ABSTRACT.
Stigma affects adversely the HIV prevention continuum and care cascade. Our population-based, mixed-methods study aimed to assess women’s perceived HIV stigma and discriminatory attitudes, and their relation with HIV testing in a high-prevalence area in Belize. This population-representing household survey in the mixed urban–rural setting of Stann Creek District, Belize, collected data from 236 women age 15 to 49 years. We analyzed HIV testing rates, HIV prevention and transmission knowledge, perceived stigma manifestations, and participant attitudes. Concurrently, a nested qualitative component of study cognitive interviews with a purposive sample of 23 women explored HIV stigma in their community. A vast majority of women (96%) perceived HIV stigma manifestations in their communities as pervasive and a deterrent to people from testing. Discriminatory attitudes (16% believe children with HIV should not attend school) and HIV misconceptions (53% fear acquiring HIV through saliva) tended to be more common in nonurban areas and among women with less formal education. Stigma persisted even with high HIV testing rates among women. Qualitative findings triangulated survey results and, taken together, suggest that prejudices held against people with HIV led to avoidance of HIV preventive measures such as testing and status disclosure, fueled by a strong distrust of the medical care system regarding confidentiality of HIV test results. Misconceptions about HIV and stigmatizing attitudes remain pervasive among women in Stann Creek, Belize. Health literacy, stigma interventions, and expansion of routine confidential testing to include men are needed to address the HIV and stigma syndemic in Belize.
INTRODUCTION
Although substantial progress has been achieved in Latin America in increasing HIV awareness and treatment capacity, the Caribbean has remained the region with the second highest HIV prevalence after sub-Saharan Africa.1,2 Belize’s HIV prevalence rate of 1.9% is among the highest in Latin America and the Caribbean.3 This upper middle-income country is bordered by Mexico to the north, Guatemala to the west, and the Caribbean Sea to the east. Divided into six administrative districts, Belize is ethnically diverse and is the regions only predominantly English-speaking country. The country’s population of approximately 400,000 is made up mostly of Mestizos (53%), Creoles (26%), and ethnic minorities such as Maya (11%), Garifuna (6%), and others.4 The Stann Creek District is home to most of Belize’s Garifunas who, originally from Honduras, are a mixed ethnicity of Afro-Caribbean, indigenous Caribbean, and indigenous Arawak people.5 Although Belize’s generalized HIV epidemic affects both urban and rural populations, the Garifuna ethnic group has experienced particularly high HIV-positive rates.6
The first case of AIDS in Belize was diagnosed in 1986, and HIV/AIDS has since become one of the country’s leading causes of death.4,7 Historically, Belize’s 2015 national HIV surveillance report8 identified challenges concerning late diagnosis and treatment adherence, and documented an increase in HIV incidence among adults. Throughout the global HIV epidemic, stigma and the social exclusion of people living with HIV have been a major barrier to achieving the HIV prevention continuum, leading to the challenges in HIV diagnosis and treatment that Belize has experienced for the past three decades.
Stigma represents a discrediting mark or attribute that leads to a “disqualification of social acceptance”, (p. 3) of individuals in an undesirable social category.9 Stigmatization, the negative labeling and separation of an “out” group, is based on a power inequity that leads to status loss and discrimination.10 Stigmatizing attitudes are often founded in prejudice and misinformation from various sources.11 Enacted stigma toward people with HIV (or those who are believed to live with HIV) is referred to as discrimination, when unfair and unjust actions based on a socially undesired trait conflict with existing laws or rules.12
Stigma from HIV and the related social rejection and isolation place a substantial burden on affected people, and impact public health negatively.3 Stigma creates a major barrier to prevention and health care for HIV, with adverse effects on overall quality of life, and mental health and well-being.5,13 Stigma and related care avoidance inhibit access to health and health-care use,14 and are a major impediment to HIV testing and prevention efforts.15 Although public stigma manifests stigmatizing and discriminatory attitudes in the general population, internalized stigma experiences relate to the endorsement of these public attitudes by affected people.16 Public and internalized stigma are interrelated. Displaying discriminatory attitudes toward people with HIV can be a source and reinforcement of internalized stigma, or the endorsement of stigmatizing attitudes by affected people.
Within the Caribbean region, PANCAP, the regional initiative for HIV elimination, cites the key role of stigma reduction in HIV prevention, but notes its persistence despite policy changes in countries.17 There is a dearth of population-based studies in the Caribbean region. A prior population-based study conducted in Jamaica18 examined attitudes to HIV and testing, but not potential effects of stigma on testing. The 2013 HIV Stigma Index Survey examining how people living with HIV experience HIV stigma found that, in Belize, although most people living with HIV did not feel stigmatized in social, religious, or family settings, many reported being discriminated against because of their HIV status. Many were ashamed and felt guilty of their diagnosis and fearful of gossip, more than one third (38%) had to move after they were diagnosed with HIV, and almost two thirds (64%) lost their job because of their HIV-positive status.19 The latest HIV Stigma Index survey conducted in Belize in 2019 summarized that, although fewer people living with HIV have experienced discrimination related to their HIV status, anticipated stigma led them to avoid social interactions.3
Compounded by structural, social, and biological factors, adolescent girls and women are at increased risk for HIV transmission compared with males. Adolescent girls and women experience greater vulnerability with regard to violence, less control in relationships, less educational opportunities, and other factors that limit their ability to effect HIV prevention.20 The most prevalent barriers to care for women with HIV has been perceived HIV stigma,21 but little research has been done in Latin America or the Caribbean on the role of stigma in HIV testing of women—a key population to get to zero HIV.22
Thus, a better understanding of stigma perceived by women in the general population is needed to reduce the public’s stigmatizing attitudes as barriers to HIV prevention and care. Although people living with HIV in Belize have been found commonly to internalize stigma, the stigmatizing attitudes held by women in the general public and perceived stigma regarding HIV have been less studied.
The aim of this population-based, mixed-methods study was to assess women’s HIV knowledge, perceived stigma, and its relation to HIV testing behaviors among women residing in urban and rural Stann Creek District. This urban and rural district has reported the highest HIV incidence and related mortality rates in Belize, after the capital city’s urban district.8 We collected data in a household survey representative of the entire district. Using related qualitative interview data from a subset of survey respondents, we aimed to explore stigma perceptions and stigmatizing attitudes in this population.
MATERIALS AND METHODS
We analyzed quantitative and qualitative data collected in Stann Creek District, Belize, from November to December 2015. Prior to collecting data, interviewers elicited informed consent by explaining the objectives and content of the study, and noting voluntary participation that respondents could revoke at any time during the data collection process. Participants then provided verbal consent to begin the interview or declined to participate. Personal identifiers were not collected.
Quantitative methods.
Household survey.
We implemented a representative household survey of the Stann Creek District, Belize, using a two-stage probability design. From the Belize census sampling frame, we selected at random 20 census enumeration areas; within these, we selected 30 households using systematic sampling in Stann Creek.
The survey collected data from women age 15 to 49 years using a specific questionnaire in which women provided data on themselves. We trained two teams of female interviewers on delivering the questionnaires and collecting data using Windows tablets, which uploaded data to a cloud storage system. After the survey, we calculated sample weights to take into account nonresponses and applied them during analysis. The survey achieved a response rate of 67%.
Measures.
We used the English version of the multiple indicator cluster survey 6 (MICS-6) data collection tool, a global standard for maternal and child health developed by UNICEF, which has been validated in multiple countries.23 We chose this questionnaire for its rigorous methodology, which included topics such as women’s demographic characteristics, and antenatal, delivery, and postnatal care information. We also measured lifetime HIV test receipt.
We measured HIV-related attitudes and stigma perceptions using a previously developed and validated instrument.24 These questions were developed by a working group of UNICEF and WHO HIV experts, and was validated in Belize as part of this study. For the items regarding HIV knowledge, perceptions, and attitudes, response options were yes, no, or I do not know. We calculated the percentage of women who report negative individual- and population-level manifestations of HIV-related stigma, the percentage of those who reported fear of HIV infection through noninvasive contact with a person living with HIV, and the percentage of those who reported discriminatory attitudes toward people living with HIV.
Qualitative methods.
Cognitive interviews with participants.
From the household survey sample, we selected a purposive sample of 23 women age 15 to 49 years with whom we conducted cognitive interviews related to the survey questions. We assessed participants’ stigma question comprehension and response processes, and further explored the issues examined through the survey questionnaire.
We trained household survey interviewers to recruit respondents purposively who were insightful about particular topics and who were willing to elaborate on their experiences. All participants provided informed consent. Interview topics and questions were organized in a semistructured interview guide, implemented by an experienced qualitative researcher (K. L.), audio-recorded, and transcribed verbatim. Results are presented using verbatim quotations, along with the woman’s age and the location of the interview in parentheses.
Focus groups of interviewers.
At the conclusion of the household survey and in-depth interviews, we conducted two focus groups with interviewers, one with each survey team. Our semistructured focus group guide examined issues that respondents cited during their exchanges with the interviewers, which provides additional insight on how respondents view particular topics. The focus group discussions were moderated by a qualitative researcher assisted by a note-taker who documented detailed discussion points and quotations.
Analyses.
We analyzed the household survey data using univariate and bivariate statistics with STATA 14 (StataCorp, College Station, TX), applying the sample weights. We computed descriptive statistics overall and by HIV testing status.
For the qualitative analysis (conducted by K. L. and K. Y.), we undertook a thematic analysis25 that involved both inductive and deductive reasoning. We reviewed all interview transcripts and focus groups notes, and developed a coding frame using the Health Stigma and Discrimination Framework, which also guided survey item development.16 We devised a deductive codebook, building on the themes in the survey and assessed using the interview guide. Using this codebook, we coded all interview text data with dedicated software NViVo 11 (Lumivero, Burlington, MA). After an initial round of coding, we revised codes in subsequent analytic cycles and organized them into broader domains that we related to the survey results in an inductive approach. We used consensual coding, for which we discussed our coding approaches of the same interviews, then coded separately.26
Patient and public involvement.
This population-based study did not involve patients; all participants were community members. We involved community members in the pilot test of the MICS-6 survey, which provided the data for our study. We explored community members’ priorities, experiences, and preferences through qualitative interviews conducted as part of the MICS-6 pilot test in Stann Creek District, in which HIV stigma and testing emerged as relevant topics. We designed the study; community members contributed to participant recruitment. All quantitative survey data were collected by community members who were not participants. Qualitative interviews were facilitated by community members and conducted by K. L. Our aggregated data will be disseminated to the Stann Creek District community via the UNICEF Belize Country Office and the Statistical Institute of Belize. Results will be made available specifically to community-based nongovernmental organization serving the stigmatized populations of people who inject drugs and people with HIV.
RESULTS
Survey findings.
Table 1 shows that the sample was approximately half urban, with the majority of women having secondary or higher education (60%). Women in the sample were of various ethnicities, representative of those living in the district (see Table 1 for details).
Table 1.
Sample participant characteristics (N = 236)
| Characteristic | % |
|---|---|
| Area | |
| Urban | 47.6 |
| Rural | 52.4 |
| Age, years | |
| 15–24 | 42.9 |
| 25–34 | 29.8 |
| 35–49 | 27.3 |
| Education | |
| None/primary | 40.3 |
| Secondary or higher | 59.7 |
| Ethnicity of household head | |
| Creole | 18.2 |
| Maya | 17.1 |
| Mestizo/Spanish/Latino | 27.8 |
| Garifuna | 31.7 |
| Other/don’t know/missing | 5.2 |
| Discriminatory attitude | |
| Would not buy fresh vegetables from shopkeeper with HIV | 30.9 |
| Children living with HIV should not be allowed to attend school with children who do not have HIV | 16.3 |
| Ashamed if someone in family had HIV | 16.4 |
| Fear of getting HIV if in contact with the saliva of a person living with HIV | 52.9 |
| Any discriminatory attitude | 69.4 |
| Public perception of stigma | |
| People talk badly about people living with HIV | 86.8 |
| People living with HIV lose the respect of other people | 70.2 |
| People hesitate to take an HIV test because they are afraid of how other people will react | 89.4 |
| Any public perception of stigma | 95.9 |
Prevalence of discriminatory attitudes ranged from 16% (belief that children with HIV should not attend school) to 53% (fear of acquiring HIV through saliva).
Public perceptions of stigma were common, ranging from 70% (belief that having HIV causes a loss of respect for the person) to 89% (belief that people hesitate to test for fear of how others will react). A composite variable of any public perception of stigma showed that almost all women endorsed any stigmatizing attitude held by the public (96%).
Incorrect knowledge of HIV prevention and transmission was common in Stann Creek. Approximately one in five women did not identify consistent condom use as preventing HIV transmission, and the same proportion knew that having only one partner could reduce HIV infection (Table 2). A small percentage of women believed that HIV could be spread by mosquito bites (10%) and fewer thought that transmission was possible by sharing food or by supernatural means (< 5% in each case). Less-educated women were significantly more likely to hold these beliefs.
Table 2.
Knowledge and misconceptions about HIV among women age 15 to 49 years (N = 236)
| Characteristic | Percentage Who Know Transmission Can Be Prevented By | Percentage Who Know That a Healthy-Looking Person Can be HIV Positive | Percentage Who Believe HIV Can Be Transmitted by: | No. of Women Age 15–40 Years Old | |||
|---|---|---|---|---|---|---|---|
| Having Only One Faithful Uninfected Sex Partner | Using a Condom Every Time | Mosquito Bites | Supernatural Means | Sharing Food with Someone with HIV | |||
| Area | |||||||
| Urban | 81.9 | 78.5 | 96.3 | 10.4 | 4.5 | 3.7* | 112 |
| Rural | 85.5 | 69.2 | 91.4 | 16.3 | 5.8 | 13.5 | 123 |
| Age, years | |||||||
| 15–24 | 78.6 | 71.9 | 92.5 | 16.8 | 4.9 | 7.9 | 101 |
| 25–34 | 88.0 | 83.2 | 97.1 | 11.3 | 3.4 | 9.7 | 70 |
| 35–49 | 87.4 | 65.9 | 91.9 | 10.7 | 7.4 | 9.4 | 64 |
| Education | |||||||
| None/primary | 78.5* | 62.4* | 92.0 | 15.8* | 8.5* | 11.3* | 95 |
| Secondary or higher | 87.4 | 81.2 | 94.9 | 11.9 | 2.9 | 7.2 | 141 |
| Ethnicity of household head | |||||||
| Creole | 78.0 | 77.0* | 100.0 | 7.5 | 0* | 11.4 | 43 |
| Maya | 76.4 | 46.4 | 100.0 | 8.8 | 8.2 | 20.7 | 40 |
| Mestizo/Spanish/Latino | 81.8 | 76.6 | 84.8 | 17.8 | 1.3 | 4.9 | 66 |
| Garifuna | 94.0 | 83.3 | 94.6 | 13.5 | 10.7 | 5.9 | 75 |
| Other/missing/don’t know | 76.7 | 76.5 | 93.3 | 27.4 | 0.0 | 0.0 | 12 |
| Total | 83.8 | 73.6 | 93.7 | 13.5 | 5.1 | 8.8 | 236 |
Significant at P = 0.05.
Lifetime testing was not universal (73% were tested), although during antenatal care (ANC) or delivery, nearly all women (93%) received a test. Approximately one third (39%) of women had received testing in the past 12 months. We examined various forms of discriminatory attitudes and public perceptions of stigma with regard to HIV testing (Table 3). Women who exhibited lower levels of testing believed people would not buy vegetables from an HIV-positive vendor and thought that people hesitate to take a test for fear of how others will reaction. Lifetime testing was lower among younger and uneducated women. In four of the five discriminatory attitudes, women who had such beliefs had lower HIV testing rates during ANC or delivery care.
Table 3.
Discriminatory attitudes and perceptions of public stigma by HIV testing among women (N = 236)
| Variable | Lifetime Testing | No. of Women Age 15–40 Years Old | During ANC or Delivery | No. of Women Age 15–40 Years Old Who Gave Birth within the Past 5 Years | Tested for HIV within the Past 12 Months | No. of Women Who Ever Tested |
|---|---|---|---|---|---|---|
| Background variable | ||||||
| Area | ||||||
| Urban | 75.9 | 112 | 91.5 | 29 | 46.8* | 85.2 |
| Rural | 70.2 | 123 | 92.2 | 45 | 21.4 | 86.7 |
| Age, years | ||||||
| 15–24 | 50.7* | 101 | 92.1 | 30 | 44.9* | 51.2 |
| 25–34 | 91.8 | 70 | 88.3 | 32 | 40.7 | 64.5 |
| 35–49 | 87.2 | 64 | 12.9 | 13 | 31.9 | 56.1 |
| Education | ||||||
| None/primary | 80.6* | 95 | 30.8 | 35 | 29.2* | 76.5 |
| Secondary or higher | 67.8 | 141 | 37.6 | 39 | 47.0 | 95.4 |
| Ethnicity of household head | ||||||
| Creole | 75.2 | 43 | 89.2 | 15 | 43.7* | 32 |
| Maya | 58.3 | 40 | 77.0 | 15 | 14.0 | 24 |
| Mestizo/Spanish/Latino | 71.7 | 66 | 100.0 | 20 | 26.5 | 47 |
| Garifuna | 79.5 | 75 | 95.9 | 21 | 55.9 | 59 |
| Other/missing/don’t know | 79.0 | 12 | 100.0 | 4 | 42.3 | 10 |
| Discriminatory attitude | ||||||
| Would not buy fresh vegetables from shopkeeper with HIV | ||||||
| Yes | 68.7 | 73 | 92.0 | 15 | 29.5 | 50 |
| No | 74.8 | 163 | 91.8 | 60 | 43.0 | 122 |
| Children living with HIV should not be allowed to attend school with children who do not have HIV | ||||||
| Yes | 72.0 | 39 | 73.2* | 9 | 33.8 | 28 |
| No | 73.1 | 197 | 94.4 | 66 | 40.1 | 144 |
| Ashamed if someone in family had HIV | ||||||
| Yes | 77.2 | 36 | 79.9* | 16 | 20.4* | 30 |
| No | 72.1 | 197 | 95.1 | 58 | 43.0 | 142 |
| Fear of getting HIV if in contact with the saliva of a person living with HIV | ||||||
| Yes | 74.1 | 124 | 90.2 | 42 | 39.4 | 92 |
| No | 71.5 | 111 | 94.0 | 32 | 38.8 | 80 |
| Any discriminatory attitude | ||||||
| Yes | 70.8 | 163 | 89.7 | 52 | 36.7 | 116 |
| No | 77.8 | 72 | 96.6 | 23 | 43.9 | 56 |
| Public perception of stigma | ||||||
| People talk badly about people living with HIV | ||||||
| Yes | 73.1 | 205 | 90.8 | 66 | 41.4 | 150 |
| No | 71.5 | 31 | 100 | 9 | 23.8 | 22 |
| People living with HIV lose the respect of other people | ||||||
| Yes | 74.2 | 165 | 93.0 | 53 | 39.9 | 123 |
| No | 69.9 | 70 | 88.9 | 21 | 37.2 | 49 |
| People hesitate to take an HIV test because they are afraid of how other people will react | ||||||
| Yes | 72.6 | 210 | 90.9 | 67 | 40.2 | 153 |
| No | 75.8 | 25 | 100.0 | 8 | 29.8 | 19 |
| Any public perception of stigma | ||||||
| Yes | 73.0 | 226 | 91.3 | 70 | 40.7 | 165 |
| No | 70.6 | 10 | 100 | 4 | 0.0 | 7 |
| Percentage | 72.9 | 236 | 92.7 | 74 | 39.1 | 172 |
ANC = antenatal care.
Significant at P = 0.05.
Testing in the past 12 months showed a similar pattern to testing during ANC and delivery; women with discriminatory beliefs in four of the five indicators tested at lower rates.
Qualitative findings: discriminatory and stigmatizing attitudes.
Avoiding interaction with people with HIV in public.
Respondents were divided about whether to buy vegetables from a vendor living with HIV. Some had no objections, were confident that HIV could not be transmitted through vegetables, and would apply their usual criteria of where to buy:
I don’t think [buying vegetables from a vendor living with HIV] should be a problem. If he doesn’t have any cut or sores, I do not think that should be a problem. (38-year-old participant, Seine Bight)
I would buy it, because it is not the vegetables that have HIV. It all depends how the person is presented at the shop. If she is raggedy, I will not buy. But if she is well dressed, I would buy. (22-year-old participant, Seine Bight)
Others were more ambiguous and had concerns when either the vendor’s blood or bloody products were involved:
I would buy because you can’t get it from the vegetables. But if it was meat, I wouldn’t, because their blood could mix. Some could cut themselves on purpose and then it mixes with the meat. (36-year-old participant, Independence)
Some respondents were opposed to buying from vendors living with HIV out of fear of getting infected.
I wouldn’t buy from them if I know they have HIV and are handling the stuff without using gloves, because what if they have a cut and they are handling that stuff. I would be concerned that I would get the disease. (25-year-old participant, Dangriga)
I wouldn’t, because in case they get cut with knife and put it on the vegetables. (46-year-old participant, Seine Bight)
Segregation of children with HIV.
Respondents were divided over whether children with HIV should be allowed to attend school with other children. Most thought that it was the right of the children living with HIV to get the same education as all others:
[Children with HIV] are not different in any way. You are still the same person just with a disease. It is fair that the person goes to school…. You shouldn’t treat anyone with HIV any differently. (18-year-old participant, Seine Bight)
You shouldn’t keep kids away from kids. You should keep them together. They should have all rights to play with other kids at a public school or a private school. It doesn’t matter if they have autism or HIV. (25-year-old participant, Dangriga)
Other women perceived a risk of infection and therefore had reservations against children with HIV attending school:
I would say no [to allowing children with HIV to go to school with other children], because sometimes, they do not even want the children at school when they have the flu. So I do not think they will allow it. (32-year-old participant, Independence)
I would be scared that my kids would be infected by sharing cups or playing. (27-year-old participant, Placencia)
Given these concerns, this woman advised against disclosing a child’s HIV status at school:
Those who don’t have it do not need to know about the ones who have it. (19-year-old participant, Seine Bight)
Some respondents were ambiguous in their attitude, weighing their fears of infection with the perceived child’s right for education:
I was torn with that [question] because they are children, so they might pass it on, because the ways you can contract HIV is very funny. But then again, you should not deprive a child of an education. I said, no, that a child should not be deprived of an education. (28-year-old participant, Dangriga)
The focus groups confirmed differing attitudes about children attending school together:
Some people feel as though children with HIV should be separated from other children that attend the school while some respondents are not looking at the virus when it comes to the question, but they are looking at the individual. (focus group 1)
Shame.
In contrast to the reports of stigma and discrimination in the interviews and in line with the quantitative findings, all respondents said they would not be ashamed if someone in their family contracted HIV. Some argued that anyone could be affected without fault and that it would be up to family members to care for those who are infected, whereas others balanced acceptance with blame:
I wouldn’t be ashamed because it is not only them who can get it. Anybody can. (36-year-old participant, Independence)
That [having HIV] is their mistake, but they are still the same person. (22-year-old participant, Seine Bight)
Reports of public perceptions of stigma.
Most interviews corroborated survey findings, suggesting that HIV-related stigmatizing attitudes prevail among the Stann Creek population. Prejudice against people living with HIV and misconceptions in the community around HIV transmission lead to social isolation and avoidance of social situations that could lead to discrimination. This respondent illustrates how stigmatization leads to affected people’s internalization of HIV stigma:
It is very hard for someone with HIV to be around people. Some people think that HIV is contagious by just touching…. Even friendships will break because of that person who has HIV. The other friend will tend to not want to be around that person. Some people are not educated about HIV and they will just not want to be around that person because they think they will get it. (18-year-old participant, Georgetown)
Some attitudes described reveal a stark judgment of people living with HIV:
A lot of people are said to have HIV in Dangriga and others will say how people are sleeping around with other people and are giving it out. They do not even want you around because you cannot behave a type of way if you have AIDS. (22-year-old participant, Dangriga)
HIV test avoidance.
Fear of negative reactions to HIV test results (i.e., anticipated stigmatization and discrimination) constitutes a substantial barrier for people in Stann Creek to getting tested for HIV. Testing positive, so it seems for most respondents, would have clear negative implications. This anticipation leads to testing avoidance:
That is the reason why many people do not want to take an HIV test, because they don’t want people to discriminate against them and they are worried about their reputation. (28-year-old participant, Dangriga)
People always hesitate [to take an HIV test], because it will always be a negative impact on you. People would never look on you that you can live a normal life if you have AIDS. People will always look on you like you are sick. People hesitate [to get tested] because they are afraid of what the results might be. (22-year-old participant, Dangriga)
Confidentiality concerns relevant in a stigma context.
Several respondents in various locations in Stann Creek voiced confidentiality concerns related to testing as a deterrent to getting tested, when asked “Do you think people hesitate to take an HIV test because of how people will react?”
Yes, because when you take it, it will not be confidential, because other people are going to know and will treat you differently. They will watch you in a different way from other people. (39-year-old participant, Dangriga)
The nurse in [one community in Stann Creek] will tell everyone if a test comes out positive that the person has AIDS. (38-year-old participant, Middlesex)
DISCUSSION
This study investigated stigmatizing attitudes related to HIV in a population-based, representative sample of women in Stann Creek, Belize. Our findings document a lack of knowledge and misinformation about HIV transmission in the district, especially among less-educated women. Notably, the vast majority of this study’s participants perceived public stigmatizing attitudes as a means of deterring people from getting HIV testing out of concern for status loss. Our study’s qualitative component confirmed the clear relationship between stigma in the population and testing. Further quantitative analysis specifically involving women of childbearing age did not support this relationship.
At the same time, our study found that nearly all women who had ANC or delivered a child at a health-care facility were tested for HIV as part of routine care, regardless of stigmatizing attitudes. By our estimates, ANC and delivery account for a large proportion of overall testing in this sample of women. HIV testing is offered routinely as part of ANC, and women usually provide informed consent, as refusal might lead to additional stigmatization. This may imply that stigma-related HIV testing avoidance can be addressed if testing is integrated into other routine care services, given the uptake rate of HIV testing during ANC and delivery. Honduras showed a similar pattern in which 95% of women who were offered a test during ANC or delivery were tested,27 whereas in Botswana, routine testing during ANC boosted testing by 30%.28 Further study of testing during ANC and delivery in Belize is warranted to understand which lessons can be learned and applied to HIV testing for women outside of pregnancy and birth, and for men in the general population.
The qualitative results also point to confidentiality issues related to HIV testing. This is consistent with concerns documented in studies in different countries. A prior qualitative study conducted in Tanzania outlined that women and men cited the role of confidentiality of results in testing, and feared negative reactions and consequences from family and employers because of the results.29 A systematic review in sub-Saharan Africa found that even when people feel at risk for HIV, lack of trust in health providers and poor quality of service affect testing rates adversely.30 Within the Caribbean, in Barbados, medical doctors admitted to testing patients for HIV without their consent, and older providers were less trained and prepared for providing HIV care.31 Further studies should address how the health system can reduce barriers through policy and program changes.
Our survey findings suggest that women who have received less formal education at higher rates lack sufficient knowledge about HIV transmission and have misunderstandings about how HIV is spread. This is similar to other countries within Latin America and the Caribbean,32 and beyond Latin America.33–36 Specific targeting of health literacy campaigns for less-educated women in the districts needed, and combining this with stigma reduction messaging, should be considered.37–42
Our study corroborates the implications and recommendations from Persons Living with HIV Stigma Index: Belize19 conducted among people with lived experiences with HIV and stigma.3 Specifically, the report suggests introducing nondiscrimination laws resulting from the fact that respondents feel they experience stigma and discrimination because of their HIV status. Our results may imply that existing antidiscrimination legislation provided by Section 16.2 of the Belize Constitution stating that “no person shall be treated in a discriminatory manner by any person or authority” is not enforced sufficiently.43 Our study participants also shared that they believe there is judgment against and exclusion of people living with HIV. In addition, the HIV stigma index report found that most patients with HIV seek care from public or governmental facilities, and that confidentiality was a major issue, similar to our study findings.3 The similarities between the report and our study suggest that anti-stigma interventions on multiple levels (general public, providers, and individuals) are greatly needed.
Our study’s documented low HIV-related knowledge suggests a need for improving health literacy, possibly via the public education system in Belize. A previous study44 found that most teachers in Belize have good attitudes, knowledge, and instructional confidence about HIV, but there were some subgroups of teachers (primary school teachers) that were less confident in teaching about these concepts. Primary school teachers and others working with children and adolescents could benefit from training programs to equip them more effectively in teaching about the topics of sexuality and sexually transmitted infections.45,46
The findings from our study have implications for the HIV prevention cascade.47 Consistent with the qualitative results, HIV stigma has been demonstrated to increase avoidance of testing.48 Women in our study confirmed that HIV stigma leads to people avoiding even being seen at a health-care facility to get tested or to receive care, out of anticipation that others will react and think negatively about them. In addition, stigmatizing attitudes can lead to a reduction in status disclosure.49 Connected to HIV stigma, pre-exposure prophylaxis (PrEP) stigma is a barrier to increasing HIV prevention, and the findings from our study could have implications in the uptake of PrEP.50–54 Targeting HIV stigma and knowledge is thus a key strategy to making progress toward zero HIV.
Limitations.
Overall, the sample for our gendered analysis recruited women exclusively and did not include men, so we cannot assess the relation between stigma and testing among populations that also include males. We did not specifically identify HIV key populations such as sexual minorities, sex workers, and people who inject drugs.55 We acknowledge that our study had a relatively small sample size; although our sample was population representative, this prevented us from more advanced statistical analysis. In addition, the data are from 2015 and, although dated, they are still the most recent data set available, and they are unique in that we provide additional qualitative data. In the absence of anti-stigma interventions, it is unlikely that attitudes may have changed, but it is possible. Last, our questionnaires were subject to recall bias and we were unable to elicit reliably more elaborate histories of HIV testing, which would have allowed us to explore stigma implications on testing in more detail.
CONCLUSION
In Stann Creek District, Belize, stigmatizing attitudes and misconceptions about HIV are common. Women perceive stigma as pervasive, with a negative impact on people’s willingness to test for HIV. The universal testing in Belize during ANC and delivery services seems to lead to high testing rates among women independent of HIV stigma. Integration and expansion of HIV testing in routine service and health literacy campaigns that include stigma messaging within and outside of the formal educational system are necessary to reduce the public’s stigmatizing attitudes. Improving attitudes around the HIV and stigma syndemic can potentially improve universal uptake of HIV testing and care services in Belize.
ACKNOWLEDGMENTS
We thank the Statistical Institute of Belize for their help with data collection; the women on the survey teams for their tireless, skilled data collection efforts; and the women who participated in the study for taking the time.
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