; Sullivan, 2005). These intervention shifts will inevi- tably fuel the debate regarding the relationship between HIV-disclosure and sexual risk. Given the racial differences in HIV transmission rates, it is possible that HIV-related behavior, such as HIV status disclosure, will show similar disparities and this study seeks to explicitly examine what racial differences in HIV-disclosure to sexual partners might exist. Debate continues regarding the cause ofracial disparities in the rates ofHIV infection. Research shows that African-American MSM are not more sexually risky and do not have significantly more sexual partners than their White counterparts (Millett, Flores, Peterson, & Bakeman, 2007; Millett, Peterson, Wolitski, & Stall, 2006). Recent data does suggest,however, that riskier sexual networks may be respon- sible for higher infection rates for African-American MSM (Friedman, Cooper, & Osborne, 2009; Kissinger & Malebranche, 2007). In other words, although African-American MSM do not appear to engage in significantly more unprotected sex, the sexual net- works in which they engage contain more infected individuals. Therefore, when unprotected sex occurs, there is a greater likelihood their partner will be HIV- infected, increasing the probability of HIV exposure and infection (Friedman et al., 2009; Kissinger & Malebranche, 2007). To complicate matters, despite public health messages that have urged people to treat all casual or anonymous sexual partners as though they are potentially infected with HIV, evidence suggests this does not occur in practice (Klitzman et al., 2007; Simoni & Pantalone, 2004). In fact, research suggests that safer sex decisions, such as using a condom, is influenced by the assessments, or assumptions, an individual makes about their partners’ HIV status and the specific risk inherent in the particular encounter (Golden, Brewer, Kurth, Holmes, & Handsfield, 2004; Klitzman et al., 2007; Simoni & Pantalone, 2004). Consequently, a dependence on condom use as the sole avenue for decreasing HIV- infection rates runs the risk of creating a culture of sexual silence that discounts the important role that both direct and indirect communication, such as HIV- disclosure, play on sexual risk decisions (Klitzman et al., 2007). *Corresponding author. Email: [email protected] AIDS Care Vol. 23, No. 4, April 2011, 444 448 ISSN 0954-0121 print/ISSN 1360-0451 online #2011 Taylor & Francis DOI: 10.1080/09540121.2010.507757 http://www.informaworld.com Although there is little consensus regarding the connection between HIV-disclosure and sexual risk (Marks & Crepaz, 2001; Simoni & Pantalone, 2004; Sullivan, 2005), there is some research that suggests that HIV-disclosure is associated with decreased sexual risk with HIV-negative partners or partners whose HIV status is unknown (Chen, Gibson, Weide, & McFarland, 2003; Golden et al., 2004; Klitzman et al., 2007; Simoni & Pantalone, 2004). This may be particularly true for HIV-negative men, where data suggest that non-HIV infected MSM are more likely to use a condom with a partner who is known to be HIV-positive (Golden et al., 2004). Likewise, many argue that HIV-disclosure is an important part of sexual negotiation in that it allows all parties to make informed decisions about with whom and how a sexual encounter occurs (Gorbach et al., 2004; Palmer, 2004). Therefore, HIV-disclosure appears to be an important factor to consider and may prove an important avenue through which to alter sexual risk- taking (Klitzman et al., 2007). Several possible factors may influence rates of HIV-disclosure, including time since diagnosis, age, education, economic status, HIV-related stigma, and race/ethnicity. Research indicates that time since diagnosis is related to the rate ofdisclosure, with the lowest rates occurring for individuals who have had their HIV diagnosis for fewer than three years (Crepaz & Marks, 2003; Klitzman, 1999; Sullivan, 2005). However, as Sullivan (2005) found in a meta- review of17 articles regarding HIV-disclosure pub- lished between 1996 and 2004, age, education, and economic status are generally unrelated to HIV- disclosure. Researchers have also looked at situational fac- tors to HIV-disclosure such as sexual venue, assumed partner HIV status, and type ofrelationship (i.e., anonymous, casual, or long-term) (Courtenay-Quirk, Wolitski, Parsons, & Gomez, 2006; Gorbach et al., 2004; Klitzman & Bayer, 2003; Klitzman, 1999; Marks & Crepaz, 2001; Simoni & Pantalone, 2004). Yet, there has been very little research on the role of HIV-related stigma on disclosure, which could be a fundamental barrier to disclosing one’s HIV status (Bird & Voisin, in press). For example, one might choose to not disclose to certain types ofpartners or in certain sexual settings for fear of the potential negative repercussions related to HIV-related stigma. Whereas research has shown that African-American MSM are less likely to disclose their same-sex sexual behavior than Whites in general (Millett et al., 2006), little is known about whether there are ethnic differences in HIV-disclosure to sexual partners. Furthermore, there is no research investig- ating the relationship between disclosure and HIVtransmission risk among African-American MSM. Therefore, this paper describes ethnic differences in HIV-disclosure, sexual risk-taking behavior, and the relationship between HIV-disclosure and sexual risk in a sample ofAfrican-American and White partici- pants. Methods The data analyzed for this paper were derived from baseline interview data from the Treatment Advocacy Program, a CDC-funded behavioral intervention for 317, ethnically diverse, HIV-positive MSM, con- ducted through Howard Brown Health Center, the University ofIllinois at Chicago, the Chicago De- partment ofPublic Health, and Saint Joseph Hospi- tal. For this analysis, HIV-disclosure was defined as disclosing one’s HIV-positive status to 90% or more oftheir sexual partners, which represents a conserva- tive threshold for identifying patterns of disclosure vs. non-disclosure. We also used two measures ofsexual behavior, sexual risk, which was defined as any unprotected anal sex regardless ofthe partners’ HIV status, and transmission risk, which was defined as any unprotected anal sex with an HIV-negative partner or a partner whose HIV status was unknown. Data analyses We conducted two levels ofanalyses in this paper. First, we examined the sample characteristics for differences across ethnicity. Next, we examined rates ofsexual risk, transmission risk, and HIV-disclosure by ethnicity using a univariate analysis ofvariance (ANOVA). We chose to conduct an ANOVA to control for important factors known or suspected to relate to disclosure. For all ANOVA analyses, we entered age, time since diagnosis, income, and educa- tion as covariates. We also analyzed ethnic differences in HIV-disclosure to sexual partners on three separate levels based on their partners’ known or perceived HIV status, (i.e., HIV-positive, HIV-negative, and HIV-unknown). Finally, we examined the relation- ship between HIV-disclosure and transmission risk. Results Sample characteristics African-American MSM represented 32% (N 101) and White MSM represented 47% (N 150) ofthe sample of317 HIV-positive participants in the Treatment Advocacy Program (TAP) study. There were no statistically significant differences between the African-American and White participants in ageAIDS Care445 and number ofsexual partners; however, the sample differed on education (earned at least a Bachelor’s degree: [AA vs. White] 19.8% vs. 44.7%,pB0.001), income (annual incomeB$10,000: [AA vs. White] 50% vs. 17.4%,pB0.001), and years since HIV diagnosis ([AA vs. White] 9.5 vs. 7.6,pB0.05). Sexual risk/Transmission risk Controlling for age, income, education, and time since an HIV diagnosis, we found that African- American participants were significantly less likely than White participants to engage in sexual riskF(1, 238) 4.95,pB0.05. However, we found no differ- ences in HIV-transmission risk by ethnicity; in other words, the African-American and White participants engaged in behavior likely to transmit HIV at similar rates. Disclosure We analyzed HIV-disclosure for three levels of sexual partners’ serostatus: HIV-positive, HIV-negative and unknown HIV status. For each ANOVA conducted, we entered age, income, education, and time since HIV diagnosis, as covariates. On the whole, African- American participants were significantly less likely to disclose their HIV status to partners compared to White participants as demonstrated in Figure 1. Specifically, African-American participants were less likely to disclose their status to HIV-positive partners, F(1, 213) 12.51,pB0.001, HIV-negative partners, F(1, 209) 14.88,pB0.001, and partners whose HIV status was unknown,F(1, 212) 5.46,pB0.05. Disclosure and transmission risk When we analyzed a subsample ofparticipants, again controlling for age, income, education and time since HIV diagnosis, we found that African-American participants who disclosed to 90% or more oftheir HIV-negative sexual partners had significantly lesstransmission risk than the White participants who disclosed to 90% oftheir HIV-negative partners, F(1, 107) 4.87,pB0.05. More importantly, those African-American participants who disclosed to 90% or more oftheir HIV-negative partners reported significantly less transmission risk than those Afri- can-American participants who did not disclose at the 90% level,F(1, 89) 5.57,pB0.05. However, this pattern was not replicated with 90% disclosure to those sexual partners whose HIV status was un- known. Conclusion/Discussion Overall, HIV-disclosure and sexual risk-taking among the African-American and White participants in this study followed unique patterns. Although the African-American participants were less likely than the White participants to report engaging in sexual risk activities (i.e., unprotected anal sex with a sexual partner), there were no significant differences between the two cohorts in HIV-transmission risk behavior (i.e., unprotected anal sex with a known HIV- negative partner or a partner whose HIV status was unknown). In general, African-American participants were significantly less likely to disclose to their sexual partners regardless oftheir partners’ HIV status. Yet, those African-American participants who did disclose at the 90% level to their HIV-negative sexual partners were significantly less likely to engage in transmission risk than those African-American or White partici- pants who did not disclose to their HIV-negative sexual partners at the 90% level. Therefore, disclo- sure to HIV-negative partners appears to have an important protective relationship to decreasing trans- mission risk. Ifthe hypothesis is that African-American MSM are engaged in more risky sexual networks (with a greater probability ofencountering an HIV-infected partner), then the fact that the participants reported engaging in less overall sexual risk is unlikely to significantly decrease their exposure to HIV. The fact that there were no significant differences between the African-American and White participants intrans- mission riskbehavior suggests that decreasing overall risk may not be sufficient in decreasing the rate of HIV infection; to significantly impact the transmis- sion ofHIV, it is essential thattransmission riskbe reduced. In this sample, disclosure to HIV-negative partners appears to be one effective tool in accom- plishing this important goal. However, the fact that the African-American participants were significantly less likely to disclose to their HIV-negative partners or those partners whose HIV status was unknown Figure 1. Disclosure to at least 90% ofsexual partners by sero-status. Note: *pB0.05; **pB0.01. 446J.D.P. Birdet al. complicates the usefulness of disclosure as a preven- tion tool. Therefore, to effectively leverage HIV-disclosure in prevention interventions, the challenges must be fully understood and addressed. Previous predictors ofdisclosure did not seem to apply to this subset of men. For example, the African-American MSM were more likely to have been diagnosed with HIV for a longer period oftime than the White MSM, a factor that has generally been associated with increased HIV-disclosure. This suggests that disclosure patterns for African-American MSM may be influenced by unique factors that are different than those identified in the general literature. One hypothesis is that African-American MSM experience more HIV- related stigma than White MSM and that this HIV- related stigma serves as a primary and fundamental barrier to disclosure. Goffman (1963) describes stig- ma as an intensely discrediting attribute, general knowledge ofwhich can interfere with an individual’s ability to successfully function within their commu- nity and society. HIV infection, which is often interpreted as a reflection of an individual’s poor moral and deviant character and a signifier of disease and death, can stimulate intense stigmatization. This stigmatization extends into the gay community, where the potential negative consequences ofdisclo- sure can result in social isolation and rejection from friends, community, and sexual networks (Courtenay- Quirk et al., 2006). Ifthis hypothesis is accurate, then it illuminates a fundamental obstacle that must be addressed to understand individuals’ motivations to disclose or not to disclose their HIV status. One response to HIV-related stigma may be that some participants choose to avoid sexual risk instead ofdisclosing, thereby avoiding the stigma and nega- tive social consequences that might be associated with HIV-disclosure. However, this strategy is not effective ifnot practiced consistently. Furthermore, the data presented here suggest that decreased transmission risk is not related to non-disclosure; therefore, it does not appear that using condoms represents an alter- native strategy to HIV-disclosure. It is also important to note that, although dis- closure to HIV-negative partners was associated with less transmission risk, disclosure to sexual partners whose HIV status was unknown did not appear to have any significant impact on transmission risk. The data available in this study are not sufficient for explaining why these patterns exist. One possible hypothesis is that an individual may be willing to engage in sexual risk with a partner whose HIV status is unknown once they have disclosed because there is a sense that they have fulfilled their responsibility and that their partner is making an informed decisionabout engaging in risk. However, the fact that they do not know their partner’s HIV status suggests that the communication occurring around HIV is unequal. This could be problematic ifthe participant is choos- ing to use non-direct strategies to disclose (i.e., hinting about their status or leaving HIV-specific magazines or medications in plain sight), which could potentially lead to a misunderstanding or inaccurate understand- ing about his HIV status. Ultimately, it does not appear that non-mutual HIV-disclosure was sufficient for decreasing transmission risk in this sample. Overall, the data show that in addition to a conti- nuing need for culturally tailored HIV-prevention interventions that target sexual risk-taking behavior, focusing on issues of HIV-disclosure may be an important avenue for decreasing transmission risk. However, the data also suggest that interventions specifically targeting disclosure must take into ac- count ethnic differences in disclosure patterns, the unique population-level barriers to disclosure, and the primary goals for targeting disclosure. For ex- ample, focusing on disclosure with African-American MSM may be one avenue for decreasing transmission risk, at least with known HIV-negative partners. However, it must also be acknowledged that there are unique barriers to HIV-disclosure for African- American MSM that must be explored and under- stood ifthere is an expectation that HIV-disclosure should occur. Focusing on disclosure without regard to these unique challenges could be counterproduc- tive, exacerbating the barriers to disclosure rather than diminishing them. While these findings highlight important points for future intervention, there were limitations to this study. First, the disclosure data are partner-based rather than incident or episode-based, which could have resulted in underreporting in non-disclosure. For example, ifan individual did not disclose with one sexual partner until the third sexual encounter, this partner may be classified as someone to whom they disclosed, even though non-disclosure also occurred. Second, we did not collect demographic information about the participants’ sexual partners, such as age or race. Therefore, we are unable to examine whether partner-level characteristics influ- enced disclosure decisions such as concordant race. Finally, data from the Treatment Advocacy Program cannot fully evaluate the reasons why these risk and disclosure patterns are different between African-American and White participants; however, they highlight the need for greater quantitative and qualitative research regarding these group differences. It is important to examine issues ofHIV-disclosure and the relationship between disclosure and risk through future studies to more clearly define theAIDS Care447 particular patterns ofsexual risk and HIV-disclosure for African-American MSM. Additionally, a parti- cular focus on the role of HIV-related stigma would increase our understanding ofthe challenges and barriers associated with disclosure. This type of information will be essential to accurately assess the impact ofinterpersonal communication in HIV interventions, safer sex negotiation, and HIV-disclo- sure among groups at high risk for HIV infection. Acknowledgements This study was funded by the Centers for Disease Control and Prevention ofthe Department ofHealth and Human Services and conducted through Howard Brown Health Center in collaboration with the University ofIllinois Chicago, the Chicago Department ofPublic Health, and the medical clinic ofSlotten, Klein, and French. References Bird, J., & Voisin, D. (in press). 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