Experiences of stigma and discrimination in HIV
Fear of HIV status disclosure and subsequent stigma and discrimination was identified as a key concern of participants (adults and caregivers). The nutritional program was seen as potentially contributing to disclosure of HIV status through an increased frequency of visits to the service, and transporting, consuming and disposing of the nutritional support.
Status disclosure and fear of stigma and discrimination
All participant groups (health providers, adult patients, and caregivers) described the between the importance of HIV status disclosure and its association with HIV stigma and discrimination. The level of positive HIV status disclosure varied depending on the extent of concern of stigma and discrimination of the individual, where those with high concern had not disclosed to many or even any others, and those with less concern of stigma and discrimination disclosing their positive HIV status more broadly.
Those who were reluctant to disclose their positive HIV status expressed a high concern about potential stigma and discrimination related to their positive HIV status and its impact on their life such as rejection and abandonment. One participant presented her fear of disclosure of positive HIV status as follows:
About the stigma you said, I don’t want anyone to know me [positive HIV status] because there is a stigma. For this reason, I live and act like HIV negative (Adult female, age 29 #15).
Another participant living with HIV also expressed her fear of disclosure of positive HIV status to anyone as follows:
Even my elder daughter suspects me and asks if I have HIV but I always convince her that I didn’t have any problem. I didn’t tell her because it could harm her psychologically (Adult female, age 31 #1).
Others felt that disclosure of positive HIV status to family members had some benefits such as extra care during illness, financial support, and assistance with housework and other duties. There was, however, higher reluctance for disclosure of HIV status beyond family members due to potential stigma and discrimination in neighbourhood and community.
Four of my brothers know about my positive HIV status. None of my friends know about my positive HIV status. Nobody [neighbours] knows about me (Adult female, age 20 #10).
Concerns included gossip and denial of social support:
There is also gossip that may run behind and around you. Some also may insult you and harm you emotionally at times of disagreement (Adult female, age 29 #15).
Participants also reported fear of being expelled from their house and denial of sharing toilets, baths, and common utensils if positive HIV status was discovered by house owners:
Because in house rent we share a toilet, bathroom, and other associated issues. So, if the house owners know that you are HIV positive and using Plumpynut or ART medication, they could expel you from the house (Adult female, age 30 #4).
More women (seven out of the 12 female participants compared to three out of eight male participants) expressed concerns about negative social consequences or discrimination related to HIV disclosure:
“If people know about me, it will have an influence on my work in the market. People didn’t come and buy from you if they know their HIV status. If this happens, it will have to influence me and my children” (Adult female, age 29 #15).
A smaller number of adults and caregivers had disclosed their positive HIV status to a broader community and reported benefits such as getting support from friends, families, and others for their HIV condition. For example, one adult female said:
I am free with everybody and I didn’t hide myself. Everyone knows about me. So, I have not experienced any problem so far. I didn’t bother too much not to be identified by anybody (Adult female, age 37 #16).
While participants acknowledged improvements in stigmatising attitudes towards HIV, generally non-disclosure or limited disclosure of positive HIV status significantly affected the extent to which stigma and discrimination were mentioned as issues in relation to use of the nutritional program.
The nutritional program and stigma and discrimination
There were two key mechanisms by which the nutritional program contributed to stigma and discrimination among those attending the HIV clinics and using nutritional support – increased frequency of health service visits and the association of the nutritional support with HIV.
Enrolment in the nutritional program increased the frequency of visits to a health facility to collect the nutritional support and conduct nutritional follow up and monitoring. To collect ART and receive other HIV services, adults and caregivers visit a health facility once every three months. For those enrolled in the nutritional program, the frequency of visits needed to increase to monthly visits for a period of three to six months. This increase of visit frequency was seen by patients as increasing the chance of being seen at the service and hence their HIV positive status being disclosed:
“There are also individuals whom they don’t want to come more frequently to the clinic not to be seen by any other person whom they know” (Health provider, #2).
“Some say they can’t come every month because distance and even transportation is not a problem, they may be afraid of being seen by other persons as they visit the health facility frequently. They want to take it once for about three months or more” (Health provider #5).
In the community nutritional support is highly associated with HIV, particularly for adults. Being seen with the nutritional support in the community was thought to immediately raise suspicion of positive HIV status. This leads to challenges in relation to the transportation of the nutritional support, and the consumption and disposal of the empty sachets.
Some people relate it. For example, one of our drink shop client told me that the Plumpynut is given to HIV patients on ART. He told us that it is given to them for their ART medication (Caregiver, age 31 #5).
So, some patients enrolled in the nutritional program are worried of stigma and discrimination. Because the Plumpynut is seen as a food to be given to HIV patients in the community especially in the community (Health provider, #2)
The typical packing and bulky size of the nutritional support (Plumpynut/sup) are easily identifiable and revealing which made transportation difficult, as a number of participants highlighted:
I will not show them because instead of its own carton, I use a different bag to carry it home. So, nobody will identify it. When my neighbours ask me, then I pretend that it is cereal. I also don’t want anyone to know me that I am going to a hospital, to avoid stigma (Adult female, age 29 #15).
If some know that you are using the medication and Plumpynut because of your HIV status, there may be problems. People usually hide the Plumpynut during transportation and at their home especially when they live in a house rent (Adult male, age 54 #1)
Similarly, finding a convenient place to consume the nutritional support in private was a challenge due to the revealing nature of the packaging of the nutritional support and fear of being seen by others who would associate it with HIV, as the following account illustrates:
Even when I take the Plumpynut, I don’t want to show them (neighbours) at all. I consume and bring the empty sachet back to here (the health facility) because I don’t want to be seen. If there is a guest in my home, I will not use the Plumpynut but if there is no one, then I will use it. When using, I close my door to use my Plumpynut and ART medication. Why I did this is to avoid stigmatization. So, the only option I have is to use it like this (Adult female, age #29).
As alluded to in the above quote, the empty sachets were also seen as potentially identifying, and participants were concerned of being seen when throwing the empty sachets at home or anywhere else due to fear of disclosure of their positive HIV status.
My daughter had taken the empty sachet outside and our neighbours asked me from where I had brought it acknowledging that it is good food, but I didn’t respond for the question and I kept quiet (Adult female, age 25 #17).
For one family, the discovery of one of the children’s HIV positive status in this way had been devastating:
Yes, it is due to the empty sachet thrown that our neighbours identify us and asked him why he is eating it by that time. So, my neighbours usually don’t allow my children to play with them because they know our positive HIV status as well as I told you, he has refused to go to school because the children in his school don’t allow him to play with them” (Caregiver, age 35 #9.
Impacts of stigma and discrimination on the nutritional program
Stigma and discrimination contributed to the problems of effectiveness of the nutritional program in a range of ways. In this study fear of stigma and discrimination were found to contribute to the poorer outcomes from the program through refusal of the nutritional support, limited attendance at the service, and collecting the nutritional support and selling it in exchange of other foods.
Health providers identified that a fear of disclosure and stigma lead some patients to refuse to take the nutritional support:
They told me that they don’t want to take the Plumpynut and they only want to use their own home made food. This is because they don’t want to be identified as HIV positive. Because if you have Plumpynut, they are afraid that they may be identified as HIV positive. So, the most important is that the clients are afraid of being identified as HIV positive (Health provider, #6).
Adults also identified this as an issue amongst HIV patients:
Previously there was fear by HIV patients being identified and some patients were not using the Plumpynut at all (Adult male, age 45 #7).
…others even though they are told to take it, they refuse to do so. The reason for this is the issue you raised it (the Plumpynut box) is big as well everybody knows it. There are individuals who doesn’t take it (the Plumpynut) at all. The reason they fail to take it is because of the issue you raised (stigma and discrimination) but I don’t know about others (Adult male, age 47 #22).
Health providers likewise identified that some patients also limited their attendance at the service to reduce the chance of being seen and subsequently identified as HIV positive:
There are also individuals whom they don’t want to come more frequently to the clinic due to fear of being seen by other persons they know (Health provider, # 2).
Some patients see some improvement when they take the nutritional support after starting the second month. Because of this, they prefer to stop and don’t want to come to this clinic monthly. You know coming to this clinic is also one reason patients don’t want to happen frequently because they may be identified or seen by some they know. So, most patients don’t want to come more frequently. They believe that they may be identified as HIV patients by someone and leads to stigma and discrimination (Health provider, age #6).
Selling of the nutritional support in order to purchase other foods due to fear of stigma and discrimination was also identified as a way that stigma was negatively influencing the utilisation of the nutritional program in HIV care. A caregiver stated this problem as follows:
People sell the nutritional support because they are afraid of being identified as HIV patients because of fear of stigma. It is now sold up to 6 Birr (Caregiver, age 41 #14).