Guidelines for Disclosure of HIV positive status for African, Caribbean and Black Women

Guidelines for Disclosure of HIV positive status for African, Caribbean and Black Women Wangari Tharao Program and Research Manager, Women’s Health in Women’s Hands CHC HIV Testing Conference/KTE Event 2013 June 14th, 2013

Location __________ 2 Carlton Street, Suite 500 Toronto, Ontario M5B 1J3 Tel: 416-593-7655 Fax: 416-593-5867 Website: www.whiwh.com

Outline of Presentation: • Introduction • Objectives of the guidelines • Issues relevant to ACB women to take into consideration when using guidelines: • The framework and structure of the guidelines • What participants said about the guidelines • Conclusions:

Introduction: • In 2009, ACB people represented 19% of all people living with HIV in Ontario • 60% were men; 40% were women • Rate of transmission was 24 times higher compared to other groups infected heterosexually • From 2009 to 2011, ACB women made up 56.1% of new HIV diagnoses among women • ACB women also made up 45% of the 5,000 women living with HIV in Ontario in 2009 • 65% of ACB women living with HIV are diagnosed • 35% still need to be diagnosed

Introduction (2): • ACB women experience major challenges disclosing HIV status • Racialization of criminalization of HIV non-disclosure is also a major issues in ACB communities: • Approximately ½ of all men charged in Ontario since 2004 have been Black heterosexual men • Criminalization of Black women is now emerging as an issue • Managed properly, disclosure has major benefits for BOTH those living with and at risk of contracting HIV

Introduction (3): • Based on existing literature, effective disclosure has been linked to: • Reductions in HIV transmission • Increased adherence to HIV treatment • Access to support services • Improved mental wellbeing • Effective adaptation to living with HIV • We needed to provide a systematic way of supporting ACB women through the process of disclosure

Introduction (4): • Project partners: • WHIWH • APAA • Black CAP • Teresa Group • Casey House • Toronto PWA • VOICES of Positive Women • Obtained funds from ACAP, PHAC Ontario region in 2008/09

Objectives of the guidelines: • To provide a step by step framework to guide ACB women and their service providers through process of disclosure • Provide resources and support mechanisms to guide women • Foster discussions on issues impacting disclosure • Identify challenges and opportunities/options • Evaluate potentials risks and outcomes • Identify points where a woman can withdraw from the disclosure process

Process: • Extensive literature review • OHTN – rapid response literate review • Expanded search with the support of graduate student • Focus groups with ACB WLWH and service providers (n=30) • In-depth interviews ACB WLWH (n=4) • Developed guidelines and pilot tested: • Recruited 28 women and 22 went through the process • 5 out of 6 providers participated in the pilot test • 5 our of 8 trained peers supported pilot test • Provincial think tank to share findings and obtain feedback

Issues relevant to ACB women to take into consideration when using guidelines: • Intersections of race, gender, culture and other dimensions of difference created unique experiences of living with HIV • Ability to deal with multiple facets of stigma and discrimination based on race, gender, sexual orientation, age, etc • Burden of secrecy and isolation • Managing visible symptoms of the disease in secret particularly within family • Fear of accessing treatment and links to confidentiality • Criminalization of HIV non-disclosure

Issues relevant to ACB women to take into consideration when using guidelines(2): • Gender based violence • Threat or possibility of violence • Immigration status • Break of any sponsorship plans, separations • Financial support and security • In workplace – medical coverage, work security, etc. • Home – food and housing security • Culture, community and faith groups: • Varying knowledge of HIV: • lack of understanding of HIV in many cases – literacy and language issues • myths and stereotypes about the disease • Conflicting ways of dealing with HIV - Canada/country of origin

Framework of the guidelines: • Use of AR/AO framework, social justice and human and women’s rights • Recognition of multiple lives lived and experienced at multiple sites: • e.g. within family, community and health and social structures • Intersecting nature of the oppressions experienced at these sites • Recognizes the trans-national nature of individual lives lived in multiple locations locally and internationally • Integration of determinants of health of importance to ACB communities, particularly women • Grounding in community based, participatory action and leadership – utilization of ACB peers

HIV Diagnosis Disclosure Process Disclosure Is disclosure necessary? 1. Acceptance and Empowerment 5. Accessing Potential Outcomes 2. Education and Preparation DISCLOSURE 3. Establishing Motivation for Disclosure • 4. • Evaluating the Disclosure Environment

HIV diagnosis: Trauma of the diagnosis: Great distress, shock, disorientation, disbelief, denial, devastation, etc Complex experiences of loss: Feelings of being victimized, regret, sadness, loss of future dreams, hopelessness, fear, withdrawal, isolation, depression, suicidal thoughts, anger, etc Anxiety and grieving Combination with other traumas Need for support to cope, adjust and accept the diagnosis Start of the Journey

Step 1: Acceptance and Empowerment • Coming to terms with an HIV-positive diagnosis • Adjusting to being a person living with HIV • Encompasses a continuous process of personal growth, self-assessment, recognition and struggle to accept the new self identity: • A PHA

Step 2: Education and Preparation to Disclose • Knowledge of HIV 101 • Comfort level discussing HIV/AIDS • Availability, awareness and accessibility of services • Understanding the potential repercussions of disclosure and non disclosure

Step 3: Instrumental, individual and social motivations for disclosure • Identify reason(s) why the woman wants to disclose and to whom. • Is disclosure driven by a need to access resources services or additional social support? • Is it due to a sense of personal responsibility? • Is it driven by legal obligations? • Is it necessary? • Is it voluntary?

Step 4: Evaluating the disclosure environment • Evaluation of the physical environment where disclosure will take place • Is the disclosure environment favorable? • Determine social support available to the woman • Determine safety and wellbeing of the woman • Will disclosure threaten the safety or welfare of a woman and her family members? • Is there possibility of violence, stigmatization, rejection, or family problems? • Develop a safety plan if necessary • Determining if culture, community, faith and social supports will impact the disclosure environment.

Step 5: Assessment of the potential outcomes of disclosure. • What are the potential reactions to disclosure? • Is safety and wellbeing accounted for? • Is a safety plan ready? • Do the benefits outweigh the risks associated with disclosure? • How will disclosure affect a woman’s future? • How will it affect health and wellbeing? • How might it impact on her family?

Step 5: Assessment of the potential outcomes of disclosure. • Where will the event take place? • Who will be present? • Who will support the person being disclosed to immediately and long-term? • What mechanisms will be followed in case of negative impacts?

Disclosure Event: • If ready implement action plans ensuring all support systems are in place • If not ready continue preparations, support and revisit previous steps

Participants’ experiences during pilot testing of guidelines: “All issues have been encompassed and listed. It is like you knew what I was feeling and what I was going through.” -African Woman “Thanks to all the organizers and all those who have helped me walk this journey. It was life changing and once again thank you for helping me go into the unknown.” -Caribbean Woman

Participants’ experiences during pilot testing of guidelines (2): “Very effective, because from where we started when I did not want to talk about it and where I am right now. I am so blessed to have joined this program…because the peer went through the same situation, she did her best to educate or to help me around”. -Caribbean Woman “All aspects of the model were very useful as they provided a guide during our interactions, we were able to progress systematically from one level to the next” -Peer Support Worker

Conclusion Disclosure should: • Be voluntary with appropriate support mechanisms; • Respect the autonomy and dignity of the affected individuals; • Ensure confidentiality and privacy as appropriate; • Lead to beneficial results for the individual, his/her sexual partner(s), and family • Lead to greater openness in the community about HIV/AIDS; • Meet moral and ethical requirements to maximize good for both those living with and at risk of acquiring HIV

Conclusion (2): • Presented guidelines are culturally-based tailored to the needs of faced by ACB women • Can be broadly applicable across populations • Cost effective since they can be integrated within support services in ASOs • Next in process – our team is working out the organizational integration processes

Acknowledgements: • Women Living with HIV who participated in the project • Peers involved in the project • Project steering committee in phase 1 • Research team and advisory committee in phase 2 • Pilot testing site organizations • Intervention reviewers • OHTN for supporting the literature review • PHAC for funding the development of the intervention • AIDS Bureau for supporting think tank meeting with HIV positive women

Guidelines for Disclosure of HIV positive status for African, Caribbean and Black Women