Table 3.

Adapting the 26-Item Scale for Chronic Illness (SSCI) into an 8-Item SSCI for English/Swahili Speaking TB Patients

No.	26–Item SSCI	Adapted 8–Item SSCI for TB-related Stigma	RATIONALE/JUSTIFICATION
1	†You felt embarrassed in social situations [Q7] (8/20) †You worried about other people’s attitudes towards you [Q10] (3/20) *You were unhappy about how your situation affected your appearance [Q12] (20/20: 10 unhappy; 10 fine) †You felt embarrassed about your situation [Q16] (5/20) †You felt embarrassed about your speech [Q18] (6/20) †You felt different from others [Q19] (1/20)	You were unhappy about how TB affected your appearance? *Reference to how TB affects appearance [20/20 interviews] †Unhappy about appearance (10/20); Fine with appearance (10/20)	We noted redundancy in questions 7, 10, 12, 16, 18 and 19 of the original SSCI from the patients’ responses. Question 12 best captured aspects of embarrassment, unhappiness and the feeling of being different with regard to how TB affected the appearance of patients and was thus retained. Examples of unhappiness due to how TB affected patients’ appearance included coughing (coughing continuously in social gatherings, coughing when speaking, and coughing blood); weight loss (looking very thin); and skin changes such as altered pigmentation/itchy skin that were adverse reactions of TB treatment.
2	Some people have seemed uncomfortable with you [Q1] (3/20) You felt distant from other people [Q3] (4/20) You felt left out of things [Q4] (3/20) You felt embarrassed in social situations [Q7] (1/20) You worried about other people’s attitudes towards you [Q10] (1/20) You avoided making new friends [Q22] (1/20)	You avoided others for fear of infecting them with TB? Reference to avoiding others specific to fear of infecting them with TB [11/20 interviews]	Patients’ responses from questions 3, 4, 10 and 22 on the feeling of being distant/left out/avoiding making new friends centered on avoiding others for fear of infecting them with TB, a major factor identified to be associated with TB stigma promotion. We thus modified these four related questions and included the phrase on ‘fear of infecting them with TB’ to be specific.
3	†You felt distant from other people [Q3] (1/20) †Some people have seemed uncomfortable with you [Q1] (1/20) People made fun of you [Q6] (2/20) †You felt embarrassed in social situations [Q7] (1/20) †Strangers tended to stare at you [Q9] (1/20) †You worried about other people’s attitudes towards you [Q10] (3/20) †You were treated unfairly by others [Q11] (1/20) †You felt embarrassed about your situation [Q16] (2/20) †You felt embarrassed because of your physical limitations [Q17] (2/20) †You avoided making new friends [Q22] (1/20) †You worried that people will tell others about your situation [Q24] (1/20) † Responses to open questions (2/20)	You worried that you will not recover from TB/may die? Reference to TB treatment outcome of cure/non-recovery/death [20/20 interviews] †Worried will die/not recover: [13/20] Not worried i.e. positive about a TB cure [7/20]	A major emergent theme was fear of death or non-recovery apparent from unlikely questions such as 6, 9 and 10 and general conversation triggered by open questions. TB patients also recommended that a question on TB outcomes/treatment be included. We therefore included a new question specific to worry about death or non-recovery as there was no question on this in the original SSCI.
4	†It was hard for you to stay neat and clean [Q13] (4/20) *You worried that you were a burden to others [Q15] (20/20: 12 burden; 8 not a burden) †You felt embarrassed about your situation [Q16] (3/20) †You felt embarrassed because of your physical limitations [Q17] (6/20) †You tended to blame yourself for your problems [Q20] (2/20)	You worried that you were a burden (physically/financially/emotionally) to others? *Reference to burden[20/20 interviews] †Burden [12/20] Physical [8/20] Financial [7/20] Emotional [1/20] Not specified [2/20] Not a burden [8/20]	Questions 16, 17 and 13 were redundant with patients’ response centered on worry of being a physical burden. Patients distinguished that the context of being a burden went beyond the physical domain to include emotional and financial aspects, which patients distinguished. This worry of being a burden tended to result in patients blaming themselves for their problems. We therefore retained question 15 which captured the patients’ responses best and modified it to include a category for patients to explicitly clarify the type of burden they were experiencing as this was not captured explicitly in the original SSCI.
5	You were careful who you told about your situation [Q23] (20/20) You worried that people will tell others about your situation [Q24] (20/20) Responses to open questions (1/20)	You were careful who you told you have TB? Reference to being careful on TB status disclosure or worry that people will tell others: [20/20 interviews] Disclosure of TB status [17/20] Careful about disclosure [17/20] Worried that people will tell others [16/20]	Enacted stigma was influenced by disclosure. Disclosure of TB status was mainly influenced by the closeness of the friendship and HIV stigma. Question 23 and 24 were redundant and therefore question 23 was retained qualitatively and quantitatively.
6	Some people have seemed uncomfortable with you [Q1] (8/20) Some people have avoided you [Q2] (6/20) People were unkind to you [Q5] (3/20) People avoided looking at you [Q8] (3/20) You were treated unfairly by others [Q11] (4/20) You were careful who you told about your situation [Q23] (1/20) People in your situation lost their jobs when their employers found out about it [Q25] (1/20) You lost friends when you told them about your situation [Q26] (1/20) Responses to open questions (4/20)	Some people avoided you, for fear of infecting them? Reference to some people avoiding TB patients specific to fear of infecting others with TB [16/20 interviews]	Fear of infection went both ways. TB patients experienced being avoided by others stemming from the community’s fear of TB patients infecting them. Responses to this question also came up when questions 1, 5, 8, 11, and 26 came up implying redundancy. Avoidance occurred especially when patients had disclosed their TB status as from responses to questions 23 and 24. Question 2 of the original SSCI was retained and modified to include the phrase on ‘fear of infecting them with TB to be specific as done in question 2 of the adapted 8-item SSCI.
7	Some people have avoided you [Q2] (1/20) You felt embarrassed in social situations [Q7] (2/20) Strangers tended to stare at you [Q9] (2/20) You worried about other people’s attitudes towards you [Q10] (4/20) You were treated unfairly by others [Q11] (1/20) People tended to ignore your good points [Q14] (2/20) You felt embarrassed about your situation [Q16] (2/20) You felt embarrassed because of your physical limitations [Q17] (1/20) You felt different from others [Q19] (1/20) You tended to blame yourself for your problems [Q20] (2/20) You avoided making new friends [Q22] (1/20) You were careful who you told about your situation [Q23] (2/20) You worried that people will tell others about your situation [Q24] (2/20) Responses to open questions (3/20)	You worried that some people assumed you have HIV because you have TB? Reference to some people assuming you have HIV because you have TB [12/20 interviews]	HIV stigma was a major factor that influenced TB stigma and disclosure of TB status. This emerged from patients’ responses to questions 2, 7, 9, 10, 14, 16, 17, 19, 20, 22, 23 and 24, as well as responses to open questions. We therefore added a new question specific to the assumption of having HIV as there was no question on this in the original SSCI.
8	People were unkind to you [Q5] (17/20) You were treated unfairly by others [Q11] (17/20) People tended to ignore your good points [Q14] (16/20) Some people acted as though it was your fault [Q21] (14/20) *You were careful who you told about your situation [Q23] (17/20) *You worried that people will tell others about your situation [Q24] (16/20)	Some people did not support you (physically/emotionally/financially) because you have TB? Reference to lack of support of any kind because of having TB: [20/20 interviews]	Similar to the question on worry about being a burden, patients distinguished that lack of support was manifested in various forms: physical, financial and emotional. Although there was no question specific to lack of support in the original SSCI, patients responses to questions 5, 11, 14, 21, 25 and 26 addressed this major factor identified to promote TB stigma. *Disclosure of TB status to others increased this form of enacted stigma as evident from responses to questions 23 and 24. According to the TB patients, the closer the relationship, the more it hurt if there was lack of support. Similar to distinguishing the various forms of support, TB patients also distinguished the various types of relationships which fell into five general categories focusing on intimate, family and workplace relationships. The most extreme form of lack of support in a relationship was rejection/abandonment; or being fired from work. Although all TB patients felt that other TB patients may lose their jobs when their employers find out about their TB status, none of the TB patients had been fired from work because of TB.
		□ Husband/Wife/Boyfriend/Girlfriend (3/20) He/she rejected/left me.(1/20)
		□ [Other] Family Members (4/20) Some rejected/left me. (3/20)
	You lost friends when you told them about your situation [Q26] (2/20)	□ Friends (17/20) Some rejected/left me. (2/20)
		□ Co-workers/Schoolmates (3/20) Some rejected/left me. (1/20)
	People in your situation lost their jobs when their employers found out about it [Q25] (20/20)	□ Employer/Teacher/Warden* (3/20) I was fired from work/chased from school.(0/20)