Women and HIV Disclosure

Presenter:Wangari Tharao

Women’s Health in Women’s Hands CHC

Central East Opening Doors Conference, Fern Resort, Orillia

October 2, 2015

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Presentation Outline:

• Introduction• Objectives of disclosure model/guidelines being presented

• Factors influencing disclosure

• Disclosure journey: Steps

• Women’s experiences with disclosure

– Pilot testing experience

– Digital Story Telling Videos

• Conclusion

• Next steps

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Introduction (1)

• When disclosure is managed properly, it has major benefits for BOTH those living with and at risk of contracting HIV– Its an effective HIV prevention and support strategy

• Currently, criminalization of HIV non-disclosure has taken centre stage:– HIV prevention strategy with a focus and benefits only for

those that are HIV-negative

• There is a need to refocus on disclosure and use it as a tool:– To improve health and wellbeing– Prevent secondary HIV transmission (poz prevention).

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Introduction (2)

• 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

• The aim of our project was to develop a model or guidelines and toolkit to provide a systematic way of supporting women (people) living with HIV through the process of disclosure within organizational settings

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Introduction (3):

• Original project partners:– WHIWH– APAA– Black CAP– Teresa Group– Casey House– Toronto PWA– VOICES of Positive Women

• Expansion:– The AIDS Network,– Positive Living Niagara– AIDS Committee of Cambridge, Kitchener, Waterloo and Area (ACCKWA)– Interagency Coalition on AIDS and Development– AIDS Committee of Ottawa– AIDS Committee of Toronto

• Obtained funds from PHAC since 2008/09

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Objectives of the Disclosure Model/guidelines:

• To provide a step by step framework to guide women and other people living with HIV and their service providers to go through the process of disclosure

• Provide resources and support mechanisms to guide women (and other PHAs)

• 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

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Process used to Develop the Model/Guidelines (1)

• Extensive literature review– OHTN – rapid response literate review– Expanded search with the support of graduate student

• Focus groups with African, Caribbean and Black (ACB) women living with HIV (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 out of 8 trained peers supported pilot test

• Provincial think tank to share findings and obtain feedback– Criticism about lack of integration guidelines

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Process used to Develop the Model/Guidelines (2):

• Development of integration guidelines: 2012 – 2014– Lit review and focus groups to develop

integration guidelines

• Expansion of project: 2014 - 2017:– Geographic expansion – Inclusion of other target populations e.g. gay

men/MSM, heterosexual men, etc -2014-2017

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Factors influencing disclosure (1):

• Intersections of race, gender, culture and other dimensions of difference created unique experiences of living with HIV– Ones social networks

– 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

– Need to access treatment and links to confidentiality

– Criminalization of HIV non-disclosure

– Lack of disclosure skills

– Ramification against family members

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Factors Influencing Disclosure (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

• If practicing safer sex no need to disclose

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Framework of the model/guidelines:

• Use of Anti Racism/Anti Oppression framework, social justice, human/women’s rights and GIPA/MIPA

• 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 transnational nature of individual lives lived in multiple locations locally and internationally

• Integration of determinants of health of importance to communities of people living with HIV, particularly women

• Grounding in community based, participatory action and leadership – utilization of peers to support their counterparts

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The Disclosure Journey: Steps

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DISCLOSURE

Is disclosure necessary?

Dis

clos

ure

Pro

cess

5.

Accessing Potential Outcomes

3.Establishing

Motivation for

Disclosure

4.

Evaluating the Disclosure Environment

2.Education

and

Preparatio

n

1. Acceptance and Empowerment

HIV Diagnosis

Disclosure

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Start of the Journey:

• 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

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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

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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

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Step 3: Instrumental, Individual and Social

Motivations for Disclosure:

– Identify reason(s) why the person 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?

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Step 4: Evaluating the Disclosure

Environment:

– Evaluation of the physical environment where disclosure will take place

• Is the disclosure environment favorable?

– Determine social supports available to the person

– Determine safety and wellbeing of the person• Will disclosure threaten the safety or welfare of the

person and their 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.

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Step 5: Assessment of the potential outcomes

of disclosure (1):

• 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 person’s future?

• How will it affect health and wellbeing?

• How might it impact on the person’s family?

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Step 5: Assessment of the potential outcomes

of disclosure (2):

• 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?

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Disclosure Event:

• If ready implement action plans ensuring all support systems are in place

• If not ready continue preparations, support and revisit previous steps

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Experiences during Pilot Testing of Model/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

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“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

Participants’ Experiences During Pilot Testing of Model/Guidelines (2):

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Stories of Women’s Experiences with Disclosure:

View 3-5 DST Videos developed by women to illustrate their journeys with disclosure

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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

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Conclusion

• Presented guidelines are culturally-based and can be tailored to needs of individuals living with HIV

• Can be broadly applicable across populations

• Cost effective since it can be integrated within support services in ASOs and other institutions

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Next Steps

– Commencement of capacity building process for organizational integration (i.e., integration guidelines, training sessions)

– Pilot testing of interventions with other targeted populations (i.e., gay men/MSM, heterosexual men)

– Rollout of intervention across the province

– finalization of the toolkit to support organizational integration, implementation and sustainability of disclosure support programs

• Intervention, integration guidelines, disclosure DST videos, local resources, etc.

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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 and reporting mechanism

• PHAC for funding all the phases of the intervention – development, pilot testing and rollout

• AIDS Bureau for supporting think tank meeting with HIV positive women

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Acknowledgement

Women’s Health in Women’s Hands Staff

Thank You!