Table 2.
Types of stigma experienced by people living with NTDs in Tchikapa, Kasai province, DRC
| Type of stigma | Experiences of people living with NTDs | Supporting quotes | |
|---|---|---|---|
| Felt stigma | Internalized stigma | Felt ashamed, associated disease to spells, isolated from the public. Compared skin to rotten fruits |
“They are worried to have developed leprosy in their body, some think that it is due to the fact that people have cast on them the spells, and others think that is sorcery. Most of those people are ashamed of suffering from leprosy”. (KII, health professional, Kasai) “This is a picture of a lemon and two mangoes, A healthy mango and a rotten mango. These 3 fruits represent my life, before the disease, my organism was like a good mango. With the disease, my skin had become like the skin of a lemon. Currently my organism is comparable to this rotten mango”. (Photovoice, male with LF, Ngombe) (Supplementary Figure S2) |
| Internalized stigma was endorsed by health professionals | “Well, these people have to accept their condition, very often, they consider themselves as destitute people. I think that the challenge is to accept their condition and to make them become autonomous in order to be useful in society”. (KII, health professional, Tchikapa) | ||
| Anticipated stigma | Fear of being discriminated upon | “It is the image of a road. When I was in good health, I went everywhere without any problem. Today I am no longer able to move freely because of the mockery due to my disease”. (Photovoice, male with LF, Tshisele) (Supplementary Figure S3) | |
| Enacted stigma | Excluded for fear of being infectious |
“They are excluded because they are contagious, people don't want to get the diseases when they come to them”. (KII, community member, Ngombe) “With my illness, the few times I've exhibited an item for sale, no one comes close to buy for fear of being contaminated”. (Photovoice, female with leprosy, Ngombe) (Supplementary Figure S4) |
|
| Termed ‘sorcerers’ who do not deserve care | “Our communities incriminate them to be sorcerers, they do not care about saving you, they put you aside, you are not useful for the society, you are unproductive”. (KII, health professional, Tchikapa) | ||
| Rejected from work | “Right now, I can't do it (work in diamond extraction site) anymore because of rejection from others. They don't want to work with me anymore because of my (ill) health”. (Photovoice, male with leprosy, Tshisele) (Supplementary Figure S5) | ||
| Being useless to society was accepted by health professionals | “The experiences are that an illness makes the person crippled, hence poverty, blindness, filth and dependency follow. In short, he becomes useless to society”. (KII, health professional, Tchikapa) | ||
| Intergenerational stigma | “They are ducks. These ducks belong to me. When they go to the neighbouring premises, they are chased. Similarly, my children are chased away by my neighbours saying that they have leprosy like me, their father”. (Photovoice, male with leprosy, Ngombe) (Supplementary Figure S6) | ||