People living with HIV focus group themes, description of themes and example quotes from HIV clinics in four districts of Uganda and Zambia in 2024
| Theme | Definition | Subthemes and example quotes |
| Stigma presence | Statements about any instances or experiences of stigma. | HIV Stigma “They don’t allow you to enter the toilet because you will leave AIDs there, they don’t allow you to move for even a meter. When you go to the market they will say see AIDs moving around see how AIDs looks, that is how we are described in the community (1).” “For me it was my movements that caused me to get HIV, that’s why I am here it was my fault (2).” “You lose interest in being alive (3).” Tobacco Stigma“We also experience tobacco stigma because we know that people do not like the odor that comes off us (4).” “It is worse [tobacco stigma] in public when people segregate you and you feel shy and stigmatized (5).” Cancer Stigma“For people who discover they have cancer, it is a big problem. They say you could be with a colleague who has cancer and you would smell a certain scent even if that person has bathed (6).” “The traditional healer will tell you that you are being bewitched (7).” “It is better to avoid the hospital care (8).” |
| Impact of stigma on cancer-related care | Statements about how stigma has impacted any engagement in cancer care for PLWH. | Engagement in Care “What they say in the community is that cancer is the worst sickness in the whole world, and it leads to death. This now brings fear. The fear is too much that they don’t go for a check-up because if they are diagnosed with cancer they might just die (9).” “Some of us have girlfriends here so we fear to come for treatment because we don’t want them to see or know we are HIV+. Then let’s say we have also been diagnosed with cancer! It is better if you die silently (10).” “I have fear of the testing mechanism for cancer. I wish they could only use blood to test for cancer instead of having to inconvenience someone by tough ways of collecting the sample for testing like cervical cancer screening (11).” |
| Structural factors related to stigma | Statements about structural challenges PLWH face in influencing stigma and access to cancer-related care. | Resource Challenges“When they say the word [Referral Hospital], fear takes over you because the transport money alone is a lot. You just decide and you choose to die, you just surrender to die though you need to try and go to the hospital (12).” “There is no diagnostic equipment in the regional referral hospital to detect cancer. Instead one must travel to the referral hospital which is several hundreds of kilometers away for screening and confirmation that they really have cancer (13).” Clinic Challenges“Fear of male health workers is a factor. When you reach the hospital and find that a man is going to check you, you will not accept it. For me I refused until a woman came (14).” “We go to different health facilities and the teaching we get varies. There are some clinics where they don’t teach you anything so you only go and get your medicine and go home (15).” Comorbid Conditions “For me I will not want to merge herbal and exotic medications from cancer. I am already on ARVs, I feel it might cause me more illness and complications (16).” |
| Strategies to reduce stigma | Statements about any potential strategies to reduce stigma and improve engagement in care for PLWH. | Strategies to Overcome Perceived Stigma“The most important thing is to sensitize people about stigma and also encourage people to accept and live with their positive status and people will be free (17).” Strategies to Overcome Impacts of Stigma“What can really help is that for those of us who are on medication, we need to be free and open with those who are not. That way we will find the needed help and there will be no more barrier, that person will understand the situation (18).” |
PLWH, people living with HIV.