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Qualitative study of HIV related stigma and discrimination: What women say in Iran

Authors:

Abstract

Introduction HIV-related stigma is a major social problem of people living with HIV. Stigma against these people, especially women, interferes with the prevention, diagnosis and treatment of HIV. This study examined the experiences of HIV infected women who were stigmatized, as well as the strategies used to tackle the issue. Methods Twenty-five women living with HIV were examined using in-depth, semi-structured interviews. The data obtained was analyzed using content analysis method in MAXQDA10. Results The finding of this study was classified into four themes: fear, shame, rejection by family or friends and feelings of frustration. The participant strategies adopted to the perceived stigma and discrimination included isolation, nondisclosure, and loss of follow-up. Conclusions HIV in women has different social interposition. It is necessary to intervene, so as to alleviate the effect of stigma on HIV infected women, in order that they gain the ability to accomplish wellness, increase life span and improve quality of life. Nurses, midwives and other professionals need to be involved to ensure public policy in providing supportive environments, and decrease stigma.
Electronic Physician (ISSN: 2008-5842) http://www.ephysician.ir
July 2017, Volume: 9, Issue: 7, Pages: 4718-4724, DOI: http://dx.doi.org/10.19082/4718
Corresponding author:
Farzaneh Kashefi, Nursing Care Research Center, Iran University of Medical Sciences, Rashid Yasami Street, Vali -
Asr Avenue, Tehran, Iran. Telefax: +982188671613, E -mail: Kashefimidwife@gmail.com, Kashefi.f@tak.iums.ac.ir
Received: October 12, 2016, Accepted: February 10, 2017, Published: July 2017
iThenticate screening: January 29, 2017, English editing: March 04, 2017, Quality control: June 12, 2017
© 2017 The Authors. This is an open access article under the terms of the Creative Commons Attribution -NonCommercial-
NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is
non-commercial and no modifications or adaptations are made.
Page 4718
Qualitative study of HIV related stigma and discrimination: What women say in Iran
Fatemeh Oskouie1, Farzaneh Kashefi2, Forough Rafii1, Mohammad Mehdi Gouya3,4
1Ph.D., Professor, Nursing Care Research Center and School of Nursing and Midwifery, Iran University of Medical
Sciences, Tehran, Iran
2Ph.D. Student, Nursing Care Research Center, Iran University of Medical Sciences, Tehran, Iran
3MD, Director General (DG), Iranian Center for Communicable Disease Control (CDC), Ministry of Health and
Medical Education (MOHME), Tehran, Iran
4Associate Professor, School of Medicine, Iran University of Medical Sciences, Tehran, Iran
Type of article: Original
Abstract
Introduction: HIV-related stigma is a major social problem of people living with HIV. Stigma against these
people, especially women, interferes with the prevention, diagnosis and treatment of HIV. Thi s study examined
the experiences of HIV infected women who were stigmatized, as well as the strategies used to tackle the issue.
Methods: Twenty-five women living with HIV were examined using in-depth, semi-structured interviews. The
data obtained was analyzed using content analysis method in MAXQDA10.
Results: The finding of this study was classified into four themes: fear, shame, rejection by family or friends and
feelings of frustration. The participant strategies adopted to the perceived stigma and discrimination included
isolation, nondisclosure, and loss of follow-up.
Conclusions: HIV in women has different social interposition. It is necessary to intervene, so as to alleviate the
effect of stigma on HIV infected women, in order that they gain the ab ility to accomplish wellness, increase life
span and improve quality of life. Nurses, midwives and other professionals need to be involved to ensure public
policy in providing supportive environments, and decrease stigma.
Keywords: Stigma, Discrimination, HIV, AIDS, Qualitative study
1. Introduction
The human immunodeficiency virus (HIV) pandemic remains a global health challenge. Today 36.9 million people
in the world live with HIV (1). According to the latest published statistics, the number of people with HIV in Iran is
30,183. Sixty- six percent (66%) of the patients are men and thirty -four percent (34%) are women. Today, sexual
transmission rates could be increased from 10 to 41% (2). In Iran, a national HIV treatment system has been
established, and is the pioneer in the Middle East for HIV prevention (free needle -exchange program) (3). During
the past decade, researchers have been asked to expand the theoretical knowledge of HIV related stigma, and pay
more attention to the contexts and approaches utilized (4). Despite numerous attempts aimed at its prevention and
cure, HIV/AIDS is still widespread and stigmatization is still a potent barrier for HIV -positive women (5). Goffman
defines stigma as “an attribute that reduces a person in the minds of others from a whole and usual person to a
tainted, discounted one” (6) . Based on research conducted in Iran, HIV infected women are still suffering stigma
and discrimination (7). HIV stigma hinders the movement of an effectual remedy, as well as effective he alth results
for HIV infected individuals (8). Stigmatization among these women creates numerous problems, including
loneliness, isolation, low self-esteem, identity crisis, low seeking care behavior and non -participation in routine HIV
testing (9). Stigma interferes with medication adherence, insufficient service utilization and eventually apathetic
effects on morbidity and mortality (10, 11). They are faced with a charge and held aloof by their family and
community because these women are alert to their HIV status. However, when women with HIV experience
compassion from their community, they have the tendency to take precautions regarding their sexual behavior (5).
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The case is so serious that it has consolidated the common knowledge that HIV stigma is to s ome extent adaptable
by awareness, training, education and exposure (12). Experiences such as rejection by societal discrimination or
disapproval, which are related to HIV, may increase the sense of shame of the infected individual based on their
illness (4). These women may also gain experience in some unpleasant circumstances in their lives such as
animosity, refusal of profitable employment, obligatory early retirement, and delivery of low -avidity treatment and
therefore, aggregation in hospitals. Women with HIV normally experience discrimination and deprivation from a
community rooted in stigma. Consequently, they prefer not to reveal their infection and continue to get involved in
risky behavior (5). Although 25 years have passed since the widespread oc currence of HIV in Iran, as in other parts
of the world, women have been suffering from stigmatization and discrimination, when they interact in society (13).
Unfortunately, few studies have been conducted on the stigma experience of HIV infected outpatien t women in Iran.
The aim of this study was to reveal the voices of HIV infected women in Iran, and their experience of stigma.
2. Material and Methods
2.1. Design and participants
A qualitative research method was employed for this study. Purposeful samp le of eligible participants was recruited
between October 2015 and December 2016 from behavioral counseling centers affiliated to three medical
universities in Iran: Iran University of Medical Sciences, Tehran University of Medical Sciences and Shahid
Beheshti University of Medical Sciences in Tehran. The centers provide specific services such as medical and
psychological care. Eligible participants had to have received an HIV diagnosis by lab data, at least 18 years old,
and Persian speaking. Participants were granted a 300,000 Rials gift card as a token of the investigator’s
appreciation. Matic saturation was regarded as the base of recruiting the target numbers.
2.2. Data Collection
A qualitative research content analysis method was used. Due to the unfamiliar atmosphere with the women, the
staff tried their best to approach them by helping them with the aim of building trust and encouraging patients to
participate in the interviews. Staff and counselors who were at the center s, instructed in advance regarding the goals
and methods of the study. In addition, centers physicians introduced women who were consent to participate in the
study. With the aid of a purposeful sampling, 25 participants were selected. At the interview, a consent form and a
brief demographic questionnaire was completed by the participants. The following questions were asked in the
interview: How do you feel about the disease? How is your life influenced by the disease? The subjects of the study
were asked to give their viewpoints accor ding to their personal life experiences. Interviews were conducted in a
private room in the behavioral counseling centers. Most interviews lasted for 45 to 60 min. Investigator took notes
on the interviews which were also recorded after obtaining permissio n from interviewees. Each participant
responded to questions about age, education, marital status, job, HIV status, number of children, time of diagnosis
and the method of transmission. In order to find out the themes, the recorded interviews and notes we re coded with
MAXQDA 10 software and grouped into categories. The supervisor reviewed the transcripts of the interviews for
accuracy.
2.3. Data analysis, reliability and validity
Data analysis used was conventional content analysis by constant comparison method. This type of design is usually
appropriate when existing theory or research literature on a phenomenon is limited (15). To ensure the accuracy of
the analyzed data, we used four criteria of credibility, dependency; conformability and transferabilit y, which were
used according to Lincoln and Guba (16).
2.4. Ethical Considerations
This study was reviewed and approved by the Ethical Committee of the Iran University of Medical sciences (IUMS)
(Ethic Code: 105/5983). All participants were asked to provide consent in Persian, their free will to take part in the
interview, and the entire data collected was anonymous. The transcriptions and records, in their entirety, were
secured and coded in a protected file. Refusal to participate in the study had no int erference with the service or
treatment received at the center.
3. Results
Table 1 shows the demographic profile of the participants. The participants aged between 20 and 49 years old. Ten
women were married, nine women were divorced, two women were widow ed and four women were single. Women
with HIV described four main themes of HIV- related stigma: fear, shame, rejection by family or friends and feeling
frustrated. Four main themes show the approaches participants had to their personal experiences by isol ation, non-
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disclosure and loss of follow-up. All the themes discussed below depict the dimensions of experiencing the stigma
and the strategies employed to deal with such experiences.
3.1. Dimension of the stigma
The majority of the participants tried to hide their disease due to fear of death and loss of their children. The
participants unanimously referred to AIDS as a fatal disease.
3.1.1. Fear:
Mahtab, a 32-year old described her fear of death as follows: “During the first test, I was very ill and inf ected with
Cytomegalovirus; thereafter, I was hospitalized in ICU due to coma. I was terrified that I was going to die”…
In another example, Atena said: “I started losing weight, headache began with nausea, and vomiting, finally I
decided to go to the clinic because I could see that I was dying …. I do not know when it will kill me …. I cried for
days and speak to my god… I am afraid of death”. Another participant said: “I started to become irritable. I was in a
good mood until I began treatment. I thought my life has ended and I was afraid to die and Gandom (my daughter)
will have no support. I don’t want my child to be raised by another”. Participants were scared of permanent
disabilities. “I was afraid of change and being crippled”. When they told me, if treated I would not change and stay
well, I felt like I could keep my dignity. My self -esteem was improved. I had a bad feeling during a month of
struggling “(Rogin, a 42-year-old). “I now have an 18-year-old daughter but I can never say that I use these
treatments because of this disease. It is a very awkward and scary feeling because if our child was aware of the fact
that her parents are infected with this virus she may avoid us” (Mahan, 38 years -old afraid of being discriminated by
her daughter). The participants described stigma as the unforeseen or anticipated fear of how other people would
respond to HIV infected women. Clearly, Mahan feared that the stigma she is experiencing would be transferred to
her daughter.
3.1.2. Shame:
Being HIV positive confers to a strong sense of shame, with the family also feeling the disgrace. Even though the
family provides good care, the true compassion is not seen, if ever mentioned (10). The stigma and fear of how HIV
women would reveal their HIV status, was regula rly stated as a response to every question. It was reported that
women living with HIV expressed a sense of shame. They also stated that not only people will know about the
disease, but they are also disturbed by the gossip and how people talk. People might think that the disease is
transmitted by drug injections or unwanted sexual behavior. Especially if the patient is a woman, they think that she
probably could have gotten the disease from disapproved sexual intercourse and if the patient is a man, they t hink
the transmission route was via injecting drugs. “This disease is not acceptable in terms of our traditions. Well,
people have different attitude towards us which is hard to deal with (silence)” (Araks, 34 years -old). Another
participant said, “People think badly of this disease, most of the people prefer to claim that they have been infected
by drug injection rather than having sex” (Maral, 32 years old). “I may live for as long as a normal person, but I am
like a person in death row waiting to be exec uted. Our society has a different attitude towards us. Fortunately, there
are not many people here so I feel comfortable coming, however before now, when the center was located
somewhere else, it was full of people and I did not feel comfortable coming. I do not like this; the attitude of people
is such that when they know why you are here, you feel ashamed” (Elham, 37 year -old).
3.1.3. Rejection
In our study, most people had been abandoned by their family and society. According to their experiences, educa tion
and awareness of people is very low, therefore after informing the family about the disease, some reacted very badly
or even rejected these people. “They said we would not interact with such people, if we knew someone was
suffering from AIDS, we would leave them” (Elnaz 32-year-old). “You may enter a place where people do not
behave well towards you or point at you. The only thing that has made this disease such a monster is the thought of
sexual intercourse. So you are abandoned unintentionally. One o f my friends said when she approached his 80-year-
old father to kiss him; he avoided the kiss due to lack of knowledge” (Rogin 42 years old). “I have heard the
discussions over and over that you should not be friends with someone infected with HIV as she might infect you.
Interestingly, I heard it from someone with a master degree from a university “(28 -year-old participant). “I lost my
job because of this disease. I used to work in a barbershop. I lost my abilities and so I was forced to talk about my
disease with my boss and she asked me to resign. This disease has not been resolved for at least 80% of the people,
and they think they will be infected by hand contact or kissing. My boss did not even allow me to pour tea in his cup
soon after she discovered that I have HIV. My sister also worked there and my boss forced her to take the test even
though I insisted that she is my sister and there is no way she could have been infected with the disease.
Nevertheless, she insisted that my sister eats with me and even though I told him it’s not a route of transmission, she
would just not understand. My sister had to take the test so that she would not lose her job. The name of the disease
causes fear. We have a dentist neighbor, whom my husband once went to for dental care, and was told about the
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disease for clear conscious but she informed the whole building that we live in. I once heard the building supervisor
saying to another suite, do not keep close contact with them, they have such disease. If you tell people that someone
has cancer they will hug and kiss him and protect him financially but they have such bad attitude towards us (with
anger). Leave them alone, that is what they say we did not contract this disease intentionally. It is just out of
ignorance; we are patients like someone with cancer “(44 -year-old participant describing her experience).
3.1.4. Frustration:
According to the participants, most of them feel frustrated and lonely. One participant said “most of the time I just
sit by myself talking to myself saying why? Why me?” Another participant mentioned how it would have been
better to have another disease. More than half of the women believed that it would have been better to have cancer
than HIV, “At least people will show some compassion there “When I think about it, it is kind of hard to take. I
may sometimes think it is very easy but (along with sadness and crying) I did not deserve this. I have done nothing
bad in my life. I do not know …. (Silence), but how long am I going to be isolated and not talk about my problems?
How long can I stand being mocked or being called a HIV -positive patient? (Along with crying)” (Elnaz, 32 year -
old). Azita, a 33-year-old who got married for the second time to an addict, talked about her experience; “I always
asked why this happened to me. Why I did this. Why I did not investigate about my husband. Damn me, why did I
not ask his neighbors, but then I said to myself maybe it is my destiny (with sadness)”.
3.2. Strategies Adopted with Stigma
The strategies adopted include isolation, non-disclosure and loss of follow-up. Women living with HIV/AIDS may
prefer to stay isolated rather than facing the stigma. Most participants in this study found that although secrecy
protected them from rejection and pain, it also led to isolation. They had to make excuses to refrain from seeing old
friends, and making new friends.
3.2.1. Isolation:
Fataneh, 44 years old said, “I was isolated after being infected. I lost my job because of this disease. My boss
normally tells me to come and visit them but when I did, she told me not to shake hands with others. They do not
understand but he told me not to shake hands or kiss them so I stopped visiting”. Another participant said, “As soon
as I found out about my disease, I tried not to communicate with others as we are a big family and we used to
communicate a lot. Some participants decided not to attend any public events, like weddings, birthdays and family
reunions.” Elnaz a self- isolated patient stated that, when she discovered that she was HIV-positive, she gave up
participating in any feasts, she did not wish to visit anybody including her own sister.
3.2.2. Nondisclosure:
Several participants were not able to communicate with honesty and effectiveness with other people as they w ere
afraid of negative retribution regarding past negative experiences. The subjects of this study felt that other people
are scared of being infected and therefore denied verbally and emotionally. Mahan said, “One day I went to a dental
clinic, they gave me a form to state if I had any special disease, I wrote about my disease but they did not provide
me with any services and I was dying of pain, I was there for my wisdom tooth. I had a terrible pain in my whole
body and it was hard to keep on living. I vi sited two other places and they reacted the same way. I was even ready to
pay more so that they would do something for me, which they did not. Thereafter, I went to a doctor and this time
around, I did not write about my disease and I simply got the servic e I wanted. I literally said I would never inform
anybody about my disease and my husband agreed to it. Do not write about your disease, they will not provide you
with any services, pain was killing me, tolerating that much pain was difficult.” Another participant who was a
housekeeper explained that she went to the hospital for urinary tract infection; “She could not even inform her sister
and family because they could find out about her disease, she had to hide her disease”. Another participant said,
“Healthcare professionals do not have a good attitude towards us. Physicians, dentists or laboratory technicians will
not treat us well. Some of them behave in such a way that we will regret even seeking medical help. Azita, a 33 -
year-old participant and a housekeeper explained, “When I was an expectant mother, I went to a hospital where I
was referred to a gynecologist, in that ward, every doctor passed me to another and I was just crying as people asked
me if I had lost someone. From that time, I promised mys elf not to tell anyone (angry and throwing her purse). I told
them you would wear gloves how can I transmit the virus to you? What kind of attitude is that? They all screamed
out to one another to visit me (angry and crying). I was hearing them, I think no body saw me in the end and told me
we have no time, when I came out I told my husband that I will never talk about my disease, why do I have to cry
this much? I would never say that I am infected with HIV anywhere else. Yes, I have this bad memory and when I
went to visit a dentist, I did not talk about my disease. It has been 2 -3 years since I last visited the hospital for a
midwifery control”.
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3.2.3. Loss of follow-up:
Fear of disclosure affected the process of treatment in many women due to the fact t hat they did not want to take
their medication in the presence of others. The result of nondisclosure caused changes related with the ability of
women. The participants in our study were hesitant to inform anyone for fear of been rejected. The HIV related
stigma is a more serious problem for women. Mahsa key informants stated that the main motive for the withdrawal
of women with HIV from follow-up was stigma. Most participants in this study prefer not to show up in society or
hospital, so they continue with self-medication or alternative therapies.
Table 1. Demographic Profile of Participants
Characteristics
n (%)
Age (year), mean (SD)
35 (1.4)
Education
Less than high school
14 (56)
High school
5 (20)
More than high school
6 (24)
Relationship status
Single
4 (16)
Married
10 (40)
Divorced
9 (36)
Widow
1 (4)
Separated
1 (4)
Employment status
Full time
4 (16)
Part time
4 (16)
No employment
17 (68)
Time since HIV diagnosis
+6 years ago
3 (12)
4-6 years ago
6 (24)
1-3 years ago
16 (64)
Risk factor for acquiring HIV
Sexual contact
4 (16)
Intravenous drug user
4 (16)
Both of them
3 (12)
Partner’s intravenous drug use
12 (48)
Unknown
2 (8)
SD= standard deviation
4. Discussion
The 25 women who participated in our study had various experiences, not only related to stigma but also to
situations where they lived. In major parts of the globe, women lack the social, economic, and will that men have,
and this makes them prone to HIV and other negative aspects of life. Stigma mi ght have critical unfavorable effects
on the daily lives of women due to the fact that it leads to a lack of control over sexuality (17). Women had the
experience of feeling at loss which gave rise to the feeling of fright and shame that they had been diag nosed with
HIV. This experience, in turn, resulted in coping in the form of social isolation, which is self -imposed, and secrecy
about their health condition. Feeling ashamed facilitated the internalization of negative realization, and culminated
in more profound forms of self-discrimination (18). This study found that the fear of stigmatization in women did
not vanish, even after they began treatment. However, some of them refrained from visiting support groups, which
are available at the centers. Therefor e, they prefer to receive care from centers far from their residence or use self -
medication and alternative therapies. Previous studies indicate that a minority of participants stated that people
behave negatively towards them (42%), avoid being close to t hem (29%) or are ostracized from social events (20%),
because of their HIV status. This study revealed that HIV related stigma is still the main concern. Endeavors to
decrease stigma are necessary to focus prompt HIV relevant test and treatment. Strong sti gma towards women with
HIV is due to the fright of transmission and immoral behavior (19, 20). Shame was greatly observed in women with
HIV, a finding discovered in the current studies conducted in Kuwait and Saudi Arabia, which enjoy common
culture and religious backgrounds with Egypt (20). The stigma of carrying HIV and associated discrimination, has to
be ended through specific cultural programs. The programs need to emphasize on value -based stigma and link the
cultural norms of t society, gender and eth ical debates to talk about the stigma. It has been shown that the utilization
of interventions that bring HIV positive women and other people together in face -to-face interactions, can
successfully decline the concept of shame in women with HIV (21). Parti cipants in the present study encountered a
great deal of stigma when ever they visited a dentist, which was in line with previous studies (13). Social support,
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which has been readily available most times in their lives, would now be useful in dealing with this disease. If
women choose to keep their test results secret, they must avoid any situation where they may have to reveal their
diagnosis. According to the women in this study, the most serious impact of non-disclosure is isolation. They
believe this isolation is necessary if they choose to be less than honest with others. Their decision to reveal their test
results to everyone may lead to rejection, frustration and pain. Some subjects revealed that they stayed away from
family and friends in order not to be rejected (13). Discrimination deprived them of having success to others which
made them feel ashamed and concealed their problem. Disclosure could be a way of gaining care and support (22,
23). Updated programs and researches with profound religious v alues are supplemented by the Iran AIDS program;
nevertheless, HIV positive women in Iran are greatly faced with embarrassment and isolation, and usually do not
seek medical care in a scheduled program. The present study provides precious insight into stig ma prevention,
which has been depicted to change because of intervention. Moreover, clergymen can plan supportive interventions
to develop anti-stigma programs. Religious leaders should be motivated to talk about acceptance and coping of those
living with HIV.
5. Limitations
Since these findings are from a qualitative research design, they lac k generalizability. The entire population of this
study were recruited from the behavioral counseling centers of Tehran. Therefore, the stigma experienced by our
participants might have been different from those attending other clinics. This does not allow generalizing the results
to the entire population of HIV-positive women in Iran. Despite these limitations, we believe that this study
possesses several strengths. This research was the first of its kind in Iran that investigated the magnitude of HIV -
related stigma and discrimination against women. Further to this, we used in-depth interviews that allowed us
explore the participants’ feelings and perspectives on HIV-related stigma. The one-on-one interviews were
productive as each participant had enough time and opportunity to share her feelings, perspectives and attitudes.
Since participants tended to express themselves more freely, the researcher had enough time to probe and obtain in-
depth responses. Findings of our study have important implications for practice, and can help improve the services
and interventions for HIV-positive women that in turn, reduce the HIV-related stigma among these people.
6. Conclusions
The findings of this study showed stigma toward these women. This study showed that it is necessary to pay closer
attention to women with much experience of living with HIV, and utilizing the obtained experiences to gain more
profound knowledge of the issue as a whole. With regard to recent theoretical perspectives, the study of stigma
related HIV sounds useful. It is necessary for authorities to consider HIV and the program for health education in
varied local communities of Iran. Training people to enhance their understanding on the transmission and control of
HIV is significant in tackling the problem.
Acknowledgments:
The data were collected as part of a Ph.D. degree dissertation at the Nursing Care Research Center in Iran University
of Medical Sciences. The authors would like to express their gratitude to the Health Departments of Iran University
of Medical Sciences, Tehran University of Medical Sciences and Shahid Behshti University of Medical Sciences for
their support and contribution to this study. Also, we would like to note our appreciation of the women, who took
part in this study, for their valuable contribution. They voluntarily participated in the study and shared their thoughts
and experiences. Without their cooperation, the present study wo uld have not been possible.
Note: All names in the text are pseudonyms.
Conflict of Interest:
There is no conflict of interest to be declared.
Authors' contributions:
FK wrote the proposal, conducted data collection and analysis and wrote the draft man uscript. FO contributed
toward the conceptualization of the study, interpretation of the finding and drafting of the manuscript. All authors
have given final approval of the version to be published.
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... 1 Being stigmatized by family and community can drive people to engage in risky sexual behavior and increase their sense of shame about their illness. 19 Stigmatization from health care providers may interfere with medication adherence by discouraging PLWH from seeking health care, thus increasing morbidity and mortality rates. 20,21 In addition, discrimination and unpleasant behavior from employers, such as employment rejection and harassment, can cause financial harm and increase unemployment and poverty among PLWH. ...
... 20,21 In addition, discrimination and unpleasant behavior from employers, such as employment rejection and harassment, can cause financial harm and increase unemployment and poverty among PLWH. 11,19,21 HIV stigma and discrimination have been associated with poor outcomes in terms of mental well-being, physical health, and social life in the HIV positive population. These people are prone to depression, stress, and anxiety, and experiencing a poor quality of life. ...
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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.
... The rate of disclosure in women living with HIV (WLHIV) to sexual partners varies widely according to countries and Research (2022) 27:56 their cultures [8,9]. Previous studies found that women are less inclined to disclose their positive status to their sexual partners than men in Iran [10] which is in contrast to other countries [6,11]. The critical barriers to status disclosure in WLHIV are often cited as stigma, loss of children [10], fear of abandonment, loss of economic support, discrimination, violence, and shame [12]. ...
... Previous studies found that women are less inclined to disclose their positive status to their sexual partners than men in Iran [10] which is in contrast to other countries [6,11]. The critical barriers to status disclosure in WLHIV are often cited as stigma, loss of children [10], fear of abandonment, loss of economic support, discrimination, violence, and shame [12]. ...
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Background Disclosure of HIV-positive status in women is associated with many factors. Consequently, status disclosure remains a challenge for Iranian women living with HIV. This study aimed to assess the prevalence, related factors, and reflections of HIV-positive status disclosure to a sexual partner(s) among Iranian women living with HIV. Methods A cross-sectional study was conducted on 170 HIV-seropositive women. Participants were selected from patients registered in the largest HIV clinic and HIV-positive club of Iran. The “HIV disclosure” questionnaire had 38-items and all the interviews were administered by the researcher. Data were analyzed using SPSS version 21.0 software. We used a logistic regression method to calculate the crude odds ratio (COR) and the adjusted odds ratio (AOR) for self-disclosure as the independent predictor variable and the dependent variable, respectively. Results One hundred and seventy HIV-positive women were enrolled. Most of them had disclosed their HIV status to at least one person (94.1%) and their sexual partners (86.5%). In the univariate analysis, being married (COR = 18.66, 95% CI 5.63–61.87), living with a sexual partner (COR = 4.72, 95% CI 1.92–11.62), being aware of sexual partners’ HIV status (COR = 6.20, 95% CI 1.79–21.49), and gaining the support of sexual partner (COR = 9.08, 95% CI 3.48–23.64) were associated with higher odds of HIV status disclosure. In the multivariate analysis, being aware of sexual partners’ HIV status, and gaining the support of sexual partners remained associated with HIV status disclosure. Most women reported a positive reflection from their sexual partners after disclosure, however, negative reflections from society were more common compared to sexual partners and family members. Conclusion This study shows high overall HIV disclosure proportions. It should be noted that a large number of women were infected by their sexual partners, especially by their spouses. The high rate of transmission in married people indicates an urgent need for more emphasis on appropriate prevention behaviors by infected partners.
... Previous stigma studies mainly investigated the lived experiences of PLHIV and highlighted the high levels of internal and external stigma among them in a variety of contexts. For example, participants mentioned internal stigma such as silence, shame, and feeling miserable; they also reported experiencing external stigma by their families, the community, and the health-care system (3,(23)(24)(25)(26)(27). ...
... Development of the stigma-reduction interventions is particularly imperative among females since the current study found that females had a higher level of HIVrelated stigma. Females in Iran historically experience greater social, cultural, and contextual barriers (24,38) that might impact their knowledge level and attitudes. The current study findings may indicate gender-based interventions in which females' negative attitudes toward HIV can be effectively addressed. ...
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Background: HIV-related stigma is a barrier to effective HIV responses among people living with HIV (PLHIV). Objectives: The current study aimed at measuring knowledge, stigma, and associated factors among the general population in the Southeast of Iran through a self-administered questionnaire. Methods: The current cross-sectional study was conducted on a convenience sample of 900 individuals in Kerman, Southeast of Iran, from July to September 2016. Data collection was completed using a three-part researcher-made questionnaire, including (I) demographic and background characteristics; (II) HIV-related stigma; and (III) HIV-related knowledge. Data were analyzed with SPSS version 20 using descriptive statistics and bivariable and multivariable linear regressions. Results: Low, moderate, and high levels of stigmatizing attitudes toward PLHIV were reported by 39.1%, 57.8%, and 3.1% of the participants, respectively. Female gender (beta = 0.33, P value = 0.01), and not having a history of HIV testing (beta = 0.45, P value < 0.001) were positively associated with higher levels of stigmatizing attitudes, while a higher level of education (beta = -0.97, P value < 0.001) was associated with a lower level of stigmatizing attitudes. Conclusions: Gender-sensitive educational interventions need to be developed to reduce the negative attitude towards PLHIV.
... Stigma is a significant barrier in the uptake of PMTCT services. Subtle attitudes of stigmatization and discrimination from health providers are often overlooked and can limit PMTCT services' effectiveness (Oskouie et al., 2017). A strong correlation has been identified between gender responsiveness and the course of the HIV epidemic (Guide, 2010). ...
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This study examines gender inequality as a barrier to utilization of services in mother to child transmission of HIV/AIDS in Pakistan. The study uses a feminist approach to explore the barriers related to gender inequality during the uptake of HIV treatment. The data was collected from 26 medical practitioners and 10 HIV positive mothers through in-depth interviews. HIV positive mothers were found to have experienced discrimination in their treatment, difficulty in travelling from far off areas to the special clinics, and they expressed having the least family support as HIV patients. They also experienced inequality in terms of the use of ARV prophylaxis, autonomy in reproductive choices, sexual priorities, disclosure, stigma, agency and intimate partner violence. Furthermore, they emphasized the need for sensitization and counseling of male spouses. The study concludes that the gender inequality grossly affects the uptake of HIV treatment among HIV positive mothers. It is thus recommended that there is a need to incorporate gender inclusive policy and practice to eliminate the vertical transmission of HIV in Pakistan.
... In order to effectively block the mother-to-child transmission of HIV/AIDS, midwives played a very important role in their delivery arrangements. Midwives must understand in who receives care and when, who provides care, the working conditions of those who provide care, coordination of care amongst different providers, where care is provided, the use of information and communication technology to deliver care, and quality and safety systems [4][5][6]. ...
... [13][14][15] For example, epidemiological studies from 2010 to 2019 indicate that stigma and discrimination among Iranian PLWHA cause various problems for the patients by hindering them from accessing the healthcare services including antiretroviral therapy (ART). [15][16][17][18] Literature shows a number of factors associated with a low mean score of QOL in PLWHA including older age, low income, unemployment, low education, hospitalization due to HIV, and a CD4+ cell count <200 mm 3 . [19][20][21] However, little is known about the link between other sociodemographic variables such as the history of incarceration, drug abuse, and stigma. ...
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Background: Stigma against HIV profoundly affects the quality of life (QOL) of people living with HIV/AIDS (PLWHA). We aimed to assess the factors associated with QOL in PLWHA in Iran, specifically HIV-related stigma, sociodemographic and clinical characteristics. Methods: Two hundred PLWHA participated in this cross-sectional study. Data were collected using sociodemographic, stigma, and WHO-QOL-BREF questionnaires. Correlations, ANOVAs, and Student's t-distribution tests were performed as bivariate analyses. We employed stepwise multiple linear regression analysis to explore the main factors associated with QOL domains. Results: Six domains of QOL were negatively correlated with three domains of stigma (p<0.001 for all). Stepwise multiple linear regression revealed that, after adjusting for confounders, lack of healthcare insurance, having no basic knowledge of HIV/AIDs prior to diagnosis, low monthly income of participants and family, and stigma (blaming and distancing, discrimination, and fear) were associated with low mean score of different domains of QOL. Conclusion: Our findings indicated that increasing HIV/AIDS-related stigma decreases QOL in PLWHA in Iran. Attention toward decreasing stigma, improving healthcare plan, and cultivating economic condition should be given high priority to ensure improvement in total QOL and corresponding domains in PLWHA's life.
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HIV/AIDS is considered as one of the most demanding public health problems faced by the country. It is a public threat and needs collective efforts in addressing the issue. In this line, a study was conducted among 30 people living with Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) in Chennai, Tamilnadu, India to study the challenges faced by women living with HIV/AIDS during the lockdown COVID 19 Pandemic in India. The data was collected with the support of the International Alliance for the Prevention of AIDS (IAPA) India, Chennai. In this study, descriptive research design and Simple random (lottery method) sampling technique was adopted. The researcher designed a questionnaire comprising both structured and semi structured questions along with “Depression Anxiety Stress Scale (DASS) – 21 item” standardized scale to obtain the data. The study shows that 76.7 percent of the respondents felt depressed because they do not have income to support their family needs and 53.3% shared that they are living in fear of HIV/AIDS and now during lockdown fear of survival is another painful one. Social work revolves around service, but is inherently interdisciplinary in nature. In this study Seven-Stage Crisis Intervention Model by Albert R. Roberts and Allen J. Ottens, was used for intervention. It was found after intervention that the p value of Depression, Anxiety and Stress is 0.00, which is less than the significance level of 0.05, hence the null hypothesis is rejected. Thus the results after the intervention showed that there was a visible decrease in their depression, stress and anxiety level. Keywords: HIV/AIDS, COVID 19 Pandemic, Depression, Social Work Interventions
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Worldwide, HIV-related stigmas had been acknowledged extensively in the literature; real time challenges of stigma faced by HIV infected patients in Indian context were understudied. The National AIDS Control Organization contributed a lot to achieve Quality of Life among People living with HIV with free Antiretroviral Therapy in India; however, underutilization of such facilities by HIV infected patients due to existing stigma showed low quality of life and poor mental health which worsen their diseased condition. This review addressed where and how stigma has formed in India since social beliefs, ethics and moral values are related to cultural backgrounds.
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While taking antiretroviral therapy, 30%-60% of people living with HIV (PLWH) experience neurocognitive impairment (NCI). To determine NCI prevalence among Iranian PLWH, by the computerized Vienna Test System, 63 adults living without HIV and 63 Iranian PLWH aged 18-50 years (M = 35.3, SD = 7.9) were assessed for cognitive function. NCI was determined by receiver operating characteristic curve cutoff points based on the adults living without HIV. Associations between demographics, HIV serostatus markers, and mean T-scores were investigated. Performance differences were tested by including significant covariates in an analysis of covariance. NCI prevalence rates were 57.14% in PLWH and 19.05% in adults living without HIV. Global neurocognitive performance and all cognitive domains were significantly different between the groups, except for visual memory and selective attention. In Iran, NCI prevalence parallels that reported in PLWH worldwide. There should be a strategy to screen Iranian PLWH for NCI.
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Background: HIV/AIDS remain a major public health concern in Nigeria. People living with HIV/AIDS (PLWHA) face not only personal medical problems but also social problems associated with the disease such as stigma and discriminatory attitudes. This study provides an insight into HIV/AIDS related stigma and discrimination against PLWHA in Nigeria. Methods: The data for this study was extracted from the 2013 Nigeria Demographic and Health Survey conducted by the National Population Commission. All men and women aged 15-49 years, permanent residents and visitors of the households were eligible for the interview. Several questionnaires were used in the survey, some covering questions on HIV/AIDS. Results: A total of 56 307 men and women aged 15-49 years participated in this national survey. About half of the population in Nigeria have HIV stigma. Younger persons, men, those without formal education and those within poor wealth index are more likely to have stigma towards PLWHA. In addition, married people are more likely to have stigma on PLWHA and are more likely to blame PLWHA for bringing the disease to the community. Also about half of the population discriminates against PLWHA. However, those with higher levels of education and those from higher wealth index seem to be more compassionate towards PLWHA. About 70% in the population are willing to care for relative with AIDS, even more so among those with higher level of education. Conclusion: There is a high level of HIV stigma and discrimination against PLWHA in the Nigerian population. Education seems to play a major role in the society with respect to HIV stigma and discrimination against PLWHA. Educating the population with factual information on HIV/AIDS is needed to reduce stigma and discrimination towards PLWHA in the community.
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Stigma and discrimination among patients with HIV/AIDS cause various problems for the patients and their health systems. The purpose of this study was to explain the perceived experiences of the patients from stigma and discrimination and their roles on health-seeking services among patients. This was a qualitative research using content analysis approach and semi-structured interviews, conducted on patients living with HIV/ADS, during 2013 - 2014 in Iran. Sampling started purposefully and continued in a snowball. The experiences of patients with HIV/AIDS from stigma and discrimination led to exploring three main themes and nine subthemes. The main themes were multidimensional stigma, rejection, and insult and discrimination in receiving health services. Stigma and discrimination play an important role in patients' lives and hinder them from accessing the treatment. The patients' responses to this event by secrecy strategy can be an important factor in the disease prevalence.
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Background: Stigma and discrimination are among the main barriers for health workers to provide appropriate and necessary services
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This pilot study is the first to evaluate stigma-reduction intervention in a healthcare setting in Egypt and in the Middle East and North Africa region. It also contributes to knowledge on how to address stigma in low-HIV prevalence settings. A quasi-experimental study design was used to evaluate the effect of anti-HIV stigma intervention in one hospital in Egypt. A control hospital was selected and matched to the intervention hospital by type, size and location. The intervention focused on HIV-related stigma, infection control and medical ethics. Stigma was measured at baseline and at three months post-intervention. A standardized, 10-point scale was developed to measure stigmatizing attitudes and fear-based stigma among participants. Comparisons of overall and job-stratified stigma scores were made across the intervention and control hospitals, before and after the intervention, using two-sample t-test and multivariate regression analysis. Mean stigma scores did not reveal significant differences between the intervention and control hospitals at baseline. After intervention, the overall value-based and fear-based stigma scores were significantly lower in the intervention hospital compared to the control hospital (2.1 and 1.1 compared to 3.8 and 3.2, respectively; p < .001). Context-specific and culturally appropriate HIV stigma-reduction interventions in low-HIV prevalence settings can reduce fear-based and value-based stigma among physicians and nurses.
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People living with HIV (PLWH) continue to endure stigma and discrimination in the context of health care. This paper presents the findings of a qualitative study designed to (a) describe stigmatizing and discriminatory practices in health care settings, and (b) explore both symbolic and structural stigma from the perspectives of PLWH. For the purpose of this qualitative study, 21 semi-structured in-depth interviews were conducted in the province of Quebec, Canada. The data were analyzed following the principles of thematic analysis. During analysis, three themes were identified, and relations between these themes were delineated to reflect the experiences of participants. The findings suggest that HIV-related stigma in health care settings is episodic in nature. The findings also suggest that HIV-related stigma is experienced through interactions with health care providers (symbolic stigma) and, finally, that it is applied systematically to manage risk in the context of health care (structural stigma). Copyright © 2015 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.
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People living with HIV (PLWH) are often subject to discrimination. The causes, types, and consequences of this stigma in Iran are not yet fully understood. In-depth, semi-structured interviews were held with a purposively selected group of 25 PLWH recruited from a triangular HIV clinic in Kerman, Iran. Almost all participants reported experiencing internal and external stigma in a variety of contexts. Participants mentioned at least three major types of internal stigma (silence, shame, and feeling miserable). PLWH also reported experiencing external stigma from their families, communities, and the health care system. While previous studies have demonstrated that the Iranian public has reported fairly positive attitudes toward PLWH, our participants’ experiences tell a different story. Therefore, it is imperative to engage both public and private sectors in continuing education programs to reduce the level of stigma faced by PLWH.