Table 5 Use of the CARD analytical framework to design stigma interventions informed by community-based stigma assessments
Card domains and themes | Illustrative quotations | Researcher recommendations for applying components to a stigma intervention |
|---|---|---|
Constraints | ||
– Internal stigma – Anticipated stigma – External stigma | “I told myself that people who can get TB are smokers, people who work in cold places. I never thought that I would get TB.” "What is so and so going to say when I'm on the side of people with TB, who are taking the TB treatment?" “There were no people coming to my house when I was sick” | Individual counseling for all TB patients is needed, including messaging that TB can happen to anyone and should not be seen as an indictment of someone’s worthiness, and discussion about how to address the anticipated and external stigma that may arise |
Constraints – Intersectional stigma: HIV, alcohol use, gender | “If you lose weight then they assume that you have HIV. They would say you might have HIV and you should go and get tested.” “He was drinking alcohol and he died.” “Us man people, we are worse. We are embarrassed to go to the clinic and take treatment” | Integrated TB/HIV stigma counseling and targeted education campaigns can educate communities on risk factors for TB and reduce intersectional stigma The use of risk screening strategies can help identify people with alcohol or substance use at risk of poor outcomes, alongside messaging that anyone can develop TB Gender-tailored care engagement approaches should address differences in stigma for men and women |
Constraints – Socio-economic barriers and exacerbation of these due to TB | “I struggled when it comes to food and I am still struggling now because I am not working.” "I don't have money, I don't have anything to eat. If I take these pills, they make me sick" | Interventions should incorporate components such as food or transport vouchers Information and assistance with obtaining social support should be available to TB patients |
Actions – Disclosure decisions varied depending on anticipation and experiences of enacted stigma | “[On the topic of telling friends about their TB] I knew that they were going to gossip about me.” “No! I never had any problem at all with telling them, I was free, free, free, they also know, they used to help me, my family encouraged me” | Interventions should include members of a PWTB’s social network, such as family-centered counseling (for example family workshops and home visits to strengthen individual support networks) |
Actions – Stigma resilience demonstrated by understanding TB can affect anyone | “I didn't fear anything when it came to that [decision to seek healthcare], I just thought everyone can be infected by TB.” “I was telling her that she [child with TB] is not the only one that has TB. There are a lot of people that have TB.” | Education on the universality of the risk of TB infection can support de-linking TB infection with blame for persons infected Support groups among PWTB can facilitate co-learning from disclosure experiences |
Risks – Depression – Care disengagement more likely due to impacts on mental health | “I had nightmares. Sometimes I had a dream of being buried. Maybe if I knew how depression starts, maybe I would say it was starting because there was a time where I didn’t want to be around people, I wanted to be alone. And sometimes, I didn't even take those pills.” “Once a person has started treatment, we go around talking about them, saying that "So and so has TB". This person is even afraid to leave the house, to go to the clinic.” | Support groups among PWTB can facilitate co-learning and knowledge sharing on coping mechanisms to mitigate the risk of depression Integration of screening and referral for mental health conditions into routine TB care can further ensure that PWTB is supported |
Risks – Disease severity | ‘People don’t have hope. When people talk about TB, they would say that a person will die or say a person won't survive. When I heard a certain person has died, and they had TB, I had that fear within me that "Wow! I also have TB" | Counseling mechanisms including support groups and connection with TB survivors can help ensure people with TB are better informed on the outcomes of TB treatment and survival rates |
Risks – Fear of infectiousness and transmission | “People who were my friends, who I used to help, isolated themselves from me.” “I think he [child with TB] was also scared to go play with them since people say that TB is infectious.” | Family workshops to provide education at the household level and community education interventions can support better understanding at the interpersonal and community level on infectiousness and transmission |
Desires – Counselling, including specific roles for peer counselors | “I would say that they [counsellors] are needed, but should be someone who has experience of what you are dealing with, who has felt the pain you would be feeling like the side effects.” | Counseling mechanisms including support groups and connection with TB survivors can help to ensure that people with TB feel supported as they undergo treatment |
Desires – Education for health workers and communities | I said to the doctor "You educated people have a name saying ‘default’. You're mistaken. I didn't default, I'm just not well" “I listen a lot to the things being taught at the clinics. We could have a venue where people will be invited to be taught about TB.” | Educational campaigns can reduce misinformation and associated stigma, for example, targeted education and training for health workers or community campaigns can reduce stigma |