Disclosure Programming: A Review of the Evidence

For people living with HIV the decision to disclose their HIV status to others is mostly a personal decision (except when there is a legal requirement to disclose to sexual partners). Although there may be significant benefits to disclosing an HIV status to others there may also be significant drawbacks.

This review examines the evidence related to HIV disclosure and focuses on disclosure to sexual partners, family and friends, where most of the intervention research is concentrated. This review does not examine involuntary disclosure (where someone's HIV status is divulged without their consent) or disclosure in healthcare or the workplace.

What Are the Findings of the Evidence Review?

The available scientific literature was reviewed to determine the impact of disclosure interventions.

1. There is mixed evidence on the impact of stand-alone disclosure interventions on rates of disclosure to sex partners. A systematic review found that disclosure rates increased significantly among participants in stand-alone disclosure interventions but could not make broad conclusions. A randomized controlled trial (RCT) did not find any significant difference between a group of men exposed to the intervention and a control group (strength of the evidence is mixed).
2. There is mixed evidence on the impact of safer sex interventions with a disclosure component on rates of disclosure to sex partners. A randomized controlled trial found that participants in the intervention group were significantly more likely to consider the costs and benefits of disclosure three months and six months after the intervention compared to a control group. However, four studies -- two RCTs and two quasi-experimental studies -- did not find any significant difference between intervention groups and control groups (strength of the evidence is mixed).
3. There is mixed evidence on the impact of stand-alone disclosure interventions designed to help people living with HIV disclose to family. One randomized controlled trial found a significant increase in disclosures to children in the intervention group compared to the control group (33% versus 7.3%). Although disclosure rates were higher in two other RCTs that compared intervention groups to control groups, the findings were not significant (strength of the evidence is mixed).
4. Safer sex interventions with a disclosure component for HIV-positive people reduce the number of sex acts with partners who are HIV negative or of unknown HIV status. Three randomized controlled trials and two quasi-experimental studies of safer sex interventions that included a disclosure component found that intervention group participants significantly reduced the number of sex acts with partners who are HIV negative or of unknown HIV status compared to control groups. One RCT found a 73% reduction compared to the control group (the strength of the evidence is strong).
5. Safer sex interventions with a disclosure component for HIV-positive people reduce the participants' number of HIV-negative partners. Evidence suggests that safer sex interventions with a disclosure component reduce the number of HIV-negative sex partners significantly compared to control groups (strength of the evidence is moderate).
6. Participants are satisfied with safer sex interventions with disclosure components and find them acceptable. Evidence suggests that participants in safer sex interventions with a disclosure component report being satisfied with the intervention. They also report finding the interventions acceptable (strength of the evidence is moderate).
7. Participants find safer sex interventions with disclosure components useful. Evidence suggests that participants find safer sex interventions with disclosure components useful (strength of the evidence is limited).
8. Disclosure interventions boost participants' confidence to disclose. Evidence suggests that both stand-alone disclosure interventions and safer sex interventions with a disclosure component improve participants' confidence to disclose (strength of the evidence is moderate).
9. Stand-alone disclosure interventions improve mental health outcomes. Evidence suggests that stand-alone disclosure interventions improve the mental health outcomes -- anxiety, depression and well-being -- of participants (strength of the evidence is moderate).
10. Disclosure interventions improve communication skills and build disclosure strategies. Evidence suggests that both stand-alone disclosure interventions and safer sex interventions with a disclosure component improve participants' community skills and help them build disclosure strategies (strength of the evidence is moderate).

In Canada, a number of programs and resources by Université du Québec à Montréal, CTAC (formerly known as Canadian Treatment Action Council), Ontario AIDS Network, Ontario Organizational Development Program, Women's Health in Women's Hands, Positive Living BC and Positive Women's Network currently provide guidance on disclosure for service providers and people living with HIV.

What Is Disclosure?

HIV disclosure is the process of revealing, when 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.

Some people may choose to keep their HIV-positive status private from everyone other than their HIV healthcare provider, although studies suggest the percentage of people who have never disclosed to anyone in their social circle is low, between 4% and 16%.^2,3,4

Disclosure to sexual partners may be the most difficult to do. Despite the challenge, studies suggest that rates of disclosure to sexual partners are high, between 58% and 95%.^2,3,4,5,6,7 This rate may be high due to a legal duty to disclose as opposed to a choice to disclose.

What Are Some of the Benefits of People Living With HIV Disclosing Their -Positive Status to Sexual Partners, Family and Friends?

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,^8,9,10,11,12 better self-esteem,^8,10 lower feelings of depression^8,10 and increased intimacy with sex partners.⁸

Disclosure is also associated with better health and healthcare outcomes. Research shows disclosure is associated with retention in HIV care,^13,14 and HIV treatment adherence.¹⁵

What Are Some of the Drawbacks of People Living With HIV Disclosing Their Positive Status to Sexual Partners, Family and Friends?

There are also clear potential negative consequences for people living with HIV who disclose their positive status. Although reports of negative reactions to disclosure are relatively low -- between 3% and 15% -- they are a risk for people living with HIV.¹ The risks of disclosure include feelings of abandonment or rejection,^16,17 loss of family and friends,¹⁸ stigma and discrimination,^8,16,17,19 and the threat or experience of violence and abuse.^8,18,20

What Factors Impact a Person's Decision to Disclose?

A number of factors influence the decisions of people living with HIV to disclose their HIV status.

Stigma may be an important factor in the decision for people living with HIV to disclose their positive status. Research among men who have sex with men (MSM) found that fear of stigma from others was a reason for non-disclosure.¹⁷ In addition to the perception of outside stigma, internal stigma can also impact a person's decision to disclose. A study among black MSM found that participants who reported a higher level of internal stigma about their HIV status reported less disclosure to family and sexual partners.²¹

Life stress and stress related to disclosure may also affect a person's decision to disclose. A study among people who were newly diagnosed with HIV found that participants who perceived disclosure to be stressful coped by not disclosing.²² The same study also found that people who found keeping their HIV-positive status a secret too stressful often chose to disclose.

In addition to stigma and stress, previous disclosure experiences factor into a person's decision to continue disclosing. Two studies found that negative experiences with disclosure deterred people living with HIV from disclosing to other people.^22,23 One study found that positive disclosure experiences motivated some people living with HIV to be more open about their status.²³

Different factors may impact the decision of parents to disclose to their children. One study found that parents living with HIV who have large social networks were more likely to have disclosed their status to their children.¹¹ Stress may also play a part in parents' decision to disclose to their children. One study found that parents who reported more stressful life events than other parents disclosed their HIV-positive status to their children.¹¹ Parents are also more likely to disclose their HIV-positive status to older children and to daughters.¹¹ The same study showed that mothers are more likely to disclose their HIV-positive status to their children than fathers.¹¹

Do Disclosure Programs Work?

The available scientific literature on the effectiveness of HIV disclosure programs, from jurisdictions with an HIV epidemic comparable to ours, including the United States and European countries, was reviewed. Details on the methodology we used can be found at the end of this article. This review examines the evidence related to HIV disclosure and focuses on disclosure to sexual partners, family and friends, where most of the intervention research is concentrated. This review does not examine involuntary disclosure (where someone's HIV status is divulged without their consent) or disclosure in healthcare or the workplace.

The available scientific evidence to support each outcome was assessed and assigned an evidence rating. Although the evidence rating is somewhat flexible, ratings were based on the following criteria:

1. Strong Evidence: At least one systematic review or a large body of randomized control trials and quasi-experimental studies (and observational research) supports the ability of the intervention to impact on the outcome.
2. Moderate Evidence: Limited randomized control trials and/or quasi-experimental studies (and observational research) support the ability of the intervention to impact the outcome.
3. Limited Evidence: Observational research supports the ability of the intervention to impact the outcome.
4. No Evidence: No published research exists to support the ability of the intervention to impact the outcome.

The strength of the evidence is based on the quantity and quality of the evidence (type of study design) and not the size of the outcome.

Both stand-alone disclosure programs and safer sex programs for people living with HIV that include a disclosure component were examined and are included in this review. This means that for general safer sex interventions that include a disclosure component, it is not possible to determine what component of the intervention impacted (or not) disclosure outcomes.

All interventions were designed and researched in the United States or Europe.