Stigma as experienced by women accessing prevention of parent-to-child transmission of HIV services in Karnataka, India

Abstract

In Karnataka, India only one-third of HIV-infected pregnant women received antiretroviral prophylaxis at delivery in 2007 through the state government's prevention of parent-to-child HIV transmission (PPTCT) program. The current qualitative study explored the role of HIV-associated stigma as a barrier to access PPTCT services in the rural northern Karnataka district of Bagalkot using in-depth interviews and focus group discussions with HIV-infected women who had participated in the PPTCT program, male and female family members, and HIV service providers. Participants discussed personal experiences, community perceptions of HIV, and decision-making related to accessing PPTCT services. They described stigma toward HIV-infected individuals from multiple sources: healthcare workers; community members; family; and self. Stigma-related behaviors were based on fears of HIV transmission through personal contact and moral judgment. Experience and/or fears of discrimination led pregnant women to avoid using PPTCT interventions. Government, cultural, and historical factors are described as the roots of much the stigma-related behavior in this setting. Based on these formative data, PPTCT program planners should consider further research and interventions aimed at diminishing institutional and interpersonal HIV-associated stigma experienced by pregnant women.

Keywords:

• HIV
• PMTCT
• pregnancy
• stigma

Acknowledgements

The authors would like to express deep appreciation for the HIV-infected women and their family members who participated in this study. The authors would like to thank Dr Christine Varga for allowing our adaptation of interview tools. We would like to acknowledge the work of Ms. Laxmi B.Hulsageri, Ms. Rekha Srivatsa, Ms. B.R. Gnaneshwari, Mr. Ramchandra and Mr. G. Suresh for interviews and translation and transcription of data. We would like to thank Dr B.N. Naik and Ms. Savithri of the PPTCT center in Bagalkot, Mr. Nagaraj of Karnataka Health Promotion and Trust in Bagalkot and the Jeevan Jyothi Positive Peoples' Network in Mudhol for assistance in design of the interview tool and recruitment of study participants. This study was funded by the Fogarty AIDS International Training and Research Program grant at University of California, Berkeley (D43 TW00003-22). Lisa Rahangdale's work on analysis and manuscript preparation was supported by the U.S. NIH Women Reproductive Health Research award (5 K12 HD01249). Janet M. Turan's work on this article was supported, in part, by the U.S. National Institute of Mental Health (K01MH081777).

Notes

1. Based on early Hindu epics, a hierarchical social structure designated the lowest caste as “untouchable” or “dalit.” Caste was based on birth and holding occupations that were considered unclean (e.g., road sweepers, toilet cleaners). Physical contact with these individuals by higher caste members of society was forbidden. Due to religious and political reforms, attention to this unethical practice led to protections and anti-discrimination legislation in the twentieth century.