Stigma towards leprosy across seven life domains in Indonesia: a qualitative systematic review

OBJECTIVE: To provide knowledge about the domains of life affected by stigma towards leprosy in Indonesia, including its manifestations, driving factors and consequences. DESIGN: Qualitative systematic review. STUDY SELECTION: PubMed, CINAHL, ProQuest, Taylor&Francis and Google Scholar were used to systematically search studies with qualitative component that were conducted in Indonesia and published from January 2000 to December 2020 in English or Indonesian language. The search was started in November 2020 and reran in April 2021. Quality assessment and thematic synthesis were applied. DATA EXTRACTION: Of the 3184 studies, 37 manuscripts were reviewed. Information relating to study characteristics, stigma domains and types following Weiss Extended Scambler’s Hidden Stress Model, stigma consequences and drivers were extracted. RESULTS: Seven themes were identified. Three themes—community, domestic and intimate relationships—impacted private domains. Four themes—health, economics, education and public entitlements—concerned public domains. Studies mainly discussed enacted stigma rather than anticipated and internalised stigma. Ten stigma-driving factors were found, ranging from negative and positive concepts linked with the condition to aspects not related to the disease process. Five areas of consequences were shown. Impact on public rights, such as education, was very minimally explored, although school absence was often mentioned. Stigma manifestation, drivers and consequences in most public domains were least explored. CONCLUSION: Leprosy-affected persons in Indonesia experienced and felt stigma in private and public domains. Disease-related aspects, the culture and history of a particular region are linked with stigma manifestations. Approaches in one domain can affect another domain. More exploratory studies are needed in the endemic areas outside Java, especially considering both the lack of studies there and the unique culture of each Indonesian region.