March 13, 2016
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.
The available scientific literature was reviewed to determine the impact of disclosure interventions.
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.
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.
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 depression8,10 and increased intimacy with sex partners.8
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
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
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:
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.
No comments have been made.
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