Policy & Practice Toolkit for Ontario AIDS Service Organizations on Clients’ HIV Disclosure Decisions and Process

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Ontario Organizational Development Program (OODP)
Policy & Practice Toolkit for Ontario AIDS Service Organizations on Clients’ HIV Disclosure Decisions and Process

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What is the Program?

The Policy & Practice Toolkit for Ontario AIDS Service Organizations on Clients’ HIV Disclosure Decisions and Process (“the toolkit”) is a resource designed to help community-based HIV organizations support client disclosure decision-making. It guides users through disclosure policy development and practice. The toolkit, which consolidates knowledge and resources related to disclosure support from literature and practice, was developed by the Ontario Organizational Development Program (OODP) with funds from the Ontario Ministry of Health and Long-Term Care.

The toolkit is made up of two distinct but connected components:

  1. Policy templates, which can inform the creation or revision of governance/board policy and operational/staff policy
  2. Checklists to help organizations work through policy development/revision and practice change

This toolkit promotes neither disclosure nor non-disclosure of HIV status and it does not provide legal advice to agencies. Instead, it is meant to support organizations as they consider their position on, and their role in, supporting disclosure planning, discussion and decision-making among people living with HIV.

It also provides guidance for organizations on managing risk, covering such topics as how to communicate contentious issues around disclosure and how to provide support to staff who engage in disclosure discussions with clients. The toolkit also encourages agencies to consider how to handle, in policy and practice, providing support for people to whom a disclosure is made. Users of the toolkit are prompted to ask critical questions:

  • Does your agency actively support the person to whom the disclosure is made?
  • Does your agency refer this person out to other services?

By working through key questions from the toolkit, organizations can reflect on how they support disclosure decision-making and action and can act on any gaps they find.

In addition to the policy templates, OODP chose to include a component on practice (included in a section called “Program Standards” and in the checklist), which is unusual for a policy tool. This was done to help organizations operationalize their policies.

The mandate of the OODP is to strengthen the capacity of HIV organizations and programs in Ontario. The goal is to help local HIV programs to determine their direction and to take responsibility for their own organizational development. The OODP is funded by the Ontario Ministry of Health and Long-Term Care and the Public Health Agency of Canada.

Why Was the Program Developed?

HIV disclosure is the process of revealing, when one is ready, one’s HIV-positive status to others.1 People living with HIV are likely to disclose their status to family, friends, sexual partners, colleagues, healthcare providers and others gradually and selectively over time. Disclosure strategies—disclosing to everyone, disclosing to some people and disclosing to no one—may also change over time.

There can be distinct benefits for people living with HIV to disclose their positive status to family, friends and sexual partners. Research shows that people living with HIV who disclose their status to others report experiencing increased social support,2,3,4,5,6 better self-esteem,2,4 decreased feelings of depression2,4 and increased intimacy with sex partners.2 Disclosure is also associated with better health outcomes and improved healthcare. Research shows disclosure is associated with retention in HIV care7,8 and HIV treatment adherence.9

However, there are also clear potential negative consequences for people living with HIV who disclose their positive status. Although negative reactions to disclosure are reported to occur relatively infrequently—between 3% and 15% of disclosures—they are a risk for people living with HIV.1 The risks of disclosure include feelings of abandonment or rejection,10,11 loss of relationships with family and friends,12 stigma and discrimination 2,10,11,13 and the threat or experience of violence and abuse.2,[12,14

Deciding whether or not to disclose one’s HIV status, and then acting on that decision, is part of a deeply personal lifelong process for people living with HIV. Community-based HIV organizations can play a very important role in helping people living with HIV to control and navigate their HIV disclosure decisions. Support for HIV disclosure decision-making is an important component of HIV prevention, care, treatment and support work.

At the time this toolkit was written, most HIV community organizations in Ontario, the province where the toolkit originated, did not have defined policies related to support for disclosure decision-making and were not proactive in supporting client disclosure decision-making. Most disclosure support was provided in a reactive way, when clients asked, and often solely through the lens of the criminalization of HIV non-disclosure.

Having a disclosure support-related policy became a requirement for organizations wishing to obtain funding from the Ontario Ministry of Health and Long-Term Care’s HIV program in 2014. This toolkit was developed on the premise that organizations can better support people living with HIV around disclosure decision-making through proactive policy and practice that considers possible benefits and harms including the public health or criminal implications of non-disclosure.

Although it is helpful that organizations react when clients ask for help when circumstances are such that a disclosure will have to be made very soon, evidence 15 and anecdotal reports indicate that people living with HIV can experience more positive outcomes of disclosure decision-making when given the opportunity to reflect and plan and receive support to safely disclose their HIV status over the long-term. This requires thoughtful  action on the part of agencies providing services to people living with HIV.

The Policy & Practice Toolkit for Ontario AIDS Service Organizations on Clients’ HIV Disclosure Decisions and Process was developed by the OODP to help agencies in Ontario to establish disclosure support-related policy and programs. Disclosure support-related policies are complex because of the criminal context of HIV disclosure, HIV stigma and new biomedical advances in HIV. Disclosure is also complicated because there are many aspects of a person’s life where it might be considered and carried out, such as in relationships with sexual partners, family, friends, healthcare providers, employers, and colleagues and supervisors in volunteer work.

A toolkit was identified by the Ministry of Health and Long-Term Care and OODP as the most useful way to help organizations to develop and implement a thorough, thoughtful policy. The toolkit was also intended to support knowledge-sharing, increase capacity, and create some common language and policy and practice approaches across the HIV sector in Ontario.

  1. a. b. Obermeyer CM, Baijal P, Pegurri E. Facilitating HIV disclosure across diverse settings: a review. American Journal of Public Health. 2011 Jun;101(6):1011–23.
  2. a. b. c. d. e. f. Parsons J, VanOra J, Missildine W et al. Positive and negative consequences of HIV disclosure among seropositive injection drug users. AIDS Education and Prevention. 2004;16(5):459–75.
  3. Kalichman S, DiMarco M, Austin J et al. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. Journal of Behavioral Medicine. 2003;26(4):315–32.
  4. a. b. c. Zea M, Reisen C, Poppen P, et al. Disclosure of HIV status and psychological well-being among Latino gay and bisexual men. AIDS and Behavior. 2005;9(1):15–26.
  5. Lee MB, Rotheram-Borus MJ. Parents’ disclosure of HIV to their children. AIDS. 2002;16(16):2201–7.
  6. Letteney S. Mothers disclosure of maternal HIV status to children: key psychosocial correlates. Journal of HIVAIDS and Social Services. 2006;5(1):67–84.
  7. Wohl AR, Galvan FH, Myers HF et al. Do social support, stress, disclosure and stigma nfluence retention in HIV care for Latino and African American men who have sex with men and women? AIDS and Behavior. 2011 Aug;15(6):1098–110.
  8. Mellins CA, Havens JF, McCaskill EO et al. Mental health, substance use and disclosure are significantly associated with the medical treatment adherence of HIV-infected mothers. Psychology Health and Medicine. 2002 Nov;7(4):451–60.
  9. Stirratt MJ, Remien RH, Smith A et al. The role of HIV serostatus disclosure in antiretroviral medication adherence. AIDS and Behavior. 2006 Sep;10(5):483–93.
  10. a. b. Derlaga VJ, Winstead BA, Greene K et al. Reasons for HIV disclosure/nondisclosure in close relationships: testing a model of HIV–disclosure decision making. Journal of Social and Clinical Psychology. 2004;23(6):747–67.
  11. a. b. Kingdon MJ, Barton S et al. Facilitators and barriers to HIV status disclosure among HIV-positive MSM age 50 and older. Journal of Gay and Lesbian Mental Health. 2016; 20 (1): 41-56.
  12. a. b. Gielen A, Fogarty L, O’Campo P et al. Women living with HIV: disclosure, violence, and social support. Journal of Urban Health. 2000;77(3):480–91.
  13. Smith R, Rossetto K, Peterson BL. A meta-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care. 2008 Nov;20(10):1266–75.
  14. Brown MJ, Serovich JM, Kimberly JA. Depressive symptoms, substance use and partner violence victimization associated with HIV disclosure among men who have sex with men. AIDS and Behavior. 2016 Jan;20(1):184–92.
  15. Rapid Response Services. Disclosure of HIV-positive status: towards the development of guidelines, strategies and interventions [Internet]. Ontario HIV Treatment Network; 2014 [cited 2015 Dec 15]. Available from: http://63.135.124.232//wp-content/uploads/2014/11/RR66-Disclosure.pdf

How Does the Program Work?

The toolkit provides clear directions on how organizational leadership can develop a disclosure-related policy. It does this through a step-by-step approach that encourages the user to reflect on the current HIV disclosure-related practice in their organization, if any, and their desired disclosure-related practice. It recommends text for the disclosure-related policy and provides tips for how the organization can modify the text to suit its local context.

It also includes tips to help organizations ensure their new policy is appropriate, feasible and relevant to their organizational mandate and recommendations on how organizations can put their policy into practice. The toolkit is meant to make it easy for organizations to consider how they currently manage disclosure planning and decision-making among clients and figure out how to address gaps in service through policy and practice change.

In Ontario, the toolkit was promoted through email and by a webinar to the leaders of every community-based HIV organization in Ontario funded by the HIV and Hepatitis C Program of the Ministry of Health and Long-Term Care. The OODP also promoted the fact that support was available from consultants, which allowed for further follow-up with these organizations to increase uptake and use of the toolkit.

How organizations use the toolkit

Leadership in organizations have used a wide range of structural processes to implement policy change on disclosure in their organizations. Changes have been led by a variety of teams:

  • ad hoc board subcommittee
  • existing GIPA/MEPA or PHA committee of the agency or its board
  • senior staff-led team
  • staff/volunteer/client team
  • agency working group
  • regional working groups

Once a process for developing a policy or implementing a policy change and team structure is identified, the organization’s leaders review the entire toolkit. Then, they can begin to develop a disclosure-related policy for their agency using the toolkit’s step-by-step approach.

The first step is to critically reflect on their work to ensure that their disclosure policy is sensitive to issues specific to the populations that they serve and other nuances of their local context. For example, it is very important to consider local patterns of criminalization of HIV non-disclosure when developing and operationalizing a disclosure policy. A history of multiple, very public, charges in a community will have affected the knowledge, perceptions and needs of community members, and these in turn should influence what is included in the disclosure policy. It may also be important to consider how the agency’s previous action or inaction with respect to disclosure has influenced the environment.

The second step is to examine existing organizational policies and agency values that may relate to disclosure, even if they don’t mention disclosure specifically. For example, the existing policy on confidentiality for staff, as well as the human resource policy, may relate to disclosure but not mention it specifically (e.g., the confidentiality policy may outline how to ensure client confidentiality in record-keeping, but it may not specifically name “disclosure”). It is important to identify any other policy documents that need to be updated to reflect the organization’s new policy on disclosure. The toolkit urges the user to consider their agency values and whether work needs to be done to change the disclosure-related beliefs/values of their staff or volunteers.

The final step is for the organization’s leaders to consider where in current programming they can enhance disclosure support in a more intentional way. They are encouraged to identify key practice changes to put the new disclosure policy into practice. To do this, organizations can compare their current practices with the program standards listed in the toolkit and consider where they can integrate the toolkit’s practice recommendations into their work. As they go through this process, organizations can ask themselves critical questions posed in the toolkit:

  • What are the organization’s key points of contact with people living with HIV?
  • Where are people living with HIV informed of agency support around disclosure?

The purpose is not to add work or cost to organizations. Rather, the toolkit helps agencies to find opportunities to integrate the disclosure program standards into their current work such as into their intake process or the functioning of existing support groups.

To help organizations to implement their newly developed disclosure policies and program standards, the toolkit also highlights the fact that ethical dilemmas may be faced by staff as they provide support around disclosure decision-making. Ethical dilemmas come up when the rights, interests or values of two or more people involved in a disclosure situation are in conflict (e.g., when a client tells the staff person that he has chosen to not disclose his status to his HIV-negative sexual partner and also chooses to continue to have unprotected sex and not take HIV medication).

The toolkit emphasizes the importance of developing a concrete process for dealing with ethical dilemmas that arise for staff and provides guidance on how to do so, including highlighting an existing resource called DIFFICULT DECISIONS: A Tool for Care Workers Managing Ethical Dilemmas When Caring for Children and Families of Key Populations: People Living With HIV, People who use Drugs, Sex Workers, Transgender People, Gay Men, and other Men who have Sex with Men.

Required Resources

  • The Policy & Practice Toolkit for Ontario AIDS Service Organizations on Clients’ HIV Disclosure Decisions and Process
  • Time for organizational leadership to review current disclosure policy and practice and develop new policy and practice, as appropriate
  • Staff time to operationalize the policy , including necessary training

Challenges

  • HIV disclosure decision-making and action is complex. The complexity varies by population, jurisdiction and client, and organizations must recognize that they have to understand the needs of each client and tailor the support they provide accordingly.
  • It takes time to develop new policies or adapt existing ones to reflect disclosure decision-making. Agencies must prioritize this work among multiple other important activities.
  • Establishing a process for policy development or revision can be cumbersome if the agency does not have a strong track record for policy development. Considerations include greater involvement of people living with HIV/meaningful engagement of people living with HIV (GIPA/MEPA), board input, staff input and client input.
  • A high volume of changes may need to be made. Many agencies may discover that numerous policy revisions are required and practice changes are needed. It is recommended that organizations take a step-wise approach to ensure that this work moves forward but in a manageable way.
  • Ethical dilemmas may arise among staff as they support clients with disclosure decision-making. Agencies should create concrete processes to deal with these ethical dilemmas.
  • Staff training will be needed. The organization needs to prioritize training staff on the new policies/practice.

Evaluation

The OODP will be evaluating the uptake and perceived usefulness of the toolkit among AIDS service organizations in Ontario in mid-2016. Most, if not all, community-based HIV organizations in Ontario have used the toolkit in their policy development process. Anecdotally, feedback has been very positive. Many have already developed new disclosure-related policy or practice or revised existing policy and practice in this area.

Lessons Learned

  • Disclosure support is happening in organizations across Ontario, even if it is in reactive ways.
  • There is an opportunity to step up our response to our clients’ disclosure decision-making needs and think beyond what we currently do in this regard.
  • Once an organizational commitment has been made, the process of policy development, reflection and revision, and practice change is manageable and more easily and effectively achieved with the use of the toolkit.

Other Useful Materials

Information found on the CATIE website

Contact Information

Wendy Pinder
Program Administrator
Ontario Organizational Development Program (OODP)
Email:  admin@oodp.ca
Phone:  1-855-761-9209 (toll-free)
Website:  www.oodp.ca