Qualitative exploration of the experiences of individual living with health-related stigma and its consequences among Indonesians with HIV, leprosy, schizophrenia, and diabetes

Health-related stigma causes a negative impact on the lives of affected people and undermines the effectiveness of public health programs. This study aimed to explore experiences and consequences of stigma among people affected by four health conditions relevant in Indonesia– HIV, leprosy, schizophrenia and diabetes. In this qualitative study 40 people affected by the four health conditions in Jakarta and West Java, Indonesia–, were interviewed between March and June 2018. Data were analyzed thematically by following an integrative inductive-deductive approach. The experiences and consequences of people with stigma were similar, but such experience were more severe among people affected by HIV, leprosy, and schizophrenia. Those with diabetes either experienced no or less severe stigma. The participants revealed that they experienced the enacted stigma in healthcare, employment, and social interactions in the structural and interpersonal levels. They also felt the stigma in the form of internalized and anticipated stigma at an individual level. Incidences of human rights violations were evident. Social, behavioral, psychological, and medical consequences were also reported.