HIV Stigma and Moral Judgement: Qualitative Exploration of the Experiences of HIV Stigma and Discrimination among Married Men Living with HIV in Yogyakarta
Abstract
:1. Introduction
2. Methods
2.1. Study Setting
2.2. Conceptual Framework
2.3. Study Design
2.4. Recruitment and Data Collection
2.5. Ethical Consideration
2.6. Data Analysis
3. Results
3.1. Characteristics of the Participants
3.2. External or Enacted Stigma
3.2.1. Stigma and Discrimination from Healthcare Providers
“…. The first time I was admitted to hospital X [pseudo name], I was left untreated at all, I hardly breathed at the time, the doctor knew that, but he did not do anything to help me. I did not receive any medical treatment for 10 days in the hospital” (R10, 48 years old).
“The problem with B20 patients like me is that the nurses, once our status is known to them [doctors and nurses], they seemed reluctant or unwilling to help us get better. They seemed lazy to treat me when I was in the hospital” (R13, 44 years old).
“…. I once experienced discriminatory treatment in the hospital, the doctor did not want to be close to me. He seemed very afraid to replace the infusion” (R18, 38 years old).
“…. The nurse who helped me at that time was so unfriendly. I was not comfortable at all. I felt that the nurse felt disgusted by my condition and did not want to touch me, the infusion hose was also thrown in front of me, so rude. There were a few nurses who I knew that they felt disgusted with HIV patients (R9, 27 years old).
“…. I once underwent blood check at a private laboratory clinic, the nurse wore disposable gloves, but after that she went back and forth, back and forth a few times to wash her hands. Oh my God…. should it be like that? It felt like I was disgusting” (R10, 48 years old).
Discriminatory behaviours led to perceptions among the participants that some healthcare professionals were not well informed about HIV and how to treat patients with HIV:
“…. The doctor did not want to treat me and was scared to change the infusion bottle. I was mad at the doctor, how come a medical doctor does not know information about HIV? They should know how to treat patients with HIV like me and do not leave patients with HIV untreated” (R8, 38 years old).
“I think healthcare professionals who are not specifically trained about HIV lack information and knowledge about HIV. The treatments from those who work in HIV clinic and the ones who do not are different” (R1, 29 years old).
“There are healthcare professionals who spread HIV status of patients: ‘This patient is infected with HIV, be careful …. I think they are the ones who are not well informed about HIV” (R4, 42 years old).
“…. I felt uncomfortable with the treatment of the doctor that handled me, so I was reluctant to go to the same hospital, I may meet her again” (R7, 34 years old).
“I was ashamed and asked myself why did they treat me so rude? …. After that I do not go the place [healthcare facility] anymore. …. I go to another community health center” (R16, 30 years old).
“…. I do not want to be served by the same person [nurse] who has treated me unfriendly, so I do not go there anymore” (R20, 39 years old).
3.2.2. Stigma and Discrimination from Community Members
“…. There are community members who keep their distance from me, this is very obvious. They moved away from me to other chairs and refused to sit next to me” (R4, 42 years old).
“There are some [community members] who said ‘he has this disease [HIV/AIDS], we may get infected’. They did not want to sit next to me at all ….” (R2, 42 years old).
“Discrimination against people living with HIV depends how well-informed community members are about HIV. In some villages it seems like the ratio of people who are not informed and the ones who are informed about HIV is 10:1. HIV-related stigma and discrimination are worse in such villages. They [community members] deem HIV/AIDS as a horrible disease” (P1, 29 years old).
“I am also involved in HIV programs and activities, including HIV information sessions for community members but we have not reached many communities or groups, and many people are not informed about this infection. This is reason why they stigmatise and discriminate people with HIV” (R5, 33 years old).
3.2.3. Stigma and Discrimination from Family Members
“When I was physically weak [sick] and admitted to the hospital, I felt like I was left and isolated by my family members: parents and siblings …. I felt isolated because all my personal belongings, eating utensils, and toiletries were separated from those of other family members” (R20, 39 years old).
“… Once I was tested positive with HIV, all the family members of my wife started to keep distance from me. It is so obvious: foods and plates are separated. They also avoid touching my clothes because they think it can be transmitted through sweat” (R3, 31 years old).
“… My parents and siblings were taught about HIV by the doctor who handled me and finally they accept me, I am welcomed in the family…. It is because I was accompanied by my mom once I consulted the doctor about the situation, I told the doctor everything I experienced in the family. The doctor said to my mom: “you do not need to separate eating utensils, they do not transmit the virus ….” I was so happy because after that they [family members] do not separate my eating utensils anymore” (R20, 39 years old).
3.3. Anticipated Stigma
“…. If other people know about my status, would I be accepted? That is what I am scared of. HIV is like a taboo thing for many people, especially people who know nothing about it. So, I keep it secret to secure the reputation of my family and avoid negative impacts on my children. I am afraid if my children are discriminated due to my HIV status” (R11, 43 years old).
“…. I think that getting infected with HIV is my fault, and this is my life. So, I am not sure that other people who I tell them about my HIV status understand and care about me. This infection is disgrace for me, and I think I do not need to let other people know about it” (R16, 48 years old).
“…. I heard that a friend died of HIV/AIDS and nobody wanted to bathe his body. His family members did not want to …. At the end, other friends who were companions of people with HIV [they are also HIV-positive] took the initiative to bathe the body. I also heard that nobody wanted to carry him to the cemetery because people were scared of being infected. …. So, I am afraid that if I am open about my status, I might experience the same thing” (R9, 27 years old).
“Another friend of mine died from AIDS in Bali, all his personal belongings and sleeping equipment were burned off. The same thing can happen to me as well, so I do not tell everybody about my status” (R1, 29 years old).
“My close friend died, and he was HIV-positive. Everybody in the village avoided and did not want to bathe his body, and even his own family did not want to do that and seemed to reject him. Two other friends of mine and I were the ones who bathed the body ….” (R15, 48 years old).
3.4. Perceived Stigma and Participants’ Individual Moral Judgement on their HIV Status
P (Participant): “Before I met other friends who are also HIV-positive I was ashamed of having HIV infection. But now if someone asks and he or she really wants to know then I will explain. But so far, nobody asks”
R (Researcher): How will you explain about it?
P: “I will explain that I get this infection not through sex but injecting drug use”
R: Do you think there is a difference between getting HIV through sex and injecting drug use?
P: “I will be so sad if I get it through sex because people will judge me as a bad person. If I am infected by sex workers, then that means I am a bad guy. But if I am infected through injecting drug use [sharing needle], then it is associated with male delinquency, so I will not think or be ashamed of it” (R10, 48 years old).
“I feel ashamed of having this infection because people must think that I have had sex with sex workers” (R6: 42 years old).
“…. I feel guilty, why I had done that [having sex with other men], it is forbidden by the religion. So, I do feel guilty because of that, I am a sinner” (R9, 27 years old).
“I feel guilty because of the stigma from the society that HIV/AIDS is the disease of people with dirty [amoral] behaviours. So, I am a dirty person, have a lot of sins” (R6, 42 years old).
“People perceive that HIV/AIDS is the disease of specific groups of people: transgender women, sex workers, and men who have sex with men. People may think that I belong to one of these groups” (R4, 42 years old).
“I am a sinner” (R9, 27 years old).
“I am a dirty person, have a lot of sins” (R6, 42 years old).
“I am a bad person because I did what I was not supposed to do” (R17, 51 years old).
“What I did [sex with multiple sex partners before marriage] was opposite to what I heard from the church, I am a very bad person” (R12, 41 years old).
“At the first time I was diagnosed with HIV, some family members questioned me “how do you get the infection?” And once they knew that I might have got it from any sex workers I had sex with, some said “you should not have done that, it is wrong, it is sin. You have done a wrong thing which is not allowed in our religion. I feel like I am a very guilty person, a sinner. I was long time ago but what they said still stays with me up to now” (R14, 42 years old).
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Characteristics | No. of Respondents n = 20 (%) |
---|---|
Age | |
<30 | 3 (15) |
30–39 | 6 (30) |
40–49 | 11 (55) |
50–59 | 1 (5) |
HIV diagnosis | |
1 to 5 years ago | 5 (25) |
6 to 10 years ago | 11 (55) |
11 to 15 years ago | 4 (20) |
Province of origin | |
Special Region of Yogyakarta | 13 (65) |
Central Java | 2 (10) |
Jakarta | 4 (20) |
Bengkulu | 1 (5) |
Education | |
University graduates | 5 (25) |
Senior High school graduates | 8 (40) |
Junior High school graduates | 4 (20) |
Elementary school graduates | 3 (15) |
Occupation | |
Supervisor in clothes shop | 1 (5) |
NGO workers (volunteers) | 1 (5) |
Café/restaurant waiter | 2 (10) |
Freelance photographer | 1 (5) |
Construction worker | 1 (5) |
Online motor-taxi drivers | 3 (15) |
Assistant in a motor-workshop (bengkel) | 1 (5) |
Entrepreneurs | 7 (35) |
Pet (birds) seller | 1 (5) |
Employees at private company | 2 (10) |
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Mahamboro, D.B.; Fauk, N.K.; Ward, P.R.; Merry, M.S.; Siri, T.A.; Mwanri, L. HIV Stigma and Moral Judgement: Qualitative Exploration of the Experiences of HIV Stigma and Discrimination among Married Men Living with HIV in Yogyakarta. Int. J. Environ. Res. Public Health 2020, 17, 636. https://doi.org/10.3390/ijerph17020636
Mahamboro DB, Fauk NK, Ward PR, Merry MS, Siri TA, Mwanri L. HIV Stigma and Moral Judgement: Qualitative Exploration of the Experiences of HIV Stigma and Discrimination among Married Men Living with HIV in Yogyakarta. International Journal of Environmental Research and Public Health. 2020; 17(2):636. https://doi.org/10.3390/ijerph17020636
Chicago/Turabian StyleMahamboro, Dionius B., Nelsensius K. Fauk, Paul R. Ward, Maria S. Merry, Theodorus A. Siri, and Lillian Mwanri. 2020. "HIV Stigma and Moral Judgement: Qualitative Exploration of the Experiences of HIV Stigma and Discrimination among Married Men Living with HIV in Yogyakarta" International Journal of Environmental Research and Public Health 17, no. 2: 636. https://doi.org/10.3390/ijerph17020636
APA StyleMahamboro, D. B., Fauk, N. K., Ward, P. R., Merry, M. S., Siri, T. A., & Mwanri, L. (2020). HIV Stigma and Moral Judgement: Qualitative Exploration of the Experiences of HIV Stigma and Discrimination among Married Men Living with HIV in Yogyakarta. International Journal of Environmental Research and Public Health, 17(2), 636. https://doi.org/10.3390/ijerph17020636