ADAPTING A STIGMA SCALE FOR ASSESSMENT OF TUBERCULOSIS-RELATED STIGMA AMONG ENGLISH/SWAHILI-SPEAKING PATIENTS IN AN AFRICAN SETTING.

Abstract

To adapt a validated instrument that quantitatively measures stigma among English/Swahili speaking TB (tuberculosis) patients in Kenya, a high burden TB country. Following ethical approval, we elicited feedback on the English and Swahili translated Stigma Scale for Chronic Illness (SSCI) tools through cognitive interviews. We assessed difficulties in translation, differences in meaning, TB contextual relevance, patients' acceptability to the questions, and issues in tool structure. The interviews were audio recorded, transcribed and translated. Open coding and thematic analysis of the data was conducted by two independent researchers. Between May and September 2015 we conducted a qualitative study among 20 adult TB patients attending 11 health facilities in Nairobi County, Kenya. Most questions were understood in both English and Swahili, deemed relevant in the context of TB and acceptable to TB patients. Key areas of adaptation of the SSCI included adding questions addressing fear of infecting others and death, HIV stigma, and intimate, family and workplace relationship contexts. Questions were revised for non-redundancy, specificity and optimized sequence. The adapted 8-item SSCI appears to be a useful tool that may be administered by health workers in English or Swahili to quantify TB stigma among TB patients in Kenya.