The HIV Positive Sero-Status Support Disclosure Model 

IN THIS SECTION:

 

Guiding Principles & Framework

The intervention known as “The HIV Positive Sero-Status Disclosure Support Model” is a 6-step process designed to guide users through the initial steps of determining the need for disclosure and the subsequent steps required for a successful disclosure to occur based on the research conducted by our team. The frameworks and guiding principles that guided the development of the model are outlined below: 

A feminist and critical race theoretical framework emphasizes justice, fairness, rights and links research to action. It helps shed light on the organizational and structural nature of intersecting oppressions (gender, racism, homophobia) and the interdependent, mutually constitutive relationship between social identities and inequities. It connects research to resistance with emancipatory aims to challenge oppression and promote social justice. 

A transnational theoretical framework best describes the multiple and hybrid identities of migrant populations living in Canada. It recognizes that the social life of migrants is not confined to one country, that migrants take part in the social life of both societies rendering the nation state boundaries invisible. 

The disclosure intervention presented here is an example of an individual level intervention where the client receives support directly from a care provider or peer. The key objective of a person-centered approach is one that respects the autonomy and dignity of an HIV-positive individual throughout the disclosure process. A person-centered approach allows an individual’s reality and sentiments to inform and determine how the disclosure action plan will develop and be implemented in order to maximize their wellbeing and safety. 

Much like the process of developing this intervention, the disclosure intervention itself is an iterative process. Clients are able to move forward and backward (as indicated by the arrows) through the model depending on their comfort level at each stage or the context in which disclosure is occurring and/or unfolding. This enables growth and greater learning which allows for better potential outcomes as issues are addressed, fixed, and/or readdressed as the need arises.

GIPA/MIPA values allow for the greater involvement and meaningful engagement of people living with HIV/AIDS, an approach that is grounded in human rights and recognizes the importance of inclusion.

Any action undertaken to promote disclosure must first recognize the deep and complicated impact of HIV diagnosis on the lives of clients and their loved ones. Additionally, achieving disclosure should not be assumed to be the best outcome for all clients. Some clients may have other priorities that can provide greater benefit to their lives depending on where they are in their HIV journey. Thus, we begin with a simple question:

 

Is Disclosure Necessary? 

Finding the answer to this question may require significant work on the part of service providers in some cases. There are several ways to begin, including but not limited to: 

  • Initiating discussion with clients about disclosure during community events & programs 

  • Post-diagnosis counseling 

  • One on one interviews 

  • Conferring with the client’s health care team (doctors, social workers, nurses, etc.) 

  • Intake 

If the need for disclosure is established, clients should be guided through the steps of the model by trained peers and/or health care personnel. Depending on the needs of the individual, the process may take a few weeks, months or extend over longer periods of time. It is up to the care provider or peer to recognize barriers and resistance to disclosure and adjust the pace of the model accordingly. As such, it is recommended that the model be delivered by personnel with experience in counseling and that the process begin with obtaining informed consent and establishing confidentiality. 

Structure & Elements

 

Determining readiness for disclosure or any other action-based model is a subjective process, which relies on individual insight. As such, experienced care providers may be able to reach a conclusion as to a client’s ability and willingness to disclose through dialogue and direct observation. Care providers and peers should look for key indicators when assessing acceptance & empowerment. 

Key Indicators: 

  • Has the client accepted the diagnosis of HIV? 

            Are they experiencing negative emotions or denial?

            Can the client articulate their experience of living with HIV?

            Do they self-identify as living with HIV? Additionally, look to programs within your organization or in partner organizations that can                  help improve self-awareness and empowerment: 

  • Self-help and support groups 

  • Direct peer support 

  • Digital Stories and web-based resources 

Alternatively, move forward to the next step if the client understands their diagnosis and is in an accepting frame of mind. However, it may be necessary to refer the client for further counseling with a member of your care team or work with the individual for a longer period of time. 

Knowledge of basic HIV transmission and treatment is essential for positive prevention of HIV to prevent transmission to partners and infants. If the client’s understanding is limited in this respect, the model should be paused at this stage until the client is sufficiently able to understand their diagnosis and what it may mean if they disclose their status. 

Key Indicators: 

  • How much does the client know about HIV transmission, treatment, and prognosis? 

  • Is the client comfortable discussing HIV? 

  • Is the client aware of services available to them in their community? 

  • Is the client aware of the repercussions of HIV disclosure? 

  • Is the client aware of what may happen if they do not disclose their status? 

If the client has a solid level of awareness of the resources available to them (legal aid, infant feeding programs, wellness and mental health programs, income support, etc.) and can identify both positive and negative potential outcomes of disclosure, then, the client is ready for the next step. 

Although the client has been guided through the informed consent & confidentiality process it is important to reestablish the voluntary nature of disclosure at this stage. Based on your judgment if disclosure is necessary and voluntary the client can move on to the next step. However, if there is any amount of hesitation, please take the time to return to the previous steps and probe deeper into the preparation process. This may include gathering resources and guiding the client through the education process. 

Key Indicators: 

  • The client can clearly state one or more reasons for disclosure (legal concerns, disclosing to their perinatally infected child or teenager, access to resources that require disclosure e.g. disability support, etc.) 

  • The client feels that disclosure is necessary in order to achieve a desired goal (e.g. personal relationship, legal protection, immigration status, special designation or accommodation, etc.)

  • The client often initiates discussions around disclosure and asks questions 

During this stage it might be helpful to map out your client’s support environment including family and friends. If the client can identify one or more individuals that can be relied upon to maintain confidentiality and provide unconditional support when needed, there is a reasonably good support system in place that can be strengthened over time. 

Key Indicators: 

  • The client has a strong or reasonably good support system 

  • The client is comfortable interacting with members of their cultural or faith community 

  • The client feels safe at home, work, and among peers 

  • The client challenges and responds to stigma when they encounter discriminatory behavior (in general, not necessarily directed towards them) 

Alternatively, if there are large gaps in the client’s support environment, the development of a safety plan is necessary to ensure the client’s welfare should they decide to move forward with disclosure in an obstructive environment. 

The client can be guided through to the final stage of the process once they feel safe enough to disclose and is familiar with the established safety plan. If the client is not yet comfortable at this stage, more counseling may be needed. Reviewing previous steps in the intervention may be necessary in order to reestablish motivation and/or to reevaluate the client’s environment in order to determine if there has been a change in circumstances or readiness to disclose. 

Key Indicators

  • The client can illustrate both positive and negative reactions to their disclosure 

  • The client can list several ways in which disclosure might impact their health, family, happiness, future, etc. 

  • The client is aware of the benefits and risks of disclosure and can provide suggestions or potential solutions to resolving conflict and mitigating risks 

Once the client has reached this stage successfully, it is recommended that the client and care provider/ peer develop a disclosure plan together. The client must feel comfortable with all the details of the disclosure plan. The disclosure plan should be practical and comprehensive, as it should also have sufficient detail to take into account different scenarios, potential outcomes (both positive and negative), and impacts on the client. 

Key Indicators: 

  • The client can clearly map out potential reactions and steps they can take in response to the reaction in question 

  • The client has chosen how they want to disclose (in person vs. over the phone), and who they want present and what their roles will be 

  • The client has taken into consideration where disclosure will take place(home, work, time of day, etc. and repercussions of disclosing in different spaces at different times) 

  • The client can outline possible sources of support for the person being disclosed to 

  • The client feels prepared to answer questions regarding HIV if they arise 

At this stage of the process, clients should be encouraged to continuously monitor and express their feelings and thoughts, both negative and positive. Disclosure is a process that is wrought with emotion and therefore some level of nervousness is common. However if the client is very hesitant or exhibits extreme agitation, return to previous steps until the client is ready to move forward. In most cases 100% readiness cannot always be achieved, however once the client is sufficiently comfortable and you are confident in your assessment of and rapport with the client, the final step is to execute the disclosure plan while ensuring that all support systems are in place.

Key Indicators: 

▪ ALL the components of the safety plan accounted for (cell phone, cash for transportation, housing etc.) 

▪ The client feels comfortable and understands ALL aspects of the safety plan 

▪ If the client does not feel comfortable with the safety plan and would still like to disclose, revisit previous steps of the disclosure model to address any unresolved challenges or questions 

Things to consider after disclosure: 

  • Debrief: will be important to address important things like partner testing, legal counsel if necessary, etc. 

  • Assess: whether additional support is required, the types of support and duration 

  • Provide: referrals as needed 

  • Follow-up: until the client indicates they no longer require follow-up support 

  • Determine: if further disclosures need to take place (the client may feel encouraged by the experience and may identify others they want to disclose to) 

  • Develop: strategies for breaches of confidentiality after disclosure 

The tools shared here are meant to be used by service providers, peers, and participants throughout the HIV disclosure model to track progress and challenges through each step of the disclosure model. The Learning Matrix-Participant Assessment is a template that should be used by service providers to gauge the client’s level of comfort with each step. The tool is meant to outline whether or not more time should be spent on a particular step or whether or not to move to the next step.

Tools & Learning Matrix-Participant Assessment 

 
Contact:

Women's Health in Women's Hands (WHIWH)

2 Carlton Street, Suite 500, Toronto ON M5B 1J3

(T)  416 593 7655

(W)  www.whiwh.com (CHC)