Decreased internalized stigma
A process of reduced self-stigma was frequently experienced by ART users participating in this study. Reports about "feeling like an ordinary person" were often expressed by both men and women and especially by residents of the trade centre.
"I just felt good because this disease has now become like an ordinary disease" (female, roadside area)
The actual or expected positive outcomes derived from being on ART played a major role in helping individuals to overcome internalised feelings of shame ("aibu").
"... you will stop being embarrassed. Do you want me to die? So you stop feeling shame. You do away with shyness" (group activity, females from roadside areas)
The increased public profile of PLHA in the media and interaction with other patients at the ART clinic contributed to greater awareness about how widespread the disease was and to a comforting realisation of"not being the only one".
"I see that just as usual...because I am not the only one...it is not at one family. Now it is the whole of Tanzania" (female, roadside area)
"It's not me alone. There are so many people too. In fact they are many. Others are even older that I am. Ee, it's many, you see, so I continued encouraging myself" (female, roadside area)
In addition to acknowledging the significant numbers sharing the experience of HIV, participants highlighted their growing awareness that AIDS could affect a wide range of community members, including people deemed "innocent" and "respectable", which presumably indicated those who did not exhibit characteristics or behaviour usually associated with the shame ascribed to the disease.
"Later I perceived it to be just normal. Normal...because this is not a disease that's perhaps to me alone. You see it advertised on newspapers, it takes even the members of parliament and we see it" (male, roadside area)
"I felt just better because at the beginning we hadn't seen such a number of children also having the virus while they don't even know about sexual matters or anything" (female, roadside area)
Respondents also identified emotional support from health service providers and other ART users as playing a significant role in easing anxiety and treating HIV as any other manageable disorder found in the community.
"Many patients come here stigmatizing themselves psychologically. We explain and educate them... after they see that crowd of people they agree and even apologize: 'I thought it was only me, but this problem is just normal and we are many"' (service provider, ART clinic)
"The doctor told me: 'you have been infected with the disease'. After I received good instructions it encouraged me. I stopped worrying. It's when I got courage that I should perceive it to be just a normal thing" (female, roadside area)
"We reassure the patients that there is no problem: 'there are so many people like you. This service is like the service on diabetes, heart patients'..." (service provider, ART clinic)
This process of "normalisation" had three demonstrable positive outcomes: (1) facilitating HIV status disclosure, (2) stimulating VCT uptake, and (3) helping ART users cope with enacted stigma and sustain treatment.
Some study participants mentioned that they had disclosed to family membersonly after having initiated therapy and a few described how the "normalisation" of HIV had facilitated the process of disclosure and their acceptance within their own families.
"I felt that I should involve my relatives. I told my brother, my father. I also told my sister-in-law. She told me that I should just be calm, 'you just get treatment, this has become just like fever, you shouldn't look back"' (female, roadside area)
"...after returning there (ART clinic) I started involving her (wife). We would go there often with her and other patients and I would show her: 'all these are suffering from the same disease'... gradually she started perceiving it to be just normal" (male, roadside area)
"He (brother) just gave me hope because I am not the only one. There are just many people who are in that condition and they are continuing to live. There is hope because being affected is not the end of life" (male, roadside area)
"The catastrophe is now for everybody, I can't keep it to myself, I have to tell my relatives... They just said that this disease is now a disease for all the people" (female, roadside area)
For some however, the fear of admitting their status persisted and reflected the very real negative consequences that could ensue:
"I told him and he said: if you are in that condition then we will have to separate" (female, remote rural area)
The positive effects of initiating therapy and the reduction of internalized stigma led some ART users to successfully advise others to undergo HIV testing and initiate treatment.
"I had to tell him/her because you know there is no problem. S/he said I will go to check too" (male, remote rural area)
"A neighbour told me that he had been using them for a long period. He took me there...I started using these drugs and until now I am continuing using them" (female, roadside area)
Finally, many clients reported how the reduction of internalized stigma helped them cope with community-level stigma and sustain treatment.
"You just ignore them. You know you are sick. Why should you listen to him/her? You have only to ignore him/her. What I care is only to go to get the drugs. Let him/her talk...definitely they will say something but I will just continue taking the drugs" (female, roadside area)
Persistence of enacted and anticipated stigma
In spite of the reduction of internalised stigma and the trend towards a "normalisation" of HIV, participants sometimes referred to having been excluded, mocked, feared and blamed by members of their community. AIDS was still perceived as an avoidable "moral disease" associated with unacceptable sexual behaviour and PLHA were consequently judged to be personally responsible for contracting HIV. While burden-related stigma as well as the fear of HIV transmission through casual contact had decreased, blame-related stigma persisted in spite of the generalised epidemic and the availability of ART.
Only a few cases reported experiencing severe stigma at home compared to those reporting discrimination from community members. However, when stigma was experienced within the family, its consequences could be harder to overcome and even result in treatment interruption.
Participants often referred to a wide range of attitudes towards PLHA in this community, with this heterogeneity making it difficult for them to predict the stigma they might face in the event of disclosure. The unpredictable nature of these responses contributed to persistently high levels of anticipated stigma, and prevented some participants from disclosing their HIV status.
"You find some pointing a finger at you: 'that one has AIDS', they are stigmatizing us, but others see it just as malaria fever" (female, roadside area)
"I didn't tell anyone...because I felt that if I will tell someone, most of the people are not good, there are some who will keep on talking things about you. There are others who may see that as something strange, another may feel sad for someone. You can't know" (male, remote rural area)
Anticipated stigma contributed to explaining the resistance of some family members to accept the HIV status of a relative. Witchcraft seemed to be a more sociably acceptable explanation for the disease and a few people believed that HIV could be cured through prayers. Family-level "denial" could heavily influence individuals' health-seeking behaviour, preventing HIV testing and even leading to attrition from the ART program.
"...that family isolated him/her. They used to attend him/her thinking that s/he was bewitched but since then I have to attend him/her myself" (service provider, HBC organisation)
"My husband suffered and his relatives took him to traditional medicines...I begged him till he agreed (to test), his relatives were refusing"(female, roadside area).
"He/she comes to tell you again: 'I was told at home...that I should not go to hospital but I should go to church"' (service provider, HBC organisation)
Condom use was stigmatised by association with illicit sexual activity, providing evidence of the widespread perception that HIV was a result of degrading behaviour.
"If you tell a woman about condom. she will think that you have regarded her to be garbage" (male, roadside area)
Finally, it is worth highlighting occasional reports that pointed to ART availability as a factor that could potentially feed into existing community-level stigmatisation of PLHA as a consequence of their regained health and perceived increase in sexual activity.
"I just used to hear that they have brought medicines for increasing life, now that fear: why do they bring us those medicines? People taking them will continue to do evils and spread it. But I didn't know that I too was infected" (male, roadside area)