Overview & Background
IN THIS SECTION:
Defining Disclosure The term disclosure is used to describe the action of making new or secret information known. Within the context of HIV/AIDS, disclosure is a multi-faceted and multi-layered process; which is influenced by intersections of identity, dimensions of difference, and context. Although the experience of disclosure is unique to each individual, most will undergo similar stages of disclosure each time the disclosure process is initiated. This model provides a template that outlines the stages involved.
Impact of Disclosure on Health & Well-being
Impact of Disclosure on Health & Well-being Disclosure of HIV positive status is an important strategy for reducing HIV transmission, however when this is the only focus HIV disclosure can be a traumatizing, isolating, and painful experience. In order to adequately and meaningfully people living with HIV to disclose their status other factors must be taken into consideration. Disclosure can be an empowering experience for people living with HIV if there is adequate support and counseling throughout the process. This tool is meant to promote the understanding of challenges people living with HIV face in terms of disclosure and how service providers and organizations can strive to alleviate some of the associated stress.
Development of the Model
The model was developed through a process of knowledge exchange with community stakeholders through three distinct research phases:
The process began with a literature review, a series of focus groups, and key informant interviews to develop the model. Participants, service providers, and peers implemented and participated in the development of the model as well as the pilot testing phase.
Development and Pilot Testing:
Development of Integration Guidelines:
The process began with a literature review and consultation with our partner organizations on how best to integrate the disclosure model in everyday practice.
Focus groups with youth, heterosexual black men, Gay/MSM in Toronto, and interviews in Waterloo and Niagara were conducted with to determine the adaptability of the model.
Expansion and Roll-Out:
About the Team
Women’s Health in Women’s Hands (WHIWH) Community Health Centre’s mandate is to provide primary healthcare to racialized women from the African, Black, Caribbean, Latin American and South Asian communities in Toronto and surrounding municipalities. We are committed to working from an inclusive feminist, pro-choice, anti-racist, anti- oppression, and multilingual participatory framework in addressing the issue of access to healthcare for our mandated priority populations encompassing gender, gender identity, race, class, violence, sexual orientation, religion, culture, language, disability, immigration status and socio-economic circumstances.
Wangari Tharao, Research Director at Women’s Health in Women’s Hands is the lead on this project. She is also a nationally recognized community based researcher working with multiple stakeholders to generate knowledge and translate it into action to inform programs and policies targeted at racialized women. Wangari has served on various boards, working groups, advisory and review committees including the Ontario HIV Treatment Network’s Scientific Review and Community Network Advisory Committees, the Ontario Advisory Committee on HIV/AIDS (OACHA) and Ministerial Council of the Canadian Strategy on HIV/AIDS. As an HIV advocate, She has led the development of local, national and international initiatives to support ACB populations living in Canada and other developed countries mount effective responses to HIV/AIDS. She served as the Co- Chair of the African and Caribbean Council on HIV/AIDS in Ontario (ACCHO) from 2004 – 2010 and is currently the Co-Chair of the Governing Council of the African and Black Diaspora Global Network on HIV and AIDS (ABDGN), a network she co-founded during the International AIDS conference held in Toronto in 2006. The aim of the network is to support a coordinated global response to HIV within African/Black populations living in the diaspora.
This research project would not have been possible without the support and input of our research team and advisory committee. We have been fortunate to work with several different organizations in Ontario, all of which have been instrumental in the development and expansion of this research.
1. Toronto People with AIDS Foundation (PWA)
2. The Black Coalition for AIDS Prevention (Black CAP)
3. Africans in Partnership Against AIDS (APAA)
6. African and Caribbean Council on HIV/AIDS in Ontario (ACCHO)
9. AIDS Committee of Toronto (ACT)
10. AIDS Committee of Cambridge, Kitchener,& Waterloo (ACCKWA)
11. Community for Accessible AIDS Treatment
12. Regional HIV/AIDS Connection
14. Public Health Agency of Canada
How to use the Toolkit
Each section begins with a brief explanation and provides insight into the intervention as well as documents to help guide you through implementing the framework at your organization. To begin, read the toolkit in its entirety and determine if you have the necessary tools, resources and organizational support to implement the intervention framework into your everyday practice. Follow the guidelines in ‘Integration Guidelines for Organizations’ as they pertain to your organization. Utilize the resources available in ‘Resources for Disclosure’ to add depth and context to your implementation and integration plan.
Frequently Asked Questions
The toolkit is a step-by-step guide for delivering the intervention directly to clients. There are resources to help support clients and providers with the process. These resources can be found in ‘Integration Guidelines for Organizations’ and ‘Resources for Disclosure’
What is the toolkit?
Who is the toolkit for?
The toolkit is designed for organizations, service providers and peers who would like to provide support to people living with HIV who are contemplating disclosure. It is also for anyone who is interested in learning more about the disclosure model and may be interested in implementing the model in their setting.
This toolkit can provide additional resources and guidance on how to integrate the HIV Disclosure model as a support service in an organization’s day to day practice.
Why should I use it?
What about involuntary disclosure?
At this moment in the time HIV Positive Sero-Status Disclosure Intervention only provides a support framework for voluntary disclosure. The Research Team is in the process of seeing what mechanisms can be put in place to address involuntary disclosure through the HIV Positive Sero-Status Disclosure Intervention.
I already provide HIV disclosure support, how is this model different?
This is a tool that is meant to provide a systematic template of how to support individuals through the process of disclosure. How to navigate disclosure support can be challenging, so the hopes of this model is to provide some guidance in your everyday practice.
What is a case study? How can I use it?
A case study is particular instance of an event or situation, which is often written in story format to serve as an example to others in similar situations. Case studies help illustrate ways in which care providers can deal with similar issues in the future. You can use the case study to test your skills as a care provider in identifying issues around disclosure.