KILMARX, PETER H. MD*,†; HAMERS, FRANÇOISE F. MD, MPH*,†; PETERMAN, THOMAS A. MD, MSc*
IN 1994, 2.4 MILLION human immunodeficiency virus (HIV) tests were performed in federally funded facilities; of those, 42,662 (1.8%) were positive. Sexually transmitted disease (STD) clinic patients accounted for 26% of the positive tests.1 The major goals of HIV counseling and testing are (1) to provide HIV testing to those who wish to know their serostatus; (2) to reduce high‐risk behaviors of both HIV‐infected and HIV‐uninfected persons; and (3) to provide referrals to medical and social services for those who are HIV‐infected.2 Although there have been evaluations of the effectiveness of HIV counseling and testing in helping patients learn their serostatus3 and in changing risk oehaviors,4,5 whether HIV‐infected patients receive medical and social services after posttest counseling has not been well evaluated.
Early diagnosis of HIV infection may reduce morbidity and mortality through early clinical intervention, and provision of clinical services to HIV‐infected patients is associated with a reduction in HIV‐transmission risk behavior.6 However, there have been reports of negative social consequences of receiving a positive HIV test result, including violence, anxiety, depression, and discrimination in housing and employment.7,8 Disclosure of infection status to sex partners and others is another important outcome of HIV testing. However, much information about what happens to HIV‐infected patients after posttest counseling is anecdotal or collected from HIV‐clinic‐based populations.9,10 HIV‐clinic‐based populations are not representative of all people with HIV infection, and such studies cannot evaluate whether some patients are not receiving medical care.
In this study we provide quantitative information about the experiences of HIV‐infected STD clinic patients after posttest counseling. Questions addressed accessing medical and social services, social consequences of infection, disclosure of infection status, and sexual behavior.
Although many prominent persons living with HIV have shared their perspectives, HIV infection is associated with lower socioeconomic status, and the viewpoints of HIV‐infected members of marginalized groups with high rates of HIV infection are not well known. Most interviewees were black and heterosexual and within a low socioeconomic status. Here we also report their responses to open‐ended questions about their concerns, how their lives had changed since they learned they were HIV‐infected, how to improve the lives of people living with HIV, and how posttest counseling might help HIV‐infected patients.
Interviews were conducted in three cities with STD clinics at which high numbers of both men and women had positive HIV tests and received posttest counseling: Baltimore, MD; Miami, FL; and Newark, NJ. In each city, potential participants were identified from clinic records. STD clinic patients whose first confidential, HIV‐positive posttest counseling was between 6 and 24 months before the study dates and who were at least 18 years of age at the time of the study were eligible. We attempted to contact as many patients as necessary to interview a total of 25 men and 25 women at each site. If patients reported that they initially learned of their infection more than 24 or less than 6 months before the interview (e.g., by anonymous testing or from another test site), their interview results were excluded from this report.
Potential participants were contacted confidentially by trained STD disease intervention specialists using usual methods to locate patients, including telephone calls (if a number was available), a letter, home visits, and inquiries with hospitals, jails, and the post office for additional information if necessary. Study recruitment lasted from 1 to 2 months at each site. Information was abstracted from the clinic records of all potential participants in order to compare interviewees with those who were not interviewed.
Once contacted, potential participants were informed about the study and invited to participate. Interviews were conducted by trained study personnel using a standardized questionnaire. One of the investigators performed 30% of the interviews. Most interviews were conducted in the STD clinics. Six interviews were conducted either in the interviewee's home, by telephone, in jail, or in the hospital. Interviews were conducted between January and September 1995. After the interviews, referrals for medical or social services were made as needed. Each interviewee was given $25 for travel expenses. The study protocol was approved by a Centers for Disease Control and Prevention (CDC) institutional review board and the states of Maryland, Florida, and New Jersey.
Data were entered into Epi Info (Version 6.03; CDC, Atlanta, GA) and analyzed in SAS (Version 6.11; SAS Institute, Cary, NC). Mantel‐Haenzsel, Fisher's exact, Kruskal‐Wallis, paired group t tests, and chi‐square tests were used to compare groups. Responses to open‐ended questions were written on the questionnaire by the interviewer and entered into the study database. For each of six open‐ended questions, we report the percentages of similar responses. We also present tables with a selection of individual responses representing both the dominant themes and also the more striking unique responses. Responses listed in the tables were chosen by consensus of the authors.
We attempted to locate 416 patients. Of those, we interviewed 154 (37%) and were unable to locate 227 (55%). Twenty‐three patients (6%) refused to be interviewed, and 12 (3%) had died. None of the 416 patients that we attempted to locate were under 18 years of age at the time of the study. Twelve of the interviewed patients (3%) had first been notified of a positive HIV test result more than 24 or less than 6 months before their interview, leaving 142 patients (34%) whose interview results are included in this report. There were 46 interviewees included from Baltimore, 46 from Miami, and 50 from Newark. We are not aware of any breaches in confidentiality as a result of this study.
Comparison of Interviewees and Noninterviewees
Interviewed patients were similar to patients that were not interviewed. The two groups were similar with regard to sex, age, race, HIV risk factors, reason for visit and diagnosis at initial visit (when HIV testing was performed), and STD history (data not shown). The only significant differences (P < .05) of a total of 21 comparisons were diagnosis at the initial visit (37% of men interviewed vs. 18% of men not interviewed had "no STD," P = .02; and 16% of men interviewed vs. 25% of men not interviewed had gonorrhea, P = .05) and history of gonorrhea (46% of women interviewed vs. 23% of women not interviewed, P = .02).
Characteristics of Interviewees
Most of the 142 interviewees were black and heterosexual and within a low socioeconomic status (Table 1). Of the 28 (20%) who reported a possibly HIV‐related infection or cancer, in most cases it was oral (14 interviewees) or vaginal (three interviewees) candidiasis.
Most interviewees were receiving medical care. At two of the study sites, HIV‐infected patients were referred to university‐affiliated HIV‐specialty clinics. At one site patients were given follow‐up appointments at the STD clinic, which also provided primary care for HIV‐infected patients. Interviewees were asked, "Since you learned that you have HIV, where do you usually go to get medical care?" Twenty‐three percent either had no usual source of medical care or used the emergency room for medical care (Table 2). At two study sites, most interviewees reported receiving care from the clinic to which the STD clinic usually refers HIV‐infected patients (one to the STD clinic and one to a university hospital). At the third site, which refers patients to a university hospital, only one fourth reported receiving care at that university hospital.
When asked specifically "Have you ever been to a doctor or clinic to get care for your HIV infection since you learned about your HIV infection," 25% of interviewees responded that they had never received medical care for their HIV infection. Since they learned of their infection, 54% of interviewees had received an influenza or pneumoccal vaccine, 75% had had their CD4 lymphocyte count performed, and, of the 40 who knew their CD4 lymphocyte count to be less than 500, 87% had been prescribed zidovudine. In all, it had been recommended to 57 interviewees that they take zidovudine, and 82% of them had taken it. Eight reported reasons for not taking it: three were afraid of side effects; three said they did not need it; one did not think it worked; and one did not take it because of lack of money.
Twenty‐six interviewees did not have a usual source of medical care other than an emergency department and had not made an initial referral clinic visit. Eleven of them reported that the main reason for not going was that they were never referred. Five said that they did not go because they were "in denial"; five said they "did not need it"; two said they did not go because they were afraid to be seen by others who would then know that they were HIV‐infected; two said they did not go to their referral clinic because it was "God's will" that they were infected so they should not get medical care; and one said that he did not go because of lack of transportation. None said that he or she did not go to an initial clinic visit because of lack of money. Overall, four patients (3%) said that they had been refused any treatment because of lack of money. This included care unrelated to HIV infection, such as cosmetic surgery in one case.
Interviewees who did have a usual source of medical care other than an emergency department (N = 109) were asked about problems they experienced getting medical care. Each of the potential barriers about which we inquired was a problem for some interviewees (Table 3). They were also asked to identify the medical service that they had the most trouble receiving. Of the 109, 78% had not had difficulty getting any medical service; the others said they had the most difficulty getting dental care (8%), eye care (6%), x‐rays (4%), medication (2%), or mental health care (1%).
The responses about medical care were similar in the three sites, including the proportion of interviewees who reported no usual source of care or that they got care only from an emergency department. The exception was that a higher proportion of patients had had a CD4 lymphocyte count performed at the STD clinic that provided follow‐up care for HIV‐infected patients.
Interviewees were asked whether they knew where to get specific social services, whether they had contacted the facility, and whether they had tried but had been unsuccessful in getting them (Table 4). Most patients knew where to get services, and many had contacted the facilities to get help finding a doctor, HIV education, or counseling. In contrast, most interviewees did not know where to get help with transportation, home nursing, or child care.
Twenty‐seven percent of interviewees said that the service they currently needed the most was financial assistance; 17% reported that they did not need any service; 16% said they currently needed health care the most; 5% to 10% each said housing, emotional support, or mental health counseling; and less than 5% each said employment, substance abuse treatment, transportation, personal care, or education.
In general, the interviewees had disclosed their infection status to their sex partners and they had disclosed to select people who had been very accepting of the interviewee. Forty interviewees had first disclosed to a sex partner; 58% of those sex partners had been accepting or very accepting of the interviewee when they were informed, 17% were indifferent, and 23% were rejecting or very rejecting. Forty‐four interviewees had first informed a relative and 41 had first disclosed to someone who was not a sex partner or a relative. In contrast to the sex partners, 85% of these other people had been accepting or very accepting of the interviewee when informed, 7% were indifferent, and only 7% were rejecting or very rejecting. Fifteen interviewees (11%) had not told anyone about their infection. Five of them said they had emotional concerns or were afraid of rejection; one had financial concerns; and none said that he or she was worried about violence as the reason for not telling anyone. The six others that responded gave a variety of reasons such as "it's no one's business but mine," or "I haven't thought about being HIV‐positive."
Interviewees were asked about disclosure to the people with whom they lived. They had told almost all of their cohabiting sex partners that they were HIV‐infected and had told smaller proportions of other adults or children. Most of these cohabiting people who had been informed were very accepting of the interviewee (Table 5).
At two of the three sites interviewees were asked about disclosure to family members and friends, about people they wish they had not told, and about people they wanted to tell but had not. Of the interviewees at those two sites, 28% said that they had told all or almost all of their family members about their infection; 37% had told one or only some family members; and 35% had told no family members. Eleven percent said that they had told all or almost all of their friends about their infection; 42% had told one or only some friends; and 47% had told no friends. Twenty percent of interviewees said that there was someone that they wished they had not told about their HIV infection. These included family (7 cases), friends (4), sex partners (3), and employers (2); none of them were spouses. The reasons included rejection of the interviewee (8 cases), disclosure to others (6), and a reduction in job benefits (1). Thirty‐four percent said that there was someone they wanted to tell but had not. In 3 cases this was a sex partner; others were mostly family members (24 cases); none of them were spouses. Reasons for not telling included fear of rejection, not knowing how to tell, and not wanting to burden the other person.
Some interviewees had experienced major negative social consequences as a result of learning that they were HIV‐infected (Table 6). The five people who lost their job were 8% of all those who were employed when they found out that they were infected. About 10% of interviewees reported that they were being treated better by family members and/or by medical professionals since they found out about their HIV infection, whereas about 5% believed that they had been treated better by a sex partner, by friends, and/or by other professionals (such as lawyers or social workers). About 10% each believed that they had been treated worse by family members and/or by friends, and less than 5% each said that they had been treated worse by a sex partner, by medical professionals, and/or by other professionals.
Depression and Suicide
Sixty‐five percent of interviewees said that they had felt depressed since they found out about their HIV infection, whereas 39% said that they had felt depressed "lately" at the time of the interview. Four percent said that they had tried to hurt or kill themselves since they found out, and 16% said that they had thought about trying to hurt or kill themselves.
According to the interviewees' self‐reports, they were less active sexually after posttest counseling, and most main sex partners were aware of the interviewee's HIV infection (Table 7). They reported a median of one episode of sexual intercourse per month since posttest counseling and a median of 10 episodes per month in the year before they learned of their infection. Interviewees were asked "At the time you learned that you had HIV, was there one person that you considered to be your main sex partner, like a wife/husband, girlfriend/boyfriend, or lover?" Of the those 80 main partners who had been informed, 56% were very or somewhat accepting of the interviewee, and 29% had been very or somewhat rejecting. Of 18 interviewees who had main sex partners who had not been informed, 11 said that they had not done so because of fear of rejection, and 4 said that they had not done so because of fear of violence (all 4 were women). Of the 101 main partnerships at the time of posttest counseling, 54 had terminated at the time of the interview. In 22 (40%) of these cases the interviewee believed that the relationship had ended because the interviewee was HIV‐infected.
Fifty‐five interviewees had a main sex partner at the time of the interview. There was more reported consistent condom use with partners who were known to be HIV‐negative (Table 8). In 11 (20%) of the 55 cases, the partner was either known to be HIV‐negative or the partner's HIV status was unknown and the interviewee reported that they did not always use condoms. Similar proportions of male and female interviewees had current main sex partners and reported consistent condom use with those partners.
The men in the study reported a median of one casual sex partner since they were posttest counseled (mean 2.6); for women the median was zero (mean 2.2). In contrast, the men reported that in the year before learning about their infection, they had a median of 3 sex partners (mean 10.0); the women had a median of 2 partners (mean 4.2). The 72 interviewees with casual sex partners reported that they had always used condoms with 81% of these partners (Table 7). In contrast, they reported that condoms had always been used with 32% of their sex partners in the year before they found out that they were HIV‐infected. Only 17% of all casual partners had been told that the interviewee was HIV‐infected before having sex with them for the first time after the interviewee had found out that he or she was HIV‐infected.
Attitudes About HIV Testing
Most interviewees had positive attitudes toward HIV testing (Table 9). Eighty‐one percent of interviewees said that there were benefits to finding out that one was HIV‐infected. Preventing HIV transmission, getting medical care, and taking better care of oneself were each cited as benefits by about one third of interviewees, whereas being able to plan for the future, getting off of drugs, or getting more social services were each noted by about 10%. On the other hand, 44% of interviewees believed that there was harm in finding out one was HIV‐infected. A third said that getting depressed was the harm, whereas about 5% each noted discrimination and reduced sexual activity as harms.
Of the 142 interviewees, 66 (46%) reported that there was something they used to do before they knew that they had HIV that they no longer did (Table 10). This question was asked immediately after the questions about sexual behaviors. Thirty‐one of them said that the one thing that they no longer did that was most important to them was something sexual, including unprotected sex or sex without a condom and having fewer sexual partners. Other interviewees mentioned less socializing (9 cases), physical limitations (7), stopping substance abuse (6), working (4), and not being able to have children (4).
Twenty‐six interviewees (18%) said that since they knew that they had HIV, they had done something that they had always wanted to do before but never did (all responses listed in Table 11). Several had traveled; others described religious activities, improving family relationships, seeking out new experiences, and decreasing substance abuse.
Fifty‐six interviewees (39%) said that they planned on doing something that they had always wanted to do before but never had done (Table 12). Twenty‐four wanted to travel somewhere and 13 mentioned some new experience. Others mentioned continuing their education (7 cases), getting a job (4), visiting family members (3), or starting a business (3).
Interviewees were asked what top problems they most worried about, and up to five responses were recorded for each person (Table 13). At least one concern was mentioned by 122 interviewees (86%). Ninety‐three said they were worried about getting sick or dying; 44 were worried about the welfare of their children; and 35 had financial concerns. Other concerns included worries about housing (19 cases), employment (12), disclosure of HIV status (9), being able to have children (4), food (4), and funeral arrangements (3).
Improving the Life of People Living With HIV
Interviewees were asked what they believed could be done to improve the life of people living with HIV (Table 14). Up to five responses were recorded from each interviewee; and 110 interviewees (77%) had at least one response. Forty‐five interviewees said that emotional or psychological support would improve the life of people living with HIV; 26 mentioned finding a cure for HIV; 20 mentioned education (either of people with or without HIV infection); 19 said improving the access to or quality of medical care; 14 said financial support; and 13 said help with housing. Others mentioned better health habits, including diet and exercise (9 cases); some said that nothing could be done (6); some mentioned religious activities (5); and some said that they were satisfied with the current services available to them (3).
Posttest Counseling of HIV‐Infected Patients
Interviewees at two sites were asked, "What are the most important parts of the counseling session when people are told that they have HIV in the clinic?" Up to five responses were recorded from each interviewee (Table 15). Of the 92 interviewees at the two sites, 66 (72%) had at least one response. Forty‐three said something about the compassion and emotional support of the counselor; 26 mentioned education or information that was important to them (mostly general education about HIV); 11 mentioned referrals that were important to them, both for medical and social services; 9 mentioned safe sex or partner notification; and 7 said that confidentiality of the session was important.
In this study, we recontacted and interviewed HIV‐infected STD clinic patients 6 to 24 months after they had been posttest counseled. One of our initial findings, and a study limitation, was that these patients are difficult to find. Despite the multiple efforts described in the methods, we were not able to locate most of the potential participants. This difficulty in recontacting HIV‐infected patients may limit the effectiveness of HIV case management by STD clinics in large metropolitan areas, although it could be easier to recontact patients after a shorter time period, particularly if they are asked in advance for permission and reliable contact information. However, based on their clinic records the interviewees were similar to those whom we did not interview, and our study may have advantages over other reports that have used HIV‐clinic‐based populations or other potentially biased recruitment methods. HIV‐infected STD clinic patients in large metropolitan areas are not representative of all HIV‐infected persons in the United States, but HIV is increasingly becoming an infection of persons similar to our study population: urban, minority heterosexuals.11
One fourth of the interviewees were not getting medical care for their HIV infection; many of them reported that this was because of denial or lack of interest. Some stated that they were never referred for care, although the STD clinic managers reported that the clinics always referred patients for medical care throughout the period when the interviewees were posttest counseled. Some indeed may not have been referred, and others may not have recalled having been referred, given the stress of learning that they were HIV‐infected. Since these interviews were performed, there have been advances in the medical treatment of HIV infection,12–14 and patients may now be more likely to seek medical care than in the past. It is difficult to compare our findings with other studies, most of which were of other populations and used different measures of access. In a study of HIV‐infected injection drug users, 62% had received HIV‐related medical services, and cost and waiting time were the most common barriers to needed services.15 Others have also identified travel time and inconvenient clinic hours as barriers9 and report that dental and mental health care needs are frequently unmet.
Financial barriers were not commonly reported by interviewees, either as a reason for not getting medical care, as a problem for those who were getting care, or specifically as a reason for not getting zidovudine, despite the fact that most interviewees had an annual income of less than $5,000 and had no medical insurance. This is probably because all three sites are in cities that receive Ryan White Comprehensive AIDS Resources Emergency (CARE) Act funding for medical care for HIV‐infected patients.16 Patients in other areas of the United States or in other countries may have different barriers to medical care than were experienced by this population, including more financial barriers.
Problems faced by people living with HIV are local issues and may change over time. To help ensure that HIV‐infected patients are getting the services they need, we suggest that clinic staff consider routinely recontacting consenting patients after posttest counseling. In addition to helping identify and address specific barriers to care, psychological issues (including denial) may be addressed, and preventive counseling messages may be reinforced. Although patient confidentiality and privacy are a concern, many interviewees in our study appreciated being recontacted by the clinic staff. In another follow‐up study in a smaller metropolitan area with recruitment over a longer period of time, investigators were able to contact 79% of their STD clinic's HIV‐infected patients. Earlier research had found that only 35% of their patients were receiving medical care. With the assistance of social workers addressing barriers including denial, distrust, and lack of transportation or child care, eventually 87% of them received medical care.17 Future research should evaluate the effectiveness of routinely recontacting HIV‐infected patients after posttest counseling in terms of patient health, social welfare, and HIV‐transmission risk behavior.
Major negative social consequences, including loss of employment and termination of main sexual partnerships, were experienced by some interviewees as a result of finding out that they were HIV‐infected. Although most of the people that they had told had been very accepting of the interviewee, most interviewees had been very selective in whom they told, probably disclosing only to people whom they thought would be accepting. Unfortunately, lack of awareness and stigmatization in the interviewees' communities may lead HIV‐infected persons not to disclose their status to others, which perpetuates the lack of awareness of the magnitude of the epidemic in their community and the stigmatization. Although main sex partners were less accepting of the interviewee, probably because of their HIV‐infection risk, most of them had been informed that they had been exposed.
The information on sexual behavior is self‐reported and retrospective and should be interpreted cautiously. There also may have been some "regression to the mean." That is, the interviewees may have been in a period of unusually high‐risk behavior, resulting in the STD that brought them to the clinic when they were initially HIV tested. However, our results support other studies that show a reduction in high‐risk behavior of HIV‐infected persons after posttest counseling.5 Most interviewees did not tell their casual partners that they were HIV‐infected. Other studies have also reported substantial nondisclosure, especially to casual sex partners.18–20 Lack of disclosure by HIV‐infected persons to casual partners may be an important prevention counseling message for the general public and indicates a significant deficiency in partner notification activities.
We found the responses to these open‐ended questions to be very revealing, providing a privileged view into the life experiences of these interviewees. Illness, death, and loss of function were prominent concerns; however, some interviewees also had either already done something positive or were planning on some positive life changes as a result of learning that they were HIV‐infected, such as improving family relationships, decreasing substance abuse, or continuing their education. In this STD‐clinic‐recruited population, changes in sexual behavior, such as not having unprotected intercourse or having fewer sex partners, were commonly reported as important changes, although this question was asked immediately after a series of questions about sexual behavior that may have prompted these responses. Most of interviewees reported an annual income of less than $5,000, and some were most concerned with basic needs‐food, clothing, and shelter. Feelings of stigmatization were common, and a call was made for increased emotional and psychological support. This was the most frequently reported way that the lives of people living with HIV could be improved. That some interviewees were most worried about non‐HIV‐related issues, such as gender identity or getting out of prison, reminds us that these are people living with but not totally defined by HIV infection.
The epidemic may be entering a new era with the availability of new, highly effective anti‐retroviral drugs. However, because of high costs, side‐effects, and the emergence of resistance, these agents may not be a panacea. The perspectives voiced here will continue to be relevant to people living with HIV for years to come, and it may be helpful for program planners to be aware of these viewpoints.
The HIV counseling and testing program has been the largest single item in the federal HIV‐prevention budget (National Center for HIV, STD, and TB Prevention; CDC). This study of HIV‐infected STD clinics patients in three large metropolitan areas suggests that HIV counseling and testing are effective at helping HIV‐infected persons. Most interviewees reported that they were receiving medical care for their HIV infection; they reported a reduction in high‐risk sex behavior; and, despite negative consequences they had experienced, most would recommend HIV testing to others.