Secrets and Silence: Agency of Young Women Managing HIV Disclosure

ABSTRACT

Drawing on a 12-month ethnography with young women living with HIV in Zambia, we explore their everyday strategies to avoid unintentional disclosure of their HIV status. Young women practiced secrecy with sexual partners, through hiding their antiretroviral therapy and using veiled language around HIV. Whilst remaining silent about their HIV status enabled them to maintain identities beyond HIV, this secrecy triggered feelings of guilt and anxiety, suggesting that their agency was “bounded” by the context of persistent stigma. These strategies to hide their HIV status question public health narratives urging disclosure, and support disclosure-counseling approaches that champions choice.

KEYWORDS:

• Zambia
• adolescents
• disclosure
• ethnography
• HIV
• young adults

Acknowledgments

Our biggest thanks go to the young women who participated in the study, contributing their time, energy and stories to the research.

Additional information

Funding

This work was funded by the Economic and Social Research Council.

Notes on contributors

Constance R. S Mackworth-Young

Constance R. S Mackworth-Young is a Research Fellow at London School of Hygiene and Tropical Medicine. She conducts social science research with a focus on young people and sexual and reproductive health. She is currently working in Zimbabwe, in collaboration with the Biomedical Research and Training Institute. Her PhD research, on which this manuscript is based, was an ethnographic study of the everyday lives of young women living with HIV in Zambia, conducted in collaboration with Zambart, within the University of Zambia.

Virginia Bond

Virginia Bond is an Associate Professor and a social anthropologist at the London School of Hygiene and Tropical Medicine, based overseas at Zambart within the University of Zambia. She conducts social science enquiry both within inter-disciplinary population randomized control trials in Zambia and South Africa and more independently. Her particular areas of interest are health related stigma (including HIV, TB and disability), HIV and TB ethnography (including young people and children’s experience of HIV and TB) and how community systems interact with epidemics.

Alison Wringe

Alison Wringe is an Associate Professor in Global Health at the London School of Hygiene and Tropical Medicine undertaking qualitative health research on the social aspects of HIV in African settings. Her recent research focuses on understanding patients’ responses to biomedical approaches to delivering HIV services and explores the intersections between the social concerns of people living with HIV and their pathways to HIV care and treatment in different African settings.