To disclose or not to disclose? The factors influencing HIV disclosure among African and Caribbean women
M. Muchenje1, W. Tharao1, M. Mehes2, R. Njeri3, M. Ndungu4, P. Hove5, R. Pisharody6, J. Kindy-McPherson7, S. Anjema8
1Women's Health in Women's Hands, Community Health Centre, Toronto, Canada, 2York University, Toronto, Canada, 3Black Coalition for AIDS Prevention, Toronto, Canada, 4Africans in Partnership against AIDS, Toronto, Canada, 5Voices of Positive Women, Toronto, Canada, 6Toronto People with AIDS Foundation, Toronto, Canada, 7The Teresa Group, Toronto, Canada, 8Casey House Hospice, Toronto, Canada
Background: The disproportionate incidence of HIV infection among women from the African and Caribbean Diaspora creates complex social, cultural, and economic challenges. Disclosure of an HIV-positive status represents an important step in addressing these obstacles, accessing support services and avoiding legal prosecution. While, public health interventions can provide women with support and guidance, a culturally appropriate and gender-specific understanding of the factors influencing disclosure is critical to effective implementation. We present the findings of a community-based study that examined the factors influencing HIV disclosure among African and Caribbean women in Toronto, Canada.
1) The literature was reviewed to identify relevant HIV disclosure studies and models.
2) Focus groups were conducted with HIV-positive African and Caribbean women, who self-identified as being at various stages of the disclosure process. Service providers were also consulted through focus group sessions.
3) Key-informant interviews were conducted with four women from different African countries.
4) Interviews and focus groups were recorded, transcribed and analyzed using relevant theoretical frameworks.
Results: Findings suggest that a number of factors influence how HIV-positive women negotiate the disclosure process, including: education; empowerment and self-acceptance; internal and external sources of stigma; support systems; treatment and disease progression; violence and safety; legal and ethical issues; culture and community; as well as spirituality.
Conclusions: African and Caribbean women face a number of unique challenges when contemplating disclosure to their partners, children, family members,and service providers. The purpose of this investigation was to provide insights into the development of a culturally appropriate and adaptable HIV disclosure intervention. However, these findings are also useful to practitioners and support workers seeking to develop effective public health responses that support women contemplating disclosure, while addressing secondary transmission and criminalization issues.
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