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Thirty-Five Years Later

HIV Stigma in Washington, DC Health Care Workers

Houston, Patricia, MS*; Powell, Edwin, DAEd; Khan, Javed, MD; Sultana, Shirin, MSSW; Kwagyan, John, PhD; Kharfen, Michael, BA; Rana, Sohail, MD

Journal of the Association of Nurses in AIDS Care: May-June 2019 - Volume 30 - Issue 3 - p 344–351
doi: 10.1097/JNC.0000000000000060
Feature Article
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Stigma has negatively influenced the lives of people living with HIV since the beginning of the epidemic. It affects every facet of their lives and can cause mental health problems, loss of human rights, and barriers to care. Studies in developing countries have shown a high prevalence of HIV stigma among health care workers. Few studies have been conducted in the United States. We used a validated instrument to survey 330 health care workers in Washington, DC, a high HIV prevalence area. The goal was to obtain data to assess the severity of the problem. We found that stigmatizing beliefs and attitudes were prevalent as reflected in responses from 66% of the participants. Of clinicians surveyed, 31% reported using double gloves. Participants with stigma training had lower stigma levels, whereas older individuals and support staff were more stigmatizing. Negative attitudes affect access to care and have major public health implications.

Patricia Houston, MS, is a Project Director, Department of Pediatrics and Child Health, Howard University, Washington, DC, USA. Edwin Powell, DAEd, is an Assistant Professor, Departments of Pediatrics and Child Health and Community and Family Medicine, Howard University, Washington, DC, USA. Javed Khan, MD, is a Research Coordinator, Department of Pediatrics and Child Health, Howard University, Washington, DC, USA. Shirin Sultana, MSSW, is a PhD candidate, Howard University School of Social Work, Washington, DC, USA. John Kwagyan, PhD, is a Graduate Associate Professor and Co-Director, Biostatistics, Epidemiology & Research Design, Georgetown-Howard University Center for Clinical & Translation Science, Howard University College of Medicine, Washington, DC, USA. Michael Kharfen, BA, is the Senior Deputy Director, HIV/AIDS, Hepatitis, STD & TB Administration, DC Department of Health, Washington, DC, USA. Sohail Rana, MD, is a Professor, Department of Pediatrics and Child Health, Howard University, Washington, DC, USA.

Corresponding author: Patricia Houston, e-mail: phouston@howard.edu

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

HIV-related stigma has been defined as a devaluing and shaming attitude or behavior toward people living with HIV (PLWH; Herek & Capitanio, 1999). HIV-related stigma can be categorized into enacted stigma (discriminatory behaviors from others), experienced or perceived stigma (prejudicial, blaming, or shaming attitude as felt by the stigmatized individual—sometimes grouped with enacted stigma), anticipated stigma (expectation of being stigmatized), and internalized stigma (feelings of shame or internal validation of stigma about oneself; Stangl, Lloyd, Brady, Holland, & Baral, 2013). A number of drivers and facilitators of stigma have been identified, such as fear, prejudice, and stereotypes, that fuel and sustain negative attitudes (Stangl et al., 2013).

Although stigma can affect every facet of life for PLWH, nowhere is it more painful or has more serious impact than when it is enacted in the health care setting. Two U.S. studies found that PLWH experience discrimination in the form of denial of care, negative attitudes, and violation of privacy by health care workers (HCW; Schuster et al., 2005; Sears, Cooper, Fariba, Younai, & Donohoe, 2012). In a qualitative review of HIV stigma, Chambers et al. (2015) identified incidents in health settings that lead to stigmatization, including segregation of PLWH, confidentiality violations such as tagging charts, visible provider nervousness, excessive precautions such as double gloving, social judgments and blaming or ignoring PLWH, and denying services. Donnelly et al. (2016) reported that the fear of marginalization and discrimination among PLWH has perpetuated feelings of worthlessness and subsequent disengagement from care. In one study, 27% of PLWH developed post-traumatic stress disorder following an HIV-stigmatizing event (Adewuya et al., 2009). Other studies have pointed to the direct impact stigma has on self-esteem and mental health (Fife & Wright, 2000; Rueda et al., 2016). Anxiety, depression, suicidal ideation, emotional health, psychological well-being, life-satisfaction, and quality of life have all been reported to be negatively impacted by stigma (Chambers et al., 2015; Wagner et al., 2010).

Stigma also has a serious adverse impact on health outcomes for HIV (Rueda et al., 2016). It affects all components of the continuum of HIV care: diagnosis, linkage, engagement, and complete viral suppression. The Centers for Disease Control and Prevention (2017b) has estimated that 85% of all PLWH have been diagnosed, with 62% having received initial care, and only 48% being retained in care. About half of PLWH (59.8%) have achieved the desirable outcome of an undetectable viral load (Centers for Disease Control and Prevention, 2018). Although there has been a modest decline in the number of new infections, progress has not been uniform, and diagnoses have increased in some groups (Centers for Disease Control and Prevention, 2017a; District of Columbia Department of Health, 2018). A significant number of studies from developing countries and a few in the United States point to stigma as a major barrier to all domains of the HIV cascade of care (Ekstrand, Ramakrishna, Bharat, & Heylen, 2013; King, Maman, Bowling, Moracco, & Dudina, 2013; Kinsler, Wong, Sayles, Davis, & Cunningham, 2007; Li, Comulada, Wu, Ding, & Zhu, 2013; Stringer et al., 2016; Zarei, Joulaei, Darabi, & Fararouei, 2015). A delay in seeking care, disengagement from care, and poor adherence to antiretroviral therapy have all been linked to stigma (Kinsler et al., 2007; Rao et al., 2012). Stigmatizing attitudes and beliefs among HCW have the greatest potential for negative impact on linkage to and engagement in care (Nyblade et al., 2018).

Most of the published work on HIV-related stigma in health care settings has been with providers from countries other than the United States. Studies in China, India, Russia, the Caribbean, and other countries have shown high levels of provider stigma (Ekstrand et al., 2013; King et al., 2013; Li et al., 2013; Zarei et al., 2015). Little published data of HIV-related stigma is available from North American health care providers (Stringer et al., 2016). We assessed the prevalence of stigma among HCW in an inner-city teaching hospital in the District of Columbia, a high HIV prevalence area, using a previously validated stigma index survey for HCW. This study obtains data to assess the magnitude of stigma and discrimination in U.S. HCW, allowing for future development of evidence-based interventions.

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Methods

All employees and health professions students older than 18 years, with some degree of patient contact (physical and/or verbal) were eligible for our study. Administrative staff with no patient interactions, such as business office staff, were excluded. The study was approved by the Howard University Institutional Review Board, and a preamble was used to inform participants about the study. Trained research assistants conducted the surveys in person in English. Survey respondents filled out the questionnaires using a paper and pencil format from May 2015 to March 2016. Convenience sampling was used by approaching HCW in high traffic areas, such as faculty lounges, outside the cafeteria, clinics, and emergency rooms. A semiprivate setting was identified by the surveyor to maintain confidentiality of responses. Efforts were made to ensure inclusion of all segments of HCW in the hospital. Our target was that approximately 50% of the respondents would be physicians (professionals who directly impact care). A significant number of medical students, dentists, nurses, social workers, medical assistants, other allied health professionals, receptionists, cleaning staff, and food service staff were also included (Table 1). A $10 USD gift card was given to each participant as an incentive for completing the survey. Demographic and specialty information were also collected. Each participant was assigned an identification code number, and no personal identifying information was collected.

Table 1

Table 1

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Survey Instrument

An internationally validated survey, “Measuring HIV Stigma and Discrimination among Health Facility Staff: Standardized Brief Questionnaire,” developed and field tested by the Health Policy Project (Nyblade et al., 2013) was administered to 330 HCW, in an unmodified format. The questionnaire was composed of 18 questions that included background information, infection control, health facility environment, health facility policies, and opinions about PLWH. Testing on the attitude scale by Nyblade et al. (2013) yielded a combined alpha of 0.78. The majority of the questionnaire items were formatted as a 4-point Likert scale. The instrument measured enacted stigma and three drivers of stigma within health facilities: (a) worry about HIV transmission, (b) attitudes toward PLWH, and (c) health facility environment.

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Data Analysis

Data were entered into the RedCAP database by research staff and reviewed weekly to resolve errors such as invalid codes or missing entries. Descriptive and inferential statistical data analyses were performed using SPSS software (i.e., frequency distribution, cross-tabs). For example, measures of health facility and work environment, observed stigma and opinions about PLWH, enacted stigma, and stigma toward pregnant women living with HIV were calculated from the corresponding questions. Subgroup analyses were performed for provider type, gender, race, and age. HCW were grouped into four categories: (a) clinician/direct care providers (physicians, nurse practitioners, physician assistants, and dentists); (b) allied and other health professionals (nurses, medical technicians, social workers, and pharmacists); (c) students (medical, dental, and allied health); and (d) support staff (medical assistants, receptionists, cleaning, and food staff). Comparisons of frequencies between different groups on selected key questions were performed using the Pearson chi-square test. In addition, we fitted logistic regression models to examine the independence of gender, age, provider type, and race in predicting the odds of stigmatizing responses separately on four selected questions.

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Results

Of the 330 participants, 76% were Black, including African/Caribbean and African American, which mirrored the demographics of the hospital staff. Sixty-nine percent were female, and the mean age was 37 years. Physicians (attending and residents) made up the largest proportion of the sample (35%), followed by medical assistants/medical receptionists (15%), and medical students (14%). For statistical analyses, physicians, dentists, physician assistants, and nurse practitioners were grouped together as clinicians. Refusal rates were low, at approximately 10%. The main reasons for refusal were, no time and lack of interest. Demographic information is presented in Tables 1 and 2 and contains results from analysis of selected key questions.

Table 2

Table 2

Fear of getting HIV is a known driver of negative attitudes and behavior toward PLWH. In our sample, 21.3% would be worried about touching the clothing or bedding of PLWH. When asked if they wore double gloves when caring for PLWH, of those who wear gloves for their jobs, 23.7% of all respondents answered yes, including 31% of clinicians. Respondents had the option of answering not applicable if their jobs did not entail the use of gloves. Most of these individuals were not in surgical specialties. In addition, 17.6% felt that PLWH did not care if they infected other people; 37.8% said that people get infected with HIV because they engage in irresponsible behaviors; 23.1% agreed that PLWH had many sex partners, and 9.2% responded positively to the statement that PLWH should be ashamed. When asked if women with HIV should have babies, 23.7% disagreed. When asked about providing care to sex workers, drug users, and men who have sex with men, 16% of respondents preferred not to provide care to patients in at least one of these groups.

Table 3 presents subgroup analyses by provider type, age, gender, and race. Comparisons between different groups were performed using the Pearson chi-square test. We focused on four sentinel stigmatizing questions for analyses: (a) use of double gloves, (b) individuals with HIV do not care if they infect others, (c) persons with HIV engage in irresponsible behaviors, and (d) HIV-infected women should be allowed to have babies. Sixty-six percent answered at least one of these questions in a negative and stigmatizing way, with 28.5% responding to two or more questions negatively. When the sample was stratified by age, results showed that older persons (>35 years) were more likely to agree that PLWH did not care if they infected others (p = .02) and disagreed that women living with HIV should be allowed to have babies (p = .03). When stratified by gender, results showed male subjects more likely to agree that PLWH engaged in irresponsible behaviors (p < .01). Clinicians (31%) were most likely to report use of double gloves. Support staff were significantly more likely and students least likely to agree with the statement, “PLWH do not care if they infected others” (p = .02). Support staff were almost twice as likely to disagree that women should be allowed to have babies, at 43.5% (p = .03). Those who reported that they had received HIV stigma and discrimination training were more likely to disagree that PLWH had irresponsible behaviors (p = .02) and were less likely to wear double gloves (p = .04). Stigmatizing attitudes did not vary based on the number of PLWH under the care of the provider.

Table 3

Table 3

In logistic regression analyses, nurses (RN/LPN) were separated into a separate provider category; results revealed that, compared with physicians/nurse practitioners/physician assistants/dentists (odds ratio [OR] = 0.325; confidence interval [CI] = 0.119–0.891; p = .024) and allied health personnel (OR = 0.245; CI = 0.078–0.767; p = .016), nurses (RN/LPN) were significantly less likely to agree that women living with HIV should be allowed to have babies. In the model that was adjusted for gender, age, provider type, and race, provider type was not significant for wearing double gloves, belief that PLWH intentionally infect others, and belief that PLWH engage in irresponsible behavior. The significance of male gender (OR = 0.373; CI = 0.216–0.645; p < .001) on irresponsible behavior remained in the adjusted model. Race was not a significant factor in any of the analysis.

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Discussion

Negative attitudes toward PLWH were high in our study and closely mirrored responses in the Nyblade et al. (2013) international study conducted in six countries, using the validated instrument that we used. As in our study, Nyblade et al. (2013) reported on approximately 300 respondents in each country, with demographics varying by country. For example, when asked if people get infected with HIV because they engage in irresponsible behaviors, 38.1% of international respondents agreed, compared with 37.8% in our study. For the question asking if they would be worried if they touched the clothing or bedding of PLWH, 23.3% of international respondents were worried compared with 21.3% in our sample. Studies worldwide have shown a high prevalence of stigmatizing beliefs and behaviors among HCW (Ekstrand et al. 2013; King et al., 2013; Li et al., 2013; Zarei et al., 2015). A 2013 cross-sectional study in India included interviews that revealed high levels of stigma reported in all groups of HCW, including, for example, a willingness to prohibit women living with HIV from having children (55%–80%) and stating that people who acquired HIV through sex or drugs “got what they deserved” (50%–83%; Ekstrand et al., 2013). Li et al. (2013) collected data from 40 county-level hospitals in China, where negative attitudes of providers toward PLWH were inversely associated with PLWH satisfaction with care.

We could find little published data regarding stigmatizing attitudes and behavior of HCW in the United States. A recent review concluded that assessment of HIV stigma among providers was crucial to understanding how this phenomenon impacted health outcomes and could inform interventions (Marshall, Brewington, Allison, Haynes, & Zaller, 2017). A recent study of stigmatizing attitudes in providers in the Deep South region of the United States, using the same survey we used, also showed high levels of stigma (Stringer et al., 2016). They found approximately 90% of respondents showing at least one stigmatizing attitude, with White race, male gender, and Protestant religion being risk factors for increased stigma (Stringer et al., 2016). Our survey included a greater percentage of physicians (35%) than that of Stringer et al. (2016). Most of those surveyed by us were African American HCW, whereas the majority of those surveyed in the Stringer et al. (2016) study were Caucasian. Our study also differed by being in an inner-city teaching hospital at a minority institution. However, we still found high levels of stigmatizing attitudes, even in a high HIV prevalence, urban, and progressive region, with the majority of respondents from minority populations. Stigma was present across all segments of the health care community. Going forward, it is important to conduct similar studies in different regions of the country to assess regional differences.

Several recent qualitative and quantitative studies, including studies with PLWH, reported that the quality of interaction at the time of diagnosis and subsequently between providers and PLWH under their care had a serious impact on future health seeking behavior (Chambers et al., 2015; Donnelly et al., 2016; Eaton et al., 2015; Kinsler et al., 2007). The consequences of stigma in health care settings can be health compromising and life threatening for PLWH. A person's sense of self-respect, dignity, and identity are essential to healing. Internalized stigma and the associated guilt and shame often lead to an inability to engage a support system and lack of disclosure to sexual partners, explaining why prevention efforts to decrease new cases have been less than successful (Joint United Nations Programme on HIV/AIDS, 2014; Valdiserri, 2002). Overlapping stigmas of race, sexual orientation, sex work, and intravenous drug use, further complicate the picture (Tomaszewski, 2012). Bias against certain groups was evident in our survey population, with a significant number of respondents preferring not to provide services to people who inject illegal drugs (13.5%), sex workers (11.2%), and men who have sex with men (9.1%).

Stigmatizing beliefs and behaviors by HCW toward PLWH lead to mistrust, which may be a reason why many PLWH are not retained in care (Rana & Parikh, 2014). Fear of mistreatment and lack of trust are contagious and can spread quickly and easily among communities, affecting willingness to get tested, linkage to care, and staying engaged in care (Eaton et al., 2015). Many PLWH have been exposed to HCW with insensitive behaviors and inaccurate beliefs that are diametrically opposed to the empathy that patients expect in care settings (Donnelly et al., 2016). For example, in our sample, more than 30% of respondents had heard other HCW talk badly about people living with or thought to be living with HIV. A person with an illness such as HIV encounters many HCW in one visit. A negative experience with just one worker (e.g., observing the use of double gloves when it is not warranted) can undo positive experiences with other workers and have lasting effects. Such an experience would create barriers to HIV prevention as well, thus marginalizing or shaming PLWH or high-risk individuals. Ideally, we envision health care as a sanctuary with acceptance and empathy for the broken, marginalized, and vulnerable. The lack of these qualities in a large percentage of the health care workforce is a major deterrent for PLWH to seek care.

Studies by researchers in the Horizons project have suggested that training can decrease provider stigma (Nyblade et al., 2013; Nyblade, Stangl, Weiss, & Ashburn, 2009; Pulerwitz, Michaelis, Weiss, Brown, & Mahendra, 2010). Participants in our study who reported HIV stigma or discrimination training showed lower levels of stigma on several measures. Based on our study results, health care providers need additional training to increase stigma awareness, educate them about the impact of stigma on PLWH, and teach behavior modification. Effective tools need to be developed to reach all providers, especially older clinicians, nurses, and those in support services, groups that displayed higher levels of stigma in our study. Many challenges and gaps remain in developing effective stigma-reduction strategies. Prevention and education activities can be effective in changing the attitudes and behaviors of HCW (Kingori et al., 2012; Nyblade et al., 2013).

Our study had limitations. These include selection bias due to convenience sampling, desirability bias in survey responses, and the single hospital setting. Our subjects were drawn from an urban area, serving a high HIV prevalence population. Our method of approaching HCW in high-traffic areas, such as faculty lounges, outside the cafeteria, clinics, and emergency rooms, and targeting all areas of the hospital, was intended to decrease the effects of sampling bias. The use of double gloves in a situation where it was warranted could have slightly confounded the data in that area. Despite these limitations, we feel that the data reflected current views among HCW in a particular urban setting in the United States.

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Conclusion

More than 35 years after AIDS was described, stigma persists as a huge challenge, and it continues to negatively impact the quality of life and well-being of PLWH and their access to services (Chambers et al., 2015; Ki-moon, 2008; Nyblade et al., 2009; Pharris et al., 2011). The high prevalence of stigma in our data warrants funding for additional stigma research and nationwide monitoring. There is a critical need to study social constructs that sustain HIV stigma. A multipronged approach that includes ongoing monitoring of HIV stigma combined with a multimodal intervention to combat stigma that combines education, advocacy, support, and building resilience is needed (Chambers et al., 2015; Joint United Nations Programme on HIV/AIDS, 2014). Stigma remains one of the biggest barriers to testing, treatment, and retention in care for HIV and will remain so unless something is done to bring about change.

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Disclosures

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

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Key Considerations

  • Health care providers in the United States continue to have a high prevalence of stigmatizing attitudes toward PLWH.
  • Training can reduce these negative attitudes.
  • Continued surveillance of stigmatizing attitudes in different regions of the country is needed.
  • Goals for reducing negative attitudes toward PLWH should be an essential part of HIV national policy.
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Acknowledgments

This project was made possible by funding from the District of Columbia Department of Health, HAHSTA branch (CW31656, PI: Sohail Rana, MD). This project was supported (in part) by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number G12MD007597 (PIs: Thomas Mellman, MD and Joseph Verbalis, MD). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors would also like to thank Caroline Reed and Beatrice Charles for their efforts in recruitment for this study.

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Keywords:

health care workers; HIV; stigma; survey

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