STIGMA TOWARD PEOPLE LIVING WITH HIV (PLHIV) AND
ITS RELATED FACTORS IN URBAN COMMUNITIES
1,3
Istianah Surury, 2Mondastri Korib Sudaryo
1Doctoral Program, Department of Public Health, Faculty of Public Health, Universitas Indonesia
2Department of Epidemiology, Faculty of Public Health, Universitas Indonesia
3Department of Public Health, Faculty of Public Health, Universitas Muhammadiyah Jakarta
email : istianah.surury11@ui.ac.id
ABSTRACT
One of the 2030 Sustainable Development Goals (SDGs) targets is to end the AIDS epidemic with Three Zeros;
no new cases of HIV/AIDS, no deaths from HIV/AIDS, and no stigma and discrimination toward people living
with HIV (PLHIV). This study aims to identify factors associated with stigma in PLHIV in urban areas. A cross-
sectional study was conducted during September – October 2022 on 204 urban residents in Jakarta, Bogor,
Depok, Tangerang, and Bekasi who were over 18 years old to measure stigma toward PLHIV, gender, age,
education level, marital status, health profession, and knowledge about HIV/AIDS. Data were analyzed
descriptively, and analytically with bivariate and multivariate analysis using multiple logistic regression. It was
found that 90.5% of the subjects had a stigma toward PLHIV. The results of the multivariate analysis found that
gender [adjusted OR: 2.850, (95% CI: 0.936 – 8.675)] and health professions [adjusted OR: 4.126, (95% CI:
1.516 – 11.225) were significantly associated with stigma toward PLHIV. Meanwhile, age, education level,
marital status, and level of knowledge were not significantly associated with stigma toward PLHIV. Specific
interventions are needed for urban women and non-health workers to reduce the stigma toward PLHIV.
Keywords: health profession; HIV/AIDS; PLHIV; Stigma
INTRODUCTION
The number of HIV cases in the world in 2021 was 38.4 million people over the age of 15
years as many as 36.7 million. By gender, 54% of people with HIV are women. Then, the
number of new HIV cases in 2021 was 1.5 million. A total of 650. 000 people died of AIDS
in 2021[1]. In Indonesia, there were 36,902 new cases of HIV in 2021, and as many as
30,160 people received ARV treatment. Most people living with HIV are in the age group of
25-49 years (69.7%). The cumulative number of HIV cases reported in 2021 was 456,453
people, while the cumulative number of AIDS cases reported in 2021 was 135,490 people [2].
Some of the provinces with the highest number of HIV cases in 2021 include DKI Jakarta
(74,867), West Java (51,218), and Banten (12,764), the majority of which are urban areas [2].
The vision of the global HIV response is to achieve three zeros: zero new HIV infections, zero
AIDS-related deaths, and zero discrimination [3]. The Ministry of Health and its partners
want to invite all levels of society to achieve success in achieving Three Zero by 2030 [4].
HIV testing and service targets of 95–95–95 are achieved in all subpopulations and ages. As
many as 95% of women of reproductive age suffer from HIV and their sexual and
reproductive health service needs are met; 95% of pregnant and lactating women live with
burden-suppressed HIV; 95% of those exposed to HIV are children and tested by 2030 [5].
The Ministry of Health is accelerating ARVs, with a target of 258,340 PLHIV treatments in
2020. Currently, only 50% or 17 provinces have achieved the target, namely: Aceh, Jambi,
South Sumatra, Bengkulu, Lampung, Bangka – Belitung, West Java, Banten, Bali, NTB,
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NTT, West Kalimantan, South Kalimantan, East Kalimantan, Central Kalimantan, North
Sulawesi and Gorontalo [4]. Public stigma toward PLHIV is one of the factors that prevent
PLHIV from testing themselves in health facilities and getting treatment.
HIV stigma is negative attitudes and beliefs about people living with HIV. The prejudice that
comes with labeling individuals as part of a group is believed to be socially unacceptable [6].
According to Corrigan and Kleinlein, stigma has two perspectives, namely community
stigma, and self-stigma. Community stigma occurs when the general public agrees with a
person's bad stereotypes (e.g., mental illness, addicts, etc.) and self-stigma is a consequence of
stigmatized people applying stigma to themselves. In 25 out of 36 countries with the latest
data according to UNAIDS, >50% of 15-49-year-olds have discriminatory attitudes toward
PLHIV [7]. Stigma and discrimination toward PLHIV cause a major barrier for PLHIV who
want to access treatment, care, education, and information to prevent HIV transmission [8].
The stigma of HIV arises from the fear of HIV. There are still misconceptions about how HIV
is transmitted and what it means to live with HIV today. The lack of information and
awareness coupled with outdated beliefs makes people afraid of contracting HIV. In addition,
many people consider HIV to be a disease that only infected certain groups. This leads to
negative value assessments of people living with HIV [6]. When stigma and discrimination
occur in PLHIV, the suffering of PLHIV will be even greater. A study involving data from 19
countries revealed that 1 in 5 (20%) PLHIV are afraid to come to the clinic because of the
stigma and discrimination they receive within society. When PLHIV waits until they fall into
the condition of AIDS, then the treatment they seek often does not produce satisfactory results
[9].
Many factors have been studied to be related to community stigma toward PLHIV. Previous
research on students aged 20-23 years at one of the universities in Sukoharjo found a
relationship between age and stigma toward PLHIV [10]. Research conducted by Wahyuni
and Ronoadmodjo (2016) on the Indonesian society 2012 Demographic and Health Survey’s
Advanced Analysis found that there was no relationship between sex and community stigma
toward PLHIV [11].
Another factor is that education is related to the stigma toward PLHIV which has good
education with a stigma of PLHIV of 69.9% and education that is less with no stigma of
PLHIV of 30.1% [11]. Another study in Kupang City found that there was no relationship
between marital status and community stigma toward PLHIV [12]. Research conducted by
Situmeang, Syarif, and Mahkota (2017) among adolescents 15-19 years in Indonesia obtained
the results of knowledge about HIV/AIDS having a relationship with community stigma
toward PLHIV with p-value = 0.000; sufficient knowledge (64.75%) with heavy stigma and
non-stigma (21.23%); lacked knowledge with severely stigmatized (78.77%) and non-
stigmatized (35.25%) [13]. Based on some of the results of these studies, there are still
inconsistencies in the relationship between several factors and community stigma toward
PLHIV. For this reason, this study aimed to find out the picture of community stigma toward
PLHIV and the factors related to it.
RESEARCH METHODS
This study was conducted with a cross-sectional design. The research was conducted in
September - October 2022 in the cities of Jakarta, Bogor, Depok, Tangerang, and South
Tangerang. Bekasi, and its surroundings. The study population is urban people aged 18 years
and over. The sample consisted of 204 respondents with inclusion criteria; living in urban
38
areas, and having never been diagnosed with HIV/AIDS until the time of data collection.
Samples were collected by purposive sampling using an online questionnaire with a Google
form. The dependent variable is the stigma toward PLHIV. The independent variables were
gender, age, education level, marital status, health profession, knowledge of HIV/AIDS, and
HIV test service.
Stigma and knowledge about HIV were measured using the 2017 Indonesian Demographic
Health Survey (IDHS) questionnaire [14]. Stigma was measured by 9 closed questions
regarding attitude statements toward PLHIV with yes/no/don't know answer choices.
Knowledge about HIV/AIDS was measured by 13 closed questions about HIV/AIDS,
knowledge of how to prevent HIV/AIDS, comprehensive knowledge about HIV/AIDS,
knowledge about prevention of mother-to-child transmission, and knowledge about
HIV/AIDS service facilities with the answer choices yes/ don't/don't know. Data are presented
descriptively, with bivariate and multivariate analysis using multiple logistic regression. The
strength of the relationship is seen based on the odds ratio (OR) value.
RESULTS AND DISCUSSIONS
The results of the analysis of participants’ stigma, characteristics, and knowledge level about
HIV of are descriptively presented in table 1. While the details of the stigma component can
be seen in table 2. Table 3 showed a cross-tabulation between independent variables and
stigma. The last, multivariate analysis modeling was presented in table 1.
Table 1. Stigma and Characteristics of Respondents
Variables F %
Stigma
Yes 191 90.5
No 20 9.5
Age
19 – 29 123 58.3
30 – 39 68 32.2
40 – 49 15 7.1
50 – 54 5 2.4
Sex
Female 186 88.2
Male 25 11.8
City
Bekasi 10 4.7
Depok 17 8.1
Bogor 19 9.0
West Jakarta 2 0.9
Central Jakarta 4 1.9
South Jakarta 28 13.3
East Jakarta 59 28.0
North Jakarta 2 0.9
Tangerang 18 8.5
South Tangerang 25 11.8
Others 27 12.8
Educational level
Elementary school 2 0.9
Junior high school 1 0.5
Senior high school 43 20.4
Diploma/bachelor degree 150 71.1
Master/Doctoral degree 15 7.1
Educational level
Low (Elementary – Senior High school) 46 21,8
High (Diploma – Doctoral degree) 165 78,2
Marriage status
Not married 122 57.8
Married 86 40.8
Divorced 3 1.4
Health profession
Yes 83 39.3
No 128 60.7
Knowledge about HIV
Less 25 11.8
Enough 186 88.2
39
The main results of this study found that 90.5% of participants had a stigma toward PLHIV.
The details of the questions and answers about the stigma can be seen in table 2. Based on its
characteristics, the average age of participants was 27.89 years with the youngest age being
19 years and the oldest 54 years. Meanwhile, according to their age range, most respondents
were aged 19-29 years (58.3%) and at least 50 – 54 years old (2.4%). As many as 88.2% of
participants were women, 28.0% lived in East Jakarta and lived the most in West and North
Jakarta. There were 71.1% of participants with a diploma or bachelor's degree and 0.9% with
a primary school education. In general, 78.2% of participants were highly educated, and
unmarried 57.8%. Based on their job category, 60.7% of participants were non-health
workers. In general, 88.2% of participants had a sufficient level of knowledge about HIV.
The details of participants' questions and answers about HIV-related knowledge are as
follows; 99.1% of them had heard of a disease called HIV/AIDS, and 80.6% knew that the
risk of being infected with HIV can be reduced by having one sexual partner who was not
infected with HIV. As many as 76.8% knew that HIV cannot be transmitted through mosquito
bites. They also knew (74.4%) that the chances of getting infected with HIV could be reduced
by using condoms every time they had sex, 59.7% knew that HIV could not be transmitted
through sharing food with an infected person, and 94.8% knew that HIV was not caused by
witchcraft.
In addition, 97.6% had learned that HIV could be transmitted through the joint use of non-
sterile syringes, 89.6% answered that HIV-positive people might have looked healthy, 73.5%
knew that HIV could be transmitted by the mother to her child during the gestation period,
during childbirth (68.7%), and during breastfeeding (64.5%). There were 86.7% of
participants knew about HIV testing and only 68.7% knew where HIV testing facilities were
located.
Table 2. Questions and answers about stigma
Stigma Questions Answers F %
Would you buy fresh vegetables from a shopkeeper or vendor Yes 54 25.6
if you knew that this person had the HIV-AIDS virus? No 54 25.6
DK/Not sure/Depends 103 48.8
If a member of your family got infected with the HIV-AIDS Yes 60 28.4
virus, would you want it to remain a secret or not? No 74 35.1
DK/Not sure/Depends 77 36.5
If a member of your family became sick with HIV-AIDS, Yes 129 61.1
would you be willing to care for her or him in your No 14 6.6
household? DK/Not sure/Depends 68 32.2
Do you think children living with HIV-AIDS should be Yes 114 54.0
allowed to attend school with children who do not HIV-AIDS No 39 18.5
DK/Not sure/Depends 58 27.5
Do you think people hesitate to take an HIV test because they Yes 178 84.4
are afraid of how other people will react if the test result is No 13 6.2
positive for HIV? DK/Not sure/Depends 20 9.5
Do people talk badly about people living with HIV, or who Yes 125 59.2
are thought to be living with HIV? No 33 15.6
DK/Not sure/Depends 53 25.1
Do people living with HIV-AIDS, or thought to be living Yes 94 44.5
with HIV-AIDS, lose the respect of other people? No 50 23.7
DK/Not sure/Depends 67 31.8
Do you agree or disagree with the following statement: I Yes 40 19.0
would be ashamed if someone in my family had HIV-AIDS. No 125 59.2
DK/Not sure/Depends 46 21.8
Do you fear that you could get HIV-AIDS if you come into Yes 128 60.7
contact with the saliva of a person living with HIV-AIDS? No 55 26.1
DK/Not sure/Depends 28 13.3
40
In table 2 we can see the details of questions related to participant stigma toward PLHIV.
Only 25.6% of participants were willing to buy fresh vegetables from traders who were HIV-
positive. 35.1% of participants would make no secret if one of their family members was
infected with HIV, but 61.1% were willing to take care of them at home. They argued that
HIV-positive children should go to school together with other healthy children (54%), and
84.4% of them rated that people would be afraid to get tested for HIV because they imagined
how society would react if they found the test result was positive.
They also thought (59.2%) that people would talk bad things about PLHIV, and people living
with PLHIV, and both would be disrespected by society (44.5%). However, 59.2% said they
were not ashamed if any of their family members were infected with HIV. Sadly, 60.7% of
participants were afraid of being infected if they were exposed to saliva from PLHIV.
Table 3. Cross-tabulation between independent variables and stigma
Variables Category Stigma toward PLWH OR 95% CI p-value
Yes (%) No (%)
Age < 40 171 (89,5) 20 (10.5) - 0.228
≥ 40 20 (100,0) 0 (0,0) Reff
Sex Female 171 (91,9) 15 (8,1) 2.850 0.069
(0.936 – 8.675)
Male 20 (80,0) 5 (20.0) Reff
Educational level Low 44 (95.7) 2 (4.3) 2.694 0.257
(0.602 – 12.063)
High 147 (89.1) 18 (10.9) Reff
Marriage status Unmarried 107 (87.7) 15 (12.3) 0.425 0.162
(0.148 – 1.215)
Married 84 (94.4) 5 (5.6) Reff
Health professional No 122 (95.3) 6 (4.7) 4.126 0.007
(1.516 – 11.225)
Yes 69 (83.1) 14 (16.9) Reff
Knowledge about Less 25 (100.0) 0 (0.0) - 0.140
HIV-AIDS Enough 166 (89.2) 20 (10.8) Reff
Furthermore, a bivariate analysis with chi-square was carried out to see the cross-tabulation
between dependent and independent variables. In table 3 we can see that 89.5% of
participants aged <40 years, and 100% aged 40 years and over have a stigma toward PLHIV.
Meanwhile, based on gender, 91.9% of women and 80% of men have a stigma toward
PLHIV. The proportion of participants who were poorly educated was 95.7% and those
highly educated was 89.1% who had a stigma toward PLHIV. There are 87.7% who are not
married/divorced and 94.4% of those who are married have a stigma toward PLHIV.
according to their job category, 95.3% of non-health workers and 83.1% of health workers
have a stigma toward PLHIV. All respondents with a low level of knowledge and 89.2% with
a sufficient level of knowledge about HIV had a stigma toward PLHIV.
After a cross-tabulation analysis, the researchers decided to include all independent variables
in multivariate modeling with multiple logistic regression analysis given the importance of all
variables in the context of stigma toward PLHIV. In multivariate modeling, interaction and
confounding tests were carried out. The interaction test was carried out on variables that were
substantially suspected to have interactions, they are the level of education with the level of
knowledge and the health profession with the level of knowledge. After the interaction test
was done, it was found that there was no interaction between these variables. So that the final
model of the analysis was listed in table 4 below:
41
Table 4. Multivariate analysis
Variables OR CI 95% p-value
Age 0.000 0.000 - ~ 0.998
Sex 5.522 1.508 – 20.222 0.010
Educational level 2.090 0.417 – 10.462 0.370
Marriage status 0.550 0.178 – 1.696 0.298
Health profession 3.303 1.068 – 10.216 0.038
Knowledge about HIV - - 0.998
The results of the final model of the multivariate analysis found that gender and health
professions were significantly associated with stigma toward PLHIV with p values of 0.001
and 0.038 respectively. Women had 5.522 times greater odds of stigmatizing PLHIV than
men (95% CI: 1,508 – 20,222). Furthermore, participants with non-health professions had
3.303 times greater odds of stigmatizing PLHIV than participants who worked as health
workers (95% CI: 1,068 – 10,216). In addition, the study found that participants' age, level of
education, marital status, and level of knowledge about HIV were not significantly associated
with stigma toward PLHIV.
The main results of this study found that 90.5% of participants in urban areas had a stigma
toward PLHIV. This is in line with and even higher results than the findings of the 2017
SDKI which found that 80% of the Indonesian population has a stigma toward PLHIV [14].
When compared to the results of the 2017 SDKI in DKI Jakarta Province, the findings of this
study are also in line with the high stigma of the community toward PLHIV (81-88%) [15].
The stigma of urban communities found in this study is higher than in non-urban areas. A
study conducted in Grobongan Regency, Central Java found that respondents still stigmatized
PLHIV [16]. The high stigma that still occurs in urban areas today is certainly a big challenge
if it is associated with the target of three zero AIDS elimination by 2030 [17].
The results of the multivariate analysis found that gender and professional status were factors
that were significantly related to stigma in PLHIV. The problem of women living with HIV is
very close to gender discrimination. In addition to the more dominant partner, women and
children who end up being victims, bear a lifelong stigma, especially from their environment,
lose their future, and lose their reproduction rights. Women are more vulnerable because of
their traditional role in society, especially in terms of their role in the household. This triggers
the stigma toward PLHIV that arises in women who are not infected with HIV [18].
Considering that women are the figures who have the most role in daily activities that have
the potential to intersect with PLHIV such as caring for HIV-positive family members, taking
care of children's schools, shopping for groceries, etc., and who are most affected if they are
infected with HIV.
This study found that most urban communities already had sufficient knowledge related to
HIV, but the stigma that arises toward PLHIV is still very high. So it was found that there was
no significant relationship between the level of knowledge and stigma. Some of the factors
that influence the stigma toward PLHIV are HIV/AIDS is a life-threatening disease, people
are afraid of being infected with HIV, the disease was associated with behaviors that have
been stigmatized in society, PLHIV is often considered as responsible if there is an infection,
moral or religious values make people believe that HIV / AIDS as a result of moral violations
[23]. So in this context, it is very possible that people whose knowledge is quite good still
have a stigma toward PLHIV.
42
Another finding in this study is that there was a significant difference between those who are
health workers and non-health workers with a stigma toward PLHIV. Participants who are not
health workers are more likely to stigmatize PLHIV than those who are health workers. This
happens because health workers get more exposure to comprehensive knowledge related to
HIV compared to non-health workers. In addition, health workers can socialize with PLHIV
more often. So they are more accepting of the existence of PLHIV in the community. Studies
comparing stigma toward PLHIV by health workers and non-health workers are still limited.
Most of the studies found examined specifically the population of health workers [19], [20].
The stigma of health workers in PLHIV is still happening, and this is a big problem because it
is health workers who play an important role in the success of HIV testing and treatment
target achievements. PLHIV which receives stigma from health workers tended to be reluctant
to get checked up and seek ARV therapy regularly [21], [22].
This study had some limitations. First, this study used a cross-sectional design so that causal
relationships cannot be inferred from the results of this study. Second, the technique of
collecting samples was purposive. So that there is a possibility that the study results cannot be
fully drawn in general representing the population conditions of urban communities in
Jabodetabek. Third, the independent variables in this study are limited to characteristics and
levels of knowledge. There are several variables related to the stigma that was not included in
this study. So, it is necessary to conduct further studies in a comprehensive manner that
includes other important variables related to stigma toward PLHIV.
CONCLUSION
The stigma in urban communities toward PLHIV is still very high. This is a tough challenge
to achieve the target of zero stigmas and discrimination by 2030. Women and non-health
workers are shown to have the potential to have a higher stigma toward PLHIV than men, and
health workers. For this reason, it is necessary to make efforts to reduce stigma in society
specifically, especially for women and non-health workers by all parties (government, private
sector, and the community itself) in the form of comprehensive education, and other inclusive
activities that involve the general public to realize their important role in efforts to reduce
community stigma toward PLHIV.
ACKNOWLEDGMENT
The authors thanked Nastiti Dyah Prastiwi for helping the research operational process in the
form of data collection and manuscript editing.
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