“It is not an easy decision on HIV, especially in Zambia”: opting for silence, limited disclosure and implicit understanding to retain a wider identity

Abstract

As universal testing moves onto the HIV agenda, there is a need for more understanding of the relatively low uptake of HIV testing and the dynamics of disclosure in Sub-Saharan Africa. Despite the expanding provision of anti-retroviral therapy in Zambia since 2004, disclosure of HIV status – beyond a closed network – remains limited. Drawing on 20 years of living and working in a high HIV prevalence country, research on HIV-related stigma and existing literature on disclosure, this paper explores the reasons that lie behind limited disclosure. Unravelling why HIV disclosure remains “a navigation in a moral field”, the pattern of silence around HIV and the routine and often subtle presence of HIV in daily life reveals two key dynamics. The first dynamic is shifting public/private boundaries and retaining a wider identity. People living with HIV juggle the pragmatic advantages of disclosing to a limited circle with the importance of maintaining not only their moral integrity, status and (for some) professional and group identity but also of maintaining their privacy. A more public disclosure (“speaking it” more widely) shifts private–public boundaries and can be threatening, dangerous and can fix identity. Furthermore, disclosure carries obligations which, given high levels of poverty, can be hard to meet. The second dynamic is a pattern of implicit understanding. It can be easier in a context of high HIV prevalence to opt for silence, in its various forms, with the presence of HIV implicitly understood but not often explicitly spoken about. Although this gives more room for manoeuvre and for respect, silence too can be dangerous and certain situations dictate that it is better to breach the silence. More aggressive promotion of HIV testing needs to both respect and consider how to work within these existing dynamics to facilitate safe disclosure.

Keywords:

• TB
• HIV
• disclosure
• stigma
• Africa

Acknowledgements

I would like to acknowledge firstly various discussions with Sandra Wallman, Bawa Yamba, Karen Tranberg Hansen, Helen Ayles, Joseph Banda, Tony Simpson and Valerian Derlega about this topic. Many of them also commented directly on this manuscript. Thanks to Helen Ayles and Peter Godfrey-Faussett, the Zambian Principal Investigators of ZAMSTAR, for allowing me to including unpublished ZAMSTAR data, and to the anonymous reviewers. Additional insights came from participants at the UEA Conference, including Johanna Hanefeld, Tony Barnett, Alice Welbourne, Susie Forster, Janet Seeley and Margaret Daniel. I would also like to thank everyone who has contributed their experiences of HIV, including Ilse Mwanza, “E” (who I interviewed in January 2003) and many other colleagues and friends. The health worker study was carried out in 2007 with Gina Kruse, Scott Ikeda, Mavis Nkhoma, Nicole Quiterio, Stewart Reid, Debra Pankratz and Ben Chi from the Centre for Infectious Disease Research in Zambia (CIDRZ) and Bushimbwa Tambatamba Chapula and Kaluba Mataka from Lusaka District Health Management Team. Thanks to the funders of my time – namely the Bill and Melinda Gates Foundation (through the ZAMSTAR Study under the CREATE consortium) and DFID (through the TARGETS RPC).