The sample consisted of 33 PLWH and 54 PNLWH. The average age for PLWH and PNLWH were 50 years (SD=13) and 46 years (SD=16), respectively. Most participants were female (54%), non-Hispanic (80%), White (69%), and lived in Florida (87%). Themes that encapsulate experiences and examples of HIV-related stigma and recommendations to reduce stigma in Florida and Georgia are summarized in Table 2. Furthermore, we incorporated our findings into a model of the SEM to address HIV-related stigma, illustrated in Figure 1.
Experiences and Examples of HIV-Related Stigma
Individual
Knowledge
Sentiments expressed by participants included perceptions of HIV transmission. For example, one person shared that, “many people still don’t know how HIV is spread and treat [people living with] HIV as if they have a contagious disease”.
Fear
Participants tended to describe HIV-related stigma as a fear to disclose status. One person wrote, “...fears of disclosing status because of potential violence”, another said, “people are afraid that if people find out they have HIV they will suffer negative consequences such as isolation; loss of job or housing; physical harm”. Participants also described fears related to risk perceptions, “fear of contracting HIV simply by being close to an HIV+ person…”
Internalization
Participants brought up similar examples of internalization, including, “HIV-related stigma is the stigma that we put upon ourselves. We have to accept ourselves as who we are with HIV first.”
Interpersonal
Social Network
Participants described instances of family members and friends not wanting to share items such as food or utensils with a PLWH. One respondent remarked, “families are still giving people who are HIV+ different things to eat on”. Two PLWH also brought up the concept of dating being a source of HIV-related stigma, for example, “I've seen people still afraid to date someone HIV+”.
Other instances involved rejection by people close to them. Another example was, “an older person who has been going to her church for many years and eventually she felt comfortable enough to share her diagnosis with one of her closest friends. Soon after that the friend stopped coming to her house and stop hugging her and uses hand sanitizer after she awkwardly shakes her hand.”
Community
Judgements
Judgements was the most commonly cited example of HIV-related stigma in our sample. Many responses involved stereotyping: “that the person afflicted was promiscuous or on drugs” and “only gay people get HIV”, religion: “you got what you deserved, God’s wrath on gays”, and more general negative opinions: “prejudice against people infected with HIV in all facets of life” and, “the negative and often hurtful attitudes and ideas that people have about those of us living with HIV.”
Judgments came mostly from interactions with others. Only one person (without HIV) described media as an example of HIV-related stigma, writing, “[HIV medication] commercial. Although it depicts multiple races, it still insinuates HIV is a white, gay man's disease.”
Discrimination
Responses ranged from avoidance to violence. Examples included, “…hate crimes against people living with HIV and AIDS”, “not allowing an individual to participate in sports events”, and “people avoiding, not talking and not wanting to be with you.”
Institutional
Competent Providers
Examples described providers who were not sufficiently able to treat PLWH. There was not one predominant provider type in which this occurred. One participant shared an experience that exemplified competency in providers in which they described as, “an orthopedic surgeon saying he cannot perform a total hip replacement on me because he has never done one on a person with my condition.” Another person described their experience as someone who works with PLWH, “When I was giving birth the nurse had to get another person to start my IV because she couldn't get it started, I heard her down the hall telling the other nurse that I was high-risk because I work in the HIV department.”
Healthcare Services
Participants described healthcare services as an example of HIV-related stigma, but one person described the setup of a health department: “…having to walk into a county health facility to get my meds at a special window in a crowded room full of people.”
Structural
Systemic Barriers
Participants discussed HIV-criminalization laws, citing the, “increased penalties in the ‘justice system’…levied at people who are HIV positive”. Multiple respondents also mentioned challenges with our laws, such as, “.... I would also like to see Florida modernize its HIV-related and sex work laws. I am excited that syringe exchange may finally be an option in Florida counties outside of Miami-Dade sometime this year.”
Strategies to Reduce HIV-related Stigma
Individual
Knowledge
Participants expressed that informing individuals about HIV transmission, treatment, and prevention could be one strategy to reduce HIV-related stigma. For example, one participant noted, “Explaining that you're unable to catch HIV - through hugs, handshakes, or holding hands.”
PLWH specifically noted that telling their own stories and learning from peers living with HIV would increase knowledge and reduce stigma. One respondent stated, “Knowing an HIV positive individual or friend... Get some knowledge!! Always correct people especially kids who are mocking or joking about the situation”
Fear
Two PNLWH remarked fear needed to be addressed to dispel misinformation about HIV. One person described, “Open communication to continue to assist with the fear associated with HIV. Many people have knowledge but somehow do not believe all of it to be true.” No PLWH in our sample commented that fear was an issue.
Interpersonal
Social Network
Several participants believed we should focus our attention on families. For example, “We are a tight knit community that places emphasis on our family units. The moment the older generation opens up and changes their minds about their attitudes towards the disease the easier it will be for the younger generations to be open and feel comfortable getting tested and talking about HIV”.
Community
Judgements
Respondents generally described that a barrier to HIV-related stigma interventions refers to judgement from and within specific communities. For example, “Reducing HIV-related stigma needs to focus on the religious community where the language used by religious leaders need to be more inclusive, so people don't keep on perpetuating hate language in their homes.”
Media was also described as a mode of decreasing judgments. Mediums such as diverse websites, commercials, and billboards would be useful to increase awareness about HIV. Respondents detailed, “Increasing your voice, being seen by way of billboards, brochures at every medical facility.......depicting all kinds of people old, young, white, black, brown, Asian, the disabled in brochures and prevention messages HIV does not discriminate anyone.”
Community Organizations
Respondents agreed that inclusive, respectful organizations such as peer-led community-based organizations as well as government-funded agencies would decrease HIV-related stigma. “Agencies that make an effort to let people know they treat all persons with respect and dignity, and then actually do so.”
Norms
Participants noted that HIV should be normalized as a chronic illness where people could feel comfortable disclosing their status or get tested without being judged, mentioning:
“Messaging here is difficult but not impossible. Too many people still think HIV is a death sentence. It isn't. I may very well outlive many of my HIV negative friends. HIV is a treatable, manageable condition. We need to get that out there. At the same time, we don't want people to let their guard down too much. HIV is still serious”.
PLWH also noted this approach could normalize HIV if peers living with HIV could tell their story.
Institutional
Competent Providers
Respondents also explained how HIV-related stigma could be perpetuated among providers. Although the type of provider was not specified, participants tended to agreed that support, education, and communication could be improved, in other words, “HIV providers and Case Managers provide education using simple terms, in everyday words that people can understand and empathize rather than sympathize.”
Healthcare Services
Respondents agreed that resources such as increased testing, providers, and healthcare centers are needed. Respondents noted that facilities should not be identified as HIV-specific, rather they should provide a gamut of services. Specifically, respondents commented, “Create a safe non-descriptive clinic that is not just for PLWH so they can access care without feeling singled out.”
Structural
Systemic Barriers
Participants discussed criminalization laws, discriminatory practices, and policies that could increase testing efforts, citing, “For example, not having a patient sign special consent forms saying they want HIV testing” and, “Modernize the outdated, unscientific, discriminatory HIV specific laws.” PLWH specifically mentioned engaging communities as a whole such as, “….Allow them [people living with HIV] to sit at the decision-making table.”
Language
PLWH described language as meaningful, stating, “People or patient first language being used to take the impact of harm from the intent behind describing people living with HIV.”
Education
Participants often cited education focusing on HIV transmission, particularly geared towards school-aged children, “For my state/city, I think it could be helpful if we provided more information to the youth about HIV, in a conducive way. Implement a course on it.” One respondent noted, “...Renewed community HIV/AIDS education prevention efforts targeting high risk communities utilizing real leaders in the community.”
Several Approaches
It should be noted that a couple of respondents indicated that strategies to reduce HIV-related stigma should not be a single approach citing, “Any strategy to overcome HIV-related stigma must be multi-pronged, it must involve policy, media, specific education, and health services integration”.