Qualitative exploration of experiences and consequences of health-related stigma among indonesians with HIV, leprosy, schizophrenia and diabetes

Sarju Sing Rai, Irwanto*, Ruth M.H. Peters, Elena V. Syurina, Annisa Ika Putri, Altana Mikhakhanova, Denise Naniche, Marjolein B.M. Zweekhorst

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

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 (Human Immunodeficiency Virus), 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 enacted stigma in healthcare, employment, and social interactions in the structural and interpersonal levels. They also experience 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.

Original languageEnglish
Pages (from-to)7-16
Number of pages10
JournalKesmas
Volume15
Issue number1
DOIs
Publication statusPublished - Feb 2020

Funding

We would like to acknowledge the support from local NGOs and their staff members - Forum Komunikasi Difable Cirebon (FKDC), Yayasan Cahaya Jiwa, Persatuan Jiwa Sehat, Lentera Anak Pelangi, Komunitas Peduli Skizofrenia Indonesia (KPSI). We would also like to extend our gratitude to the project associate Ms. Sari Lenggogeni, research assistants - Caryn Yachinta and Shella Kostan, and resource persons - Catherine Thomas and Edwin Sutamto from Atma Jaya Catholic University, Jakarta, Indonesia. This work was supported by funding from the Erasmus Mundus Joint Doctorate (EMJD) Fellowship-Trans Global Health Consortium [2013-0039] received by the first author (SSR) and from Leprosy Research Initiative (LRI) project number 706.18.20.LRI received by the co-authors (I & RMHP). We would like to acknowledge the support from local NGOs and their staff members – Forum Komunikasi Difable Cirebon (FKDC), Yayasan Cahaya Jiwa, Persatuan Jiwa Sehat, Lentera Anak Pelangi, Komunitas Peduli Skizofrenia Indonesia (KPSI). We would also like to extend our gratitude to the project associate Ms. Sari Lenggogeni, research assistants—Caryn Yachinta and Shella Kostan, and resource persons— Catherine Thomas and Edwin Sutamto from Atma Jaya Catholic University, Jakarta, Indonesia. This work was supported by funding from the Erasmus Mundus Joint Doctorate (EMJD) Fellowship-Trans Global Health Consortium [2013-0039] received by the first author (SSR) and from Leprosy Research Initiative (LRI) project number 706.18.20.LRI received by the co-authors (I & RMHP).

FundersFunder number
Atma Jaya Catholic University2013-0039
Caryn Yachinta and Shella Kostan
Komunitas Peduli Skizofrenia Indonesia
Lentera Anak Pelangi
Leprosy Research Initiative706.18.20
Persatuan Jiwa Sehat
Yayasan Cahaya Jiwa

    Keywords

    • Diabetes
    • Human Immunodeficiency Virus
    • Leprosy
    • Schizophrenia
    • Stigma Indonesia

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