Table 1:
Insight 1: Social stigma may be feared as much as the disease. |
Design Opportunity 1: Make TB treatment discreet by avoiding non-conspicuous labels and visuals. |
Theme 1a: TB is a highly stigmatized disease. Quote: “Now TB is a disease that brings stigma…Once they are diagnosed then they must use separate cups, they must not interact with community members, until after a period of time. So people fear… They will be isolated from the rest.” – HCW |
Theme 1b: Patients hide their diagnosis and any TB-related artifacts from their communities. Quote: “I haven’t told anyone, not even my husband…I decided to stay silent…. I decided not to say anything because for him he thinks that anyone who has TB has HIV as well. I fear if I told him he would stop supporting my family.” –Patient |
Theme 1c: Being associated with TB is a barrier to treatment. Quote: “…they don’t want to be seen [with TB medicines] so they put it somewhere else.” –Patient |
|
Insight 2: Packaging is used as an ad hoc and accidental reminder system. |
Design Opportunity 2: Guide sequential pill taking behavior and accurately track treatment milestones. |
Theme 2a: Empty pill packages are used as prompts to return to clinic. Quote: “I don’t keep appointments at all…my last appointment was in July, but I still have drugs, so I didn’t go” –Patient |
Theme 2b: Patients have no formal reminder system for tracking daily treatment. Quote: “The children are always encouraging me to take the pills and…if they don’t remind me, I forget to take them”– Patient |
Theme 2c: Patients may not systematically take their medication in order. Quote: “Ugandans take pills wherever their finger falls.” [Health worker moves finger all over the blister pack] –HCW |
|
Insight 3: Health is defined by a return to normal strength and capability, which occurs before treatment completion. |
Design Opportunity 3: Reinforce the importance of treatment completion to sustain health at every point of contact. |
Theme 3a: Ugandan patients prioritize strength, productivity and the ability to work. Quote: “After I finish my treatment, I was hoping…to continue to pursue my career by then…” –Patient |
Theme 3b: Treatment adherence declines when patients feel better. Quote: “At the beginning I used to take it well but when I started feeling better…I started giving myself some breaks.” –Patient |
|
Insight 4: Feeling a personal connection with healthcare workers is as important as receiving medical care. |
Design Opportunity 4: Leverage the relationship between patients and community health workers to personalize the treatment experience. |
Theme 4a: Patients trust and rely on healthcare workers. Quote: “My health worker’s voice is the best… I want to listen from the health worker is asking me how [I] am feeling.” –Patient |
Theme 4b: Patients want to please and be praised by their health workers. Quote: “He is most happy if the health worker says he is healthy and better.” –Patient |
|
Insight 5: Local messages feel authentic; endorsements by famous figure heads are viewed with suspicion. |
Design Opportunity 5: Incorporate authentic and personal adherence messages from the local community in the TB treatment program. |
Theme 5a: TB-related messages from celebrities and politicians are not trusted. Quote: “If a TB patient showed another patient all they got was a picture [of a celebrity] they might say ‘this is all I got!’…they have had problems with people getting conned so you must make sure people don’t think it is a con.” –Community Leader |
Theme 5b: Patients are motivated by messages from health workers and community members who have been cured of TB. Quote: “[Audio messages should come from] The health worker - a message about recovering, around getting cured.” –Patient |
|
Insight 6: Patients are motivated by service to their community, but do not have enough knowledge to be maximally effective. |
Design Opportunity 6: Empower individuals to be community stewards of infection control practices through language and literacy appropriate education. |
Theme 6a: Patients want to protect their family and community from TB. Quote: “…I don’t know how I can protect him as my friend, how I can protect the next kin to me, how I can protect the next sister to me…” –Patient |
Theme 6b: Patients want to be knowledgeable about TB. Quotes: “They always ask about infection control, in particular – sharing plates and cups...Even patient co infected are wondering about all the drugs, won’t they affect me? Or about the side effects, can I stay together with my spouse/children, about the household, the other big question is will I be cured?” –HCW |
|
Insight 7: Words and visuals can have multiple interpretations and an unintended negative impact on adherence behavior. |
Design Opportunity 7: Communicate clearly and accurately with simple graphics and culturally and linguistically appropriate text. |
Theme 7a: Patients interpret instructions literally. Quote: “Someone who had nothing to eat so they stopped [taking med] because they couldn’t take on an empty stomach.” –HCW |
Theme 7b: Patients lack accurate and sufficient information to around TB. Quote: “One must have enough food to take the treatment. Someone will say please I don’t have food to take this treatment. Next time they missed the treatment so they say it is b/c I didn’t have anything to eat.” –HCW |
Theme 7c: Unfamiliar or outdated words or visuals were confusing to patients. Quote: “We don’t say medication, we say tablet.” –HCW |
Abbreviations: TB, tuberculosis; VHT, village health team; HCW, health care worker