HIV status disclosure among HIV-positive African and Afro-Caribbean people in the Netherlands

Abstract

HIV status disclosure is often characterized as a dilemma. On the one hand, disclosure can promote health, social support, and psychological well-being. On the other, disclosure can lead to stigmatization, rejection, and other negative social interactions. Previous research has shown that HIV status disclosure is a reasoned process whereby the costs and benefits to oneself and to others are weighed. As such, understanding disclosure requires understanding the reasons for and against disclosure employed by people living with HIV (PLWH). In this study, disclosure among a population disproportionately affected by HIV in the Netherlands, namely African and Afro-Caribbean diaspora, was investigated. Reasons for nondisclosure were fear of stigmatization, previous negative experiences with disclosure, having observed the stigmatization of other PLWH, shame, the desire to protect others – particularly one's children and family – from stigmatization by association and/or worrying, and the belief that one's HIV status is a private matter. Participants reported disclosing because they were in a close and supportive relationship, disclosure led to emotional release, disclosure could lead to emotional or financial support, they felt a perceived duty to inform, and they had a desire to educate others about sexual risk-taking. The findings suggest that stigma plays an important role in disclosure decisions among these populations. They further point to a need for HIV-related stigma reduction interventions in African and Afro-Caribbean communities and culturally sensitive counseling for PLWH whereby caregivers do not automatically assume that disclosure is best but rather provide a safe environment in which the costs and benefits of disclosure can be weighed and strategies for disclosure can be developed, if perceived as beneficial by PLWH.

Keywords:

• HIV/AIDS
• disclosure
• stigma
• ethnic minorities
• culture

Acknowledgements

The authors thank the interview participants for sharing their stories and the Dutch AIDS Fonds and Abbott for their financial contribution (grant numbers 2006092 and 7004). They also thank the interviewers (Chantal Rumanzi, Emmy Markelo, Erik Beune, Juan Walter, Mikel Haman, Mirte Wibaut, Rubelto Baker, and Urmy Macnack), the PLUS project and HIV Stigma and Taboo project committees (Nicole van Kesteren at TNO; Ronald Brands and Maartje Liebregts at the Dutch HIV Association; Mariette Hamers, Evert van Veen, and Onno de Zwart at the Community Health Services in Rotterdam; Stephan Cremer and Juan Walter at the Community Health Services in Amsterdam; and Fetzen de Groot at the Community Health Services in Groningen), and the students who transcribed the interviews (Anne van Middelaar, Carolien van Wagenberg, Danielle Pool, Joyce van Leendert, Roy van Veldhuizen, Sanne van Lieshout, and Simone Heijnen). Thank you also to the Dutch HIV Association, Humanitas and the Professional Organization of HIV Consultants for their efforts in recruiting participants, and to two anonymous reviewers whose comments improved the quality of this paper.

Additional information

Notes on contributors

Herman P. Schaalma

Professor Herman P. Schaalma passed away unexpectedly on 25 July 2009