Makara J Health Res.

2022;26(1):44−50
doi: 10.7454/msk.v26i1.1331

Exploring the Experience of Stigma among People Living

with HIV in Bali, Indonesia: A Qualitative Phenomenological
Study
Jufri Hidayat 1 , Xuan-Yi Huang 1 , Hung-Ru Lin 1 , Shiow-Jing Wei 1 , Miao-Yen Chen 1* ,
Satriya Pranata 2
1
School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei City 11219, Taiwan
2
Department of Nursing, Faculty of Nursing and Health Sciences, Universitas Muhammadiyah Semarang, Semarang 50273, Indonesia

Abstract
Background: Human immunodeficiency virus (HIV)-related stigma continues to be a serious problem for people living with HIV
(PLWH). This study aimed to explore stigma experience among PLWH in Bali, Indonesia.
Methods: This research was a qualitative descriptive phenomenological study. With the help of a local clinician–researcher and the
staff of the United Nations Program on AIDS Commission, Bali, 10 participants were recruited by purposive sampling and
participated in semi-structured interviews via WhatsApp online audio from April to December 2021. Data were analyzed using
Colaizzi’s process.
Results: The following three themes emerged: (1) experiencing discrimination, (2) getting stronger through stigma experiences,
and (3) receiving support. Interviews revealed that PLWH in Bali experience stigma and discrimination across settings, including
communities, families, friends, employers, and health care. Some participants could turn the pressure of stigma into a source of
strength, making them psychologically and mentally strong. This phenomenon mostly happened when the patients had positive
attitudes toward illness and good coping mechanisms.
Conclusions: This study showed the importance of support from family, friends, and organizations in surviving stigma. For PLWH,
having a sense of self-support and resilience and adaptive mechanisms also help ease the negative effects of stigma and
discrimination.

K e y w o r d s : AIDS, discrimination, HIV, qualitative research, social support, social stigma

INTRODUCTION Thus, expanding the theoretical knowledge about HIV

stigma, harassment, violent attacks on PLWH, family
Human immunodeficiency virus (HIV)-related stigma rejection, financial problems, or refusal of medical
continues to be a serious social problem for people living treatment is important in fully understanding this
with HIV (PLWH) in Indonesia.1 Around 38 million people disease.7–11 Despite the numerous actions taken by the
in the world are currently living with HIV, and 640,000 of Ministry of Health in Indonesia to provide medication,
them are in Indonesia.2 According to statistical data treatment, and care to PLWH and to prevent
published in 2016, the majority of patients with HIV in complications among this population, HIV remains a
Indonesia consist of injecting drug users (28.8%), men widespread disease and its stigma remains a potent
who have sex with men (25.8%), and transgender people barrier to treatment for many HIV positive individuals
(24.8%).3 National statistics data showed that the majority worldwide, including in Indonesia.1
of PLWH in Indonesia are concentrated in the provinces of
Papua, Jakarta, West Java, East Java, North Sumatera, and According to Goffman, stigma is defined as “an attribute
Bali.2 that reduces a person in the minds of others from a whole
and usual person to a tainted or discounted one.” 12
The HIV pandemic has been on the world stage disease When applied to patients with HIV, stigma refers to
for 40 years.4 Many studies have been conducted not only irritational or negative attitudes, behavior, and judgment
on medication and treatment for this disease but also on toward PLWH or those at risk of acquiring HIV. 10 Stigma
other aspects such as social, political, and economic.5,6 among PLWH has existed since the beginning of the HIV
pandemic, when many of these patients experienced
devastating rejection and humiliation from the society
*Corresponding author:
directed at the Lesbian, Gay, Bisexual, Transgender and
Miao-Yen Chen
School of Nursing, National Taipei University of Nursing and Health
Queer community who have long been associated with
Sciences, Taipei City, Taiwan HIV.8,11 Stigma can be extremely harmful to people with
E-mail: miaoyen@ntunhs.edu.tw HIV because it creates numerous problems that could

44 April 2022 | Vol. 26 | No. 1

 Exploring the Experience of Stigma among People Living 45

negatively affect their health and make their life non-government organizations who are trying to
circumstances difficult or unbearable. 13 eliminate the social impact of stigma and discrimination
among PLWH and improve health outcomes in Indonesia
Stigma and discrimination against PLWH often occur in and the world.
families, which may include parents, brothers and
sisters, extended family, and in-laws.1,14,15 Although 35 years have passed since the first reported
Discriminatory treatment and actions include refusing to of HIV widespread outbreak in Indonesia in 1987,
share food and rooms with PLWH, separating their patients positive for HIV in this country continue to
personal items, such as eating utensils, from a family suffer from stigma and discrimination similar to those in
member with HIV, and ostracizing PLWH by not including other parts of the world. Only a few studies, particularly
them in shared activities such as cooking food or family in the past 5 years, have explored stigma experience
gatherings.1,14–16 Neighbors, friends, and co-workers among PLWH in Indonesia. Therefore, this study aimed
may also stigmatize and discriminate against PLWH to reveal the voices of PLWH in Indonesia and their
manifested as rejection, being ignored, shunning, verbal stigma experiences.
abuse, and harassment. 17 In the workplace, stigma and
similar discrimination against PLWH may involve social METHODS
isolation, indifference, or being fired from their jobs. In
Ethics approval and consent to participate
healthcare settings, stigma and discrimination take
many forms, including criticizing, blaming, yelling at
The study protocol was reviewed and approved by an
PLWH, throwing medical records in their faces, ignoring
independent ethics committee. All participants gave
them or refusing to provide treatment and care, and
informed consent. Interviews and data collection were
unnecessarily referring patients to other health facilities.
anonymous. The transcriptions and recordings were
Although many studies have described how patients
secured and coded in a protected file. Refusal to
with HIV are being stigmatized and discriminated,
participate in the study entailed no penalties whatsoever.
limited attention has been paid to their experience of
living with HIV-related stigma and its impact on people’s
Conceptual framework
daily lives, especially in the Indonesian context.
This study followed the HIV stigma framework
developed by Earnshaw and Chaudoir, 22 which holds
Several researchers in Indonesia showed that many
that stigma is an unappreciated attribute of HIV/AIDS
PLWH continue to suffer from negative attitudes toward
and has a detrimental effect on PLWH through various
them.18 These people experience stigma and
mechanisms.15,23 This framework asserts that
discrimination in different settings, including family and
discrimination or unfair treatment is one of the
communities, health care facilities, and workplace. 1
mechanisms by which people with HIV experience
Being stigmatized by family and community can drive
stigma.15,23 It also includes a process for influencing
people to engage in risky sexual behavior and increase
social norms, values, and institutional policies related to
their sense of shame about their illness.19 Stigmatization
negative attitudes and behaviors toward PLWH. These
from health care providers may interfere with
discriminatory attitudes have a negative impact on
medication adherence by discouraging PLWH from
psychological, social, and health outcomes that affect
seeking health care, thus increasing morbidity and
the lives of PLWHA and limit their opportunities (e.g.,
mortality rates. 20,21 In addition, discrimination and
access to health care) and well-being.15,23
unpleasant behavior from employers, such as
employment rejection and harassment, can cause
Design and participants
financial harm and increase unemployment and poverty
In this qualitative descriptive phenomenological study,
among PLWH.11,19,21
in-depth and semi-structured interviews were
conducted via WhatsApp from April to December
HIV stigma and discrimination have been associated with
2021.24,25 Purposive sampling was used to recruit 10
poor outcomes in terms of mental well-being, physical
participants referred by a local clinician–researcher and
health, and social life in the HIV positive population.
the staff of the United Nations Program on AIDS
These people are prone to depression, stress, and
(UNAIDS) Commission, Bali. The sample size was
anxiety, and experiencing a poor quality of life. In terms
determined using the saturation principle in qualitative
of medical outcomes, stigma and discrimination affect
research, which holds that data collection should stop at
access and adherence to antiretroviral therapy,
the point when new information on the research topic is
prevention programs, and treatment and may also result
no longer forthcoming. 14 Inclusion criteria were as
in impaired social interaction with family, friends,
follows: at least 18 years old, diagnosed with HIV for at
colleagues, and neighbors. This study will contribute
least 6 months, and a stigma score of 12 or higher
significantly to the current level of knowledge on this
(ranging from 12 to 48). Exclusion criteria were as
topic in Indonesia and provide information for health
follows: foreign residence, refusing to participate, and
care practitioners or policy makers in government and

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46 Hidayat, et al.

having other stigmatized diseases, such as tuberculosis, significant and meaningful phrases and group them into
certain skin diseases, and psychological disorders. themes. After that, the findings were then incorporated
into a comprehensive, in-depth account of the
Data collection phenomena. Following the collection of descriptions and
Owing to the researcher’s lack of familiarity with themes, some participants were approached for a
patients, the staff from the UNAIDS commission in Bali second time by telephone interview to confirm the
and a local clinician–researcher helped introduce the findings. Additional information obtained was then
author to the patients with HIV and explained the goals incorporated into the final description. Similar to the
and purpose of the study. One day before the interview, study by Guba and Lincoln, 28 the following four criteria
the HIV Stigma Scale was administered to the were used to ensure the accuracy of the data: credibility,
participants to measure their stigma experience and dependency, conformability, and transferability. Themes
ensure their qualification. This 12-item short version and subthemes were discussed by the principle
scale was developed by Reinius, Wettergred, and investigator and project supervisor, during which their
Wiklander in 2017 and had a Cronbach’s alpha 0.7 and opinions conflicted until they came to an agreement.
scores ranged from 12 to 48, with a high score indicating
a high level of stigma. 26 Instruments were back- RESULTS
translated from English to Bahasa version and
Demographic characteristics
processed for content validity. The scale was translated
All the participants were females (100%) with a mean age
to Indonesian, transformed into an online form, and sent
of 43.5 years. Most of them graduated from high school
to participants before the interview. The participants
(60%), had jobs (40%), and were widowed (40%). Among
gave consent prior to the interviews.
the participants, 80% had been diagnosed with HIV for at
least 4 years, and the average stigma score was 25.7
On the interview day, the participants were given a brief
(Table 1).
demographic questionnaire and underwent a semi-
structured interview. Some of the questions asked to the
Themes
participants during the interview were as follows: (1)
Analysis of interview transcripts revealed the following
How long have you been experiencing stigma related to
three main themes: experiencing discrimination, getting
your HIV status? (2) What are your feelings about being
stronger through stigma experiences, and receiving
stigmatized? (3) What do you usually do when you
support.
experience stigma/when someone stigmatizes you? (4)
What do you find difficult about dealing with stigma? (5)
TABLE 1. Demographic characteristics of the participants (N =
Do you believe that someone should help you when you
10)
experience stigma or discrimination? and (6) Is there
anything else you would like to tell me regarding your
Characteristics n (%)
experience of stigma related to your HIV status? Most
interviews lasted for 45–60 minutes and were Age (Mean, SD) 43.5 (2.12)
transcribed verbatim. Notes and audio recordings of Gender
interviews were taken with permission by the Male 0 (0)
investigator. Transcript review for accuracy and Female 10 (100)
saturation and result discussion were performed by the
Education level
project supervisor (second author). Primary 0
High school 6 (60)
Data analysis College/University 4 (40)
Colaizzi’s phenomenological method was used to Graduate school 0
quantitatively analyze our data on the participants’ Marital status
stigma experience from the interviews. 24,27 According to Single 2 (20)
this technique, the data were analyzed in seven Married 2 (20)
consecutive steps: the researcher must (1) collect Widowed 4 (40)
participant statements and descriptions and transcribe Separated 2 (20)
them verbatim; (2) understand deeply the meaning of all Employment status
statements that have important meaning, (3) extract Employed 6 (60)
important phrases, (4) conceptualize important themes, Unemployed 4 (40)
(5) classify concepts and themes, (6) construct Time since HIV diagnosis
comprehensive theme descriptions, and (7) verify data +6 years 4 (40)
according to the four criteria set by Lincoln and Guba. 21 4-6 years 4 (40)
First, the interviews were transcribed verbatim by the 1-3 years 2 (10)
principal investigator. The results were then read several Less than a year 0 (0)
Mean HIV stigma score 25.7
times by the researcher and project supervisor to find

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 Exploring the Experience of Stigma among People Living 47

Theme 1: Experiencing discrimination comes from ourselves. Stigma grows from inside our minds
Discrimination refers to the act of treating PLWH or our thoughts.”(P1). Other participants similarly said that
differently than those without HIV. In our study, some of it is important for people with HIV to always think
the participants described themselves as being positively and change stigma into a source of strength.
subjected to systematic disadvantage and discrimination “My family (my mother) also stigmatized me, however I
in the workplace. Many had been denied employment choose to think positively. For example, when my mother is
because of their HIV status. One participant shared her stigmatizing me, that means that my mother still lacks
experience in a job interview: “Last time I had a job education and understanding.” (P3). Another participant
interview, they were very suspicious of me because I wrote said, “To be honest, the more people stigmatize me, the
on my CV that I had been volunteering at an HIV-advocacy stronger I get, so now I don’t feel worried about talking to
organization. They asked me what kind of organization it people about my HIV status.” (P8)
was. They also asked about my health, because at that time
I had just recovered from AIDS; my hair was just about to Theme 3: Receiving supported
grow and my body was still thin. Maybe they noticed those In our study, many participants agreed that having
symptoms as they looked at me carefully from head to toe. strong and supportive relationships with family and
I may have looked like a person recently discharged from friends is important and can be the first line of defense
hospital.” (P1) when facing societal discrimination or stigma. Mixed
with reports of stigma experiences, positive experiences
In global health care settings, the attitudes and manners were also relayed by the participants. One of them
of health care workers toward PLWH are a long-standing explained the importance of support. She spoke of the
concern. According to the participants in this study, support given by her family, how family support means
nurses and doctors sometimes do not treat them well; so much to her, and how their relationships remained
some were impolite, abrupt, and lacked empathy. One of unaffected even after her family learned of her HIV
the participants said: “The first counselor was a doctor; he status. “I also show [people who stigmatize me] that my
was so unfriendly and impolite to me. He also lacked family always supports me. I hold it up as an example to
empathy and was authoritarian. I still remember clearly his other HIV positive patients to show that family support is
sentence, ‘You have to follow my rules!, If you want to possible.” (P1). Another participant also stated that “When
recover, if you want to be healthy, you need to follow my family supports us, we will not be so afraid if people know
rules.’ I then said, ‘What kind of rules, doctor?’ ‘It doesn’t that we are HIV positive, because our family back us up.”
matter, just follow my directions and do everything that I tell (P7).
you to do.’ I was absolutely shocked and scared because this
doctor did not explain anything at all about my disease. As Other participants explained that receiving support from
a new patient, I decided to leave the hospital immediately friends is also important for someone who is HIV
and refused further tests and medication.” (P2) positive. They stated that they need friends to lean on
and trust more than anything. One participant said, “ My
Other participants also described experiences of friends never judged me badly when they found out my HIV
discrimination in health care settings, doctors refusing status. They were even very supportive and got closer. It
treatment, and other difficulties when attempting to seemed like they educated themselves about HIV on their
access medical services. Another participant stated, own.” (P1)
“There was (also) another incident when my youngest kid
had herpes and I took him to the hospital for treatment. In Several participants were able to engage in social
the hospital, I told everything to the doctor about my kid: activity, charity, or organizations and found the
that he had small red bumps, pain, itchiness, and fever. I experience really meaningful. They said that these
also told the doctor that my son was HIV positive and had activities could be a source of emotional support,
no IRV therapy yet, based on his CD4 count. The doctor’s knowledge about the disease, and a resource for seeking
response to hearing that my kid was HIV positive was help. One participant stated that “ In 2011, I decided to join
shocking; he immediately refused to examine or to treat my the association for HIV positive Indonesian women. Several
child. This is clearly indicated that this doctor is stigmatized years later, I was appointed chairman of this organization.
and discriminated against me and my son. I was very sad.” Through this organization, I met with other HIV positive
(P4) women from many backgrounds and received a lot of
support from them.” (P2).
Theme 2: Getting stronger through stigma
experiences DISCUSSION
In our study, many participants maintained positive
thinking despite being stigmatized. According to them, Many people diagnosed with HIV experience multiple
stigma is essentially happening in their own minds and layers of stigma that make their life difficult or
thoughts. One participant said, “although stigma comes unbearable.29 In our study, many of the participants
from society or from other people, in my opinion, stigma expressed concern about stigma coming from their own

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48 Hidayat, et al.

family and friends, employers, and even health care encounter in health care facilities. The curriculum for
workers. In the face of stigma related to HIV, knowledge training doctors and nurses on how to handle patients
and positive attitude toward the disease and good with HIV is not standardized in Indonesia.31–33 Although
coping mechanisms are warranted turn this negative improved training about HIV in health care settings is still
pressure into a source of strength. 14,23 In this section, we needed, progress has been achieved in the last 10
discussed the experience of stigma and discrimination years.16 Published research and government reports
among PLWH in Bali, how they get stronger through showed a significant decline in stigma and discrimination in
stigma experiences, and their need for support health care facilities in Indonesia because the staff has
particularly from family, friends, and social organizations become knowledgeable and experienced in providing
that work with patients with HIV. care to PLWH.18

Almost all of the participants had experienced Some of the participants mentioned that they
discrimination. One cause of stigma and discrimination experience stigma from their family members who
is insufficient public knowledge about the disease, which believe that being HIV positive will bring shame onto the
leads to false perceptions about transmission and the family and damage the family’s relationship with
risk of associating with a person who has HIV. 15,23 extended family members and society. A couple of
Previous research in Indonesia showed that people participants revealed that they were told to immediately
avoid contact with those infected with HIV because of leave home after disclosing their HIV status. Stigma and
their fear of being infected. 9,30 Owing to their lack of discrimination from family are particularly upsetting in
accurate knowledge, many people in Indonesia still Indonesia, where the culture traditionally supports
believe that HIV infection is acquired through casual strong bonds among family members. Society tells us
contact, for example, by shaking hands, eating together, that family is everything and is the primary place to look
and sharing a bathroom.1,18 Improving public health for support. Providing health counseling for the family
education, specifically teaching people about how HIV is members of PLWH can help them understand the risk of
transmitted, could help the public understand that this infection and how to care for and support their family
disease cannot be acquired through casual contact. member with HIV, such as by helping with adherence to
Changing social attitudes may allow PLWH to easily seek treatment regimens. Such counseling could reduce
care. stigma and discrimination and minimize the
transmission of HIV within the family. 34,35
This study found that stigma and discrimination
commonly occur in the working place. The participants Some of the participants revealed that they could turn
reported that they have been denied employment the pressure of stigma into a source of strength, making
because they are HIV positive. For example, one job them psychologically and mentally resilient. 5,11 This
recruiter interviewing a participant treated them phenomenon mostly happened when the patients had
differently by staring or looking at them fearfully from positive attitudes toward living with their illness and
head to toe. Labor law in Indonesia prohibits employers good coping mechanisms, such as seeking support from
from discriminating against PLWH in hiring and prohibits a peer group, disclosing HIV status to a selected person,
firing employees because of HIV infection. 3,18,30 and strengthening relationships among family
Furthermore, these laws specify that HIV testing is not members.9,30 Some participants explained that thinking
required for prospective employees or job promotions positively despite being stigmatized gives them a sense
and prohibit stigma and revealing the identity of of power and self-support, which are crucial in surviving
employees with HIV. 3,30 Promoting these laws in stigma. Improving their knowledge about the disease,
workplace settings and improving their enforcement are teaching them about coping mechanisms for stigma, and
warranted. In addition, education about HIV educating them about resilience and self-support could
transmission should be encouraged in the workplace so help PLWH tackle the negative effects of stigma. 35,36
that the stigma and discrimination against PLWH can be
reduced. The participants reported the need for support from
people around them to survive stigma. For PLWH, social
The interviews showed that stigma and discrimination in support is a fundamental need for their psychological
health care facilities are a common occurrence. It may and physical well-being.37 In the face of societal
include inappropriate behavior from health workers or discrimination or stigma, a strong and supportive family
refusal of treatment because health workers or support from friends is a great advantage. 1 A couple
overestimate or overreact to the risk of virus of participants described how much family support
transmission in their workplace. The occurrence of means to them. Some are grateful that their close
discrimination in health care facilities supported our relationships remained unaffected even after they
conclusion that poor knowledge and lack of training disclosed their HIV status. In addition, support from
among health workers are an underlying cause of friends can make a huge difference: PLWH need friends
stigmatizing behavior and poor treatment that PLWH they can rely on and trust so they do not feel alone,

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 Exploring the Experience of Stigma among People Living 49

isolated, and frightened. Moreover, engaging in social about transmission mode, and fear of infection can lead
activity and charity or being involved in a network of to stigma and discrimination against these patients.
people positive for HIV is an important source of Therefore, providing training and education for
resilience for PLWH. 37 These activities can provide a communities and health care professionals is crucial to
source of psychological support, information about the enhance their understanding of the disease and hopefully
disease, and opportunities for seeking practical help. reduce the stigma. Medical professionals must be
involved to ensure that public policy provides a supportive
Our study had several limitations. First, due to the small environment for PLWH and eliminates the HIV-related
sample size and the use of purposive sampling, the stigma.
findings might not be generalizable to other broad
communities of PLWH in Bali or other provinces in ACKNOWLEDGMENT
Indonesia. Second, all of the participants are females;
therefore, the results cannot be generalized to men and We would like to thank the participants in this study and
other genders. Third, other HIV positive populations, for Stefani Pfeiffer for providing language editing support.
example, men who have sex with men or transgender
people, were not included. Hence, the information about CONFLICT OF INTEREST
stigma in this study does not provide a complete picture.
Moreover, some of our interviews were brief because The author declared no conflicts of interest regarding the
the participants had other activities. This circumstance publication of this study.
may have limited the depth of information that was
obtained from the interviews. In addition, only patients FUNDING
who were living with HIV were interviewed; valuable
information from other people’s perspectives, such as This study was funded by The Elite Scholarship, Ministry
family members, friends, employers, and health care of Education, Taiwan.
workers, was not obtained. Finally, age was not
considered in the data analysis. The experience of Received: March 2, 2022 | Accepted: March 29, 2022
stigma associated with HIV may differ between
generations. Further research examining the impact of
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Makara J Health Res. April 2022 | Vol. 26 | No. 1