Table 2.
Psychosocial Barriers to Care from the Perspectives of 11 Healthcare Providers and 51 Patients
| Row | Barrier | Stakeholder Characteristics |
Representative Quote |
|---|---|---|---|
| Internal Stigma | |||
| 1 | Blame | Doctor | It is considered as a disease of lifestyle and people are discriminated because of their choices…people consider those with HIV to be of poor model values. |
| 2 | Patient; Male (Interview) | People tend to judge you if you have HIV. They think that you did not do the right thing and that is the reason you are HIV positive. Therefore, people become afraid to be open about their HIV status. | |
| 3 | Patient; Male (Focus Group) | You may tell [family members] that you are HIV positive, and you find that they blame you for being HIV positive…They forget that it doesn’t matter whether you have been careful or not, and they even forget that you have been in a relationship with someone that you trust, and you have been faithful to your partner but still you got this disease. | |
| 4 | Denial | Counselor | When we are teaching patients about stigma, we normally divide it into two: we say that it’s internal and external stigma. There’s nothing you can do with external stigma, but you can do something with internal stigma. Because internal comes from not accepting yourself and when you are not accepting yourself, you think that other people are not accepting you too. |
| 5 | Patient; Female; 31 (Interview) | It took me a very long time to accept. I felt as if I could not mix with other people. I was the first person to discriminate against myself. | |
| 6 | Patient; Male (Focus Group) | People are…scared to visit the doctors when they are sick. And many people are just scared to test for HIV…So, they just don’t act and they do not do anything about their illness, and at the same time they are suffering inside because the disease is not quiet. It is affecting them internally and it is not obvious from outside… they are suffering from the stress. These are some of the things that are killing people. | |
| 7 | Fear of Discrimination | Counselor | Stigma is one of the reasons why people chose to go to the clinics further from home…They choose to go to a place where they think there won’t be many people that know them. |
| 8 | Patient; Male; 24 (Interview) | When I came [to this hospital], I met so many people that I know. Some of those people are also working here…I was…concerned about what they were going to say. | |
| 9 | Patient; Male (Focus Group) | The main challenges are in local clinics because people have a problem that their private matters would be known by the neighbors… your neighbors could see you going to the clinic and they talk about it… | |
| External Stigma | |||
| 10 | Interpersonal Discrimination | Counselor | When you are at home and you are listening to your family members and they are telling you that one of your family members is infected with the virus we will chase the person away. So even if the person can be diagnosed it won’t be easy to disclose to the family members due to the fact that she knows they will be thrown away… |
| 11 | Patient; Female; 44 (Interview) | It can prevent you from getting medical care because you do not feel like a human being anymore. It could be as if you have already died even though you are still alive…you observe that your family dislikes…even to be around you… they just keep you in a certain place in the house and you find that you have not bathed, you have not eaten but you are sick. | |
| 12 | Patient; Female (Focus Group) | My sister passed away…We did not know that she was HIV positive at home because she kept it secret…when my sister went home, my mother was chasing her away… it happened about four times…I had to go home and to tell my mother that my sister is going to stay at home…in the outside room… Even on the day when my sister was going to be buried and we were supposed to bathe her, my mother said that we must not open her coffin because her HIV disease would spread all over. | |
| 13 | Involuntary Disclosure | Patient; Female (Interview) | This woman came with the child [to the clinic]… After this woman left, the one left behind is now talking…‘This is her sister’s daughter who came for treatment and this child lost her mom and her mom died of this disease as she’s also taking treatment.’…she’s telling people she doesn’t know, it’s not her business…By the time you leave here, your neighbor will be talking about you… |
| 14 | Patient; Male (Focus Group) | I disclosed my HIV status to my sisters. But after that they told a non family member and that person started talking about me and he/she told other people. | |
| 15 | Institutional Discrimination (Healthcare) | Patient; Female (Interview) | One day I went to the clinic…and the sister who came stood there and…talked and talked about us Black people… ‘I don’t know what happened here this month because out of everybody who tested, only two were negative and everybody who was here was positive….So when I…had this STI and the sister shouted at me…“this man of yours, why didn’t you tell him…”…she was Coloured … she shouted at me and after that she went out to wash her hands and she did all the things that show stigma. |
| 16 | Institutional Discrimination (Workplace) | Patient; Male; 24 (Interview) | After you have disclosed your HIV status to your employer, things begin to change on how they treat you at work. If you cough, you see that their reaction has changed…By the time you start getting sick, you find that your employer has already distanced him/herself from you. |
| 17 | Focus Group Participant; Female | Some employers say that you must go and stay at home when you get sick because your illness is affecting work negatively. They encourage you to resign if you disclose your HIV status. Sometimes they become so harsh and change their attitude…They try to find a way to fire you. |
Note: Healthcare provider quotes are shaded grey.