Disclosure programming: A review of the evidence

Prevention in Focus PiF 2016 Spring

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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.

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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 depression8,10 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.

Disclosure outcomes

Disclosure to sex partners

Disclosure to sex partners has distinct benefits such as 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 In Canada, people living with HIV also have a legal duty to disclose their HIV-positive status to their sex partners before having sex that poses a realistic possibility of transmission.24,25

Stand-alone disclosure interventions

There is mixed evidence on the effectiveness of stand-alone disclosure interventions in increasing disclosure to sex partners from one systematic review,26 one randomized controlled trial27 and one observational study.28 The systematic review,26 which included five studies, found that three of the studies (60%) showed that disclosure to sex partners significantly increased after a disclosure intervention compared to various control groups. However, there was significant variation among the interventions included in the review, which means broad conclusions on the effectiveness of these disclosure interventions could not be made.

The randomized controlled trial27 studied a stand-alone disclosure intervention for MSM that offered six three-hour, in-person, peer-led group sessions over six weeks. Participants learned about disclosure, relationships and mental health through large and small group activities. This intervention was compared to a one-time two-hour intervention that consisted of information about HIV, sexually transmitted infections (STIs) and safer sex delivered through a panel presentation. The researchers did not find any significant difference in disclosure rates to sex partners in the intervention or control groups three months (41% versus 45%) or six months (40% versus 45%) after the intervention.

The observational study28 compared the effect of disclosure counselling on rates of disclosure among people living with HIV. Participants were asked to fill out a survey about the disclosure counselling they had received in the past. Researchers divided participants into four groups:

  1. people counselled about disclosure at diagnosis only
  2. people counselled at diagnosis and at least once by their current clinician
  3. people counselled by their current clinician only
  4. people who had never received disclosure counselling.

The study found that disclosure rates to sex partners were significantly higher (79%) among people who were counselled at diagnosis and then again by their current clinician (group 2) compared to all the other groups. The disclosure rate was 45% among people counselled at diagnosis (group 1), 55% among those who were counselled by their current clinician only (group 3), and 51% among those who had never received disclosure counselling (group 4).

Safer sex interventions with a disclosure component

Many disclosure interventions are integrated into larger safer sex programs aimed at reducing the risk of HIV transmission. There is mixed evidence from three randomized controlled trials29,30,31 and two quasi-experimental studies32,33 that safer sex interventions that include a disclosure component impact HIV disclosure rates to sex partners.

The first randomized controlled trial30 studied the impact of two videos (one dramatic and one a documentary) and a webpage on disclosure for HIV-positive and HIV-negative MSM. These two intervention arms were compared to a control group which did not receive any intervention. The study found that 60 days after the intervention, significantly more MSM who saw the videos reported full disclosure to sex partners (47%) compared to the control group (40%). However, the webpage failed to significantly impact full disclosure, with only 45% of MSM reporting full disclosure.

The second randomized controlled trial29 studied a safer sex intervention with a disclosure component called Protect and Respect. This in-person, group-level, 90-minute weekly intervention for HIV-positive women focused on disclosure, sexual risk reduction, HIV and STI information, healthy relationships, condom negotiation, problem solving and goal setting. In addition, participants attended weekly 60-minute in-person peer-led sessions that were less structured and allowed participants to explore the skills they learned in the weekly intervention. The intervention also included brief messages about safe sex and disclosure from healthcare providers during scheduled appointments. The control group only received brief messages from their healthcare providers during scheduled appointments.

The study found that significantly more disclosure occurred to sex partners in the intervention group at six months after the intervention compared to the control group (83% versus 61%). No statistically significant differences were found 12 and 18 months after the intervention. In a further analysis, which took into account other factors, no statistical differences were found in disclosure rates at any of the time points. However, in qualitative research related to the project, participants in the intervention arm of the study reported that sharing disclosure stories and role-playing disclosure scenarios was valuable.

The third randomized controlled trial34 studied an in-person group-level safer sex intervention with a disclosure component for HIV-positive people. Participants attended five two-hour sessions over 2.5 weeks. Sessions aimed to help participants develop disclosure and safer sex skills. Scenes from popular films were used to reinforce messages. Intervention participants were compared to a control group of HIV-positive participants in a support group of the same length and format that did not offer skills development.

The study34 found that participants in the intervention group were significantly more likely to consider the costs and benefits of disclosure three months after the intervention ended compared to the control group (62% versus 50%). Six months after the intervention, the difference between the two groups was no longer significant (59% versus 55%). The study did not measure rates of actual disclosure.

A quasi-experimental study32 examined a two-module, in-person safer sex intervention with a disclosure component for HIV-positive youth recruited from a youth HIV clinic. In the first module, “Stay Healthy,” which was delivered over 12 sessions, information focused on the participants coping with learning their serostatus, including issues of disclosure. Module 2, “Act Safe,” delivered over 11 sessions, focused on safer sex. These 23 sessions were delivered over 21 months. Participants in the intervention were compared to HIV-positive youth receiving regular HIV clinical healthcare at the youth HIV clinics where intervention participants were recruited. The study found that youth in the intervention group increased disclosure rates to sex partners from 54% to 64% compared to participants in the control group who increased disclosure rates from 54% to 57%. However, these results were not statistically significant.

A quasi-experimental study33 explored the effects of a safer sex intervention with a disclosure component on the rates of disclosure to sex partners among HIV-positive MSM. The intervention combined a computer-assisted survey with tailored sexual risk-reduction counselling from a healthcare provider. Counselling was tailored to each participant and targeted to the sexual risk behaviour that the participant was most ready to change, based on the results of the survey. The study did not find a statistically significant change in disclosure rates. Disclosure rates in the study group were already very high (97% with HIV-positive partners and 80% with HIV-negative partners).

Disclosure to others: family and children

Disclosure of their HIV-positive status to family may have significant benefits for people living with HIV, including increased adherence,15 social support,8,9,10 improved self-esteem,8,10 and lower feelings of depression.8,10

Stand-alone disclosure interventions

There is mixed evidence from three randomized controlled trials35,36,37 that participants in disclosure interventions geared toward them telling family or children of their HIV-positive status are more likely to disclose to their loved ones than control groups.

The first randomized controlled trial35 studied the effect of a psychologist-led, group-level, in-person stand-alone disclosure intervention for the caregivers of children living with HIV. Caregivers attended eight two-hour sessions held monthly where issues such as guilt, barriers to disclosure, and confidence-building around disclosure were discussed. These participants were compared to a control group of caregivers of HIV-positive children that did not receive the psychotherapeutic intervention. The study found that after one year, the disclosure rate in the intervention group was 60% versus 14% in a control. This finding was not statistically significant because of the small sample size of the study.

The second randomized controlled trial36 studied the effect of TRACK, an individual-level stand-alone disclosure intervention for HIV-positive mothers. Mothers attended three in-person individual counselling sessions over three weeks and received one follow-up phone call. During these sessions, a therapist discussed child development, communication and role-play scenarios for disclosing to children. Participants in the control arm received standard medical care and case management. The study found women in the intervention were six times more likely to disclose to their children than the mothers in the control group nine months after the intervention (33% versus 7.3%). This finding was statistically significant.

The final randomized controlled trial37 studied the effect of a stand-alone disclosure intervention that provided four weekly individual in-person counselling sessions to HIV-positive MSM to help them disclose to family. The sessions included discussions of best and worst disclosure experiences and planning for future disclosures. Intervention participants were compared to a control group of HIV-positive MSM on a wait list for the intervention. The percentage of family members to whom the intervention participants had disclosed increased from 46% to 52% three months after the intervention. In the control group, it increased from 40% to 43%. Neither increase was statistically significant.

Transmission risk behaviour

Disclosure by people living with HIV of their HIV-positive status to sexual partners may be one approach in a larger risk-reduction strategy to prevent HIV transmission during sex. Disclosure can be the first step in negotiations of safer sex. Disclosure by the person with HIV may lead sex partners to make disclosures of their own. For example, they may disclose their own HIV-positive status, their viral load, their STI status, and HIV-negative partners may disclose their use of pre-exposure prophylaxis (PrEP).

Ultimately, disclosure in the context of sex may reduce the risk of HIV transmission to HIV-negative partners and reduce the transmission of other sexually transmitted infections (STIs) among partners, regardless of HIV status.

Unprotected sex with partners who are HIV negative or of unknown status among participants in safer sex interventions with a disclosure component

There is strong evidence from five randomized controlled trials34,38,39,40,41 and two quasi-experimental studies32,33 that participants in safer sex interventions that include a disclosure component are more likely to reduce acts of unprotected sex with partners who are HIV negative or of unknown status compared to participants in control groups.

The first randomized controlled trial38 studied an individual-level safer sex intervention with a disclosure component for HIV-positive people called Safe Talk. Safe Talk uses motivational interviewing over four monthly in-person sessions, with supporting tools such as booklets and letters. All safer sex information is tailored to the participant. Intervention participants were compared to a control group of HIV-positive people who received a heart health intervention of the same length and format. The study found that the average number of unprotected sex acts within the past three months with at-risk partners decreased significantly from 2.0 at baseline to 0.5  eight months after the end of the program. After taking into account other factors, the study found that the participants in the intervention group reduced the average number of unprotected sex acts with partners who were HIV negative or of unknown status by 73% compared to the control group over eight months.

The second randomized controlled trial34 studied a group-level safer sex intervention with a disclosure component for HIV-positive people. Participants attended five two-hour in-person sessions over 2.5 weeks. Sessions aimed to help participants develop disclosure and safer sex skills. Scenes from popular films were used to reinforce messages. Intervention participants were compared to a control group of HIV-positive participants in a support group of the same length and format that did not offer skills development.

The study34 found that participants in the intervention group significantly reduced acts of unprotected vaginal and anal sex within the past three months with partners who were HIV negative or of unknown status from 0.9 acts at baseline to 0.3 acts three months after the end of the intervention and to 0.2 acts six months after the intervention. Over the same period, the control group increased their number of unprotected sex acts from 0.4 at baseline to 0.5 three months after the intervention and 1.0 six months after the intervention.

The third randomized controlled trial39 studied an individual-level safer sex intervention with a disclosure component for HIV-positive MSM. The intervention, known as The Healthy Living Project, consisted of fifteen 90-minute in-person counselling sessions that covered modules on stress, coping, adjustment, disclosure, STIs, medication adherence and active participation in healthcare. Intervention participants were compared to a control group of HIV-positive MSM on a wait list to start the intervention. The study found a significant reduction in sex acts with partners who were HIV negative or of unknown status in the intervention group compared to the control group. The relative risk reduction was 22% at five months, 38% at 10 months, 52% at 15 months and 62% at 20 months.

The fourth randomized controlled trial40 studied an individual-level safer sex intervention with a disclosure component for HIV-positive MSM called Project Enhance. The intervention consisted of five 50 to 90 minute in-person sessions with a social worker over three months. Four booster visits were scheduled three, six, nine and 12 months after the end of the original intervention. Social workers used a workbook to counsel participants on safer sex, party drugs, managing stress, triggers and disclosure. Social workers used motivational interviewing to identify barriers to safer sex and develop new skills to help participants change their behaviour. Intervention participants were compared to a control group of HIV-positive MSM who received standard care. The study did not find a significant difference in the average number of unprotected sex acts with partners who were HIV negative or of unknown status between the intervention and the control groups.

The fifth randomized controlled trial41 studied Positive Choices, a safer sex intervention with a disclosure component for newly diagnosed HIV-positive MSM. During three 60-minute in-person sessions, HIV counsellors covered topics such as sexual health, risk-reduction planning, disclosure and communication skills. The third session was a recap and booster for the first two sessions. Intervention participants were compared to a control group that received standard care and access to the health centre’s comprehensive support services. The study found the intervention did not have a significant impact on the number of unprotected sex acts with partners who were HIV negative or of unknown status compared to the control group. However, the study did find that participants in the intervention group decreased their frequency of unprotected sex acts with partners who were HIV negative or of unknown status at a faster rate than the control group over the year following the intervention.

The first quasi-experimental study32 studied a two-module, in-person safer sex intervention with a disclosure component for HIV-positive youth recruited from a youth HIV clinic. In the first module, “Stay Healthy,” which was delivered over 12 sessions, information focused on the participants coping with learning their serostatus, including issues of disclosure. Module 2, “Act Safe,” delivered over 11 sessions, focused on safer sex. These sessions were delivered over 21 months.

Participants in the intervention were compared to a control group of HIV-positive youth receiving regular healthcare at the youth HIV clinics where intervention participants were recruited. The study also compared intervention group attendees to participants who were assigned to the intervention group but who did not attend any intervention sessions (non-attendees).

The study found that participants in the intervention group who attended at least one session significantly reduced the number of unprotected sex acts compared to both the control group and non-attendees. Intervention group participants who attended at least one session reported an average of 2.8 acts of unprotected sex (over the past 15 months) compared to 15.5 acts for the control group and 10.6 acts for non-attendees 15 months after the intervention.

The second quasi-experimental study33 explored the effects of a safer sex intervention with a disclosure component on the rates of unprotected sex among HIV-positive MSM with partners who were HIV negative or of unknown status. The intervention combined a computer-assisted survey with tailored in-person sexual risk-reduction counselling from a healthcare provider. Counselling was tailored to each participant and targeted to the sexual risk behaviour that the participant was most ready to change, based on the results of the survey. The study found that the intervention significantly reduced the number of unprotected anal insertive sex acts with partners who were HIV negative or of unknown status from an average of 0.73 sex acts (over the past three months) reported during the first visit to 0.02 by the fifth visit.            

Reduction in the number of sex partners

There is moderate evidence from two quasi-experimental studies32,33 that participants in a safer sex intervention with a disclosure component reduced the number of sex partners compared to control group participants.

The first quasi-experimental study32 studied a two-module, in-person safer sex intervention with a disclosure component for HIV-positive youth recruited from a youth HIV clinic. The first module, “Stay Healthy,” was delivered over 12 sessions, and focused on coping with learning their serostatus, including issues of disclosure. Module 2, “Act Safe,” delivered over 11 sessions, focused on safer sex. These sessions were delivered over 21 months.

Participants in the intervention were compared to a control group of HIV-positive youth receiving regular healthcare at the youth HIV clinics where intervention participants were recruited. The study also compared the results of intervention group attendees to participants assigned to the intervention group but who did not attend any sessions (non-attendees). The study found that participants in the intervention group who attended at least one session significantly reduced the number of HIV-negative partners compared to intervention group non-attendees. Intervention group attendees reported an average of 1.4 HIV-negative partners (over the past 15 months) compared to 3.1 HIV-negative partners in the intervention group non-attendees 15-months after the intervention. There was not a significant difference in the number of HIV-negative partners between the intervention group and the control group.

The second quasi-experimental study33 explored the effects of a safer sex intervention with a disclosure component on the rates of disclosure to sex partners among HIV-positive MSM. The intervention combined a computer-assisted survey with tailored sexual risk-reduction in-person counselling from a healthcare provider. Counselling was tailored to each participant and targeted to the sexual risk behaviour that the participant was most ready to change, based on the results of the survey. The study found that intervention participants significantly reduced their number of male sexual partners of any status, from an average of 3.08 (over the past three months) at the first visit to 1.63 by the fifth visit.

Client-reported outcomes

Disclosure is a personal decision that people living with HIV must make many times during their lives. Effective interventions that support people to disclose should be acceptable and useful. They should also build confidence in people to disclose safely and effectively and help them develop the communication skills needed to broach the topic. Finally, disclosure programs should have a positive impact on peoples’ outlook, including on mental health and well-being measures.

Intervention satisfaction/acceptability

Disclosure interventions must be acceptable to people living with HIV so they are willing to participate in them and use the skills these interventions offer. There is moderate evidence from one randomized controlled trial41 and one observational study42 that safer sex interventions that include disclosure components are satisfactory/acceptable to participants.

The randomized controlled trial41 studied Positive Choices, a safer sex intervention with a disclosure component for newly diagnosed HIV-positive MSM. During three in-person 60-minute sessions, HIV counsellors covered topics such as sexual health, risk-reduction planning, disclosure and communication skills. The third session was a recap and booster for the first two sessions. Intervention participants were asked to rate the acceptability of the intervention. The study found an average acceptability score of 3.47/4, which is high. The standard deviation was 0.47, which means that most of the acceptability ratings were close to the average.

The observational study42 explored a group safer sex intervention with a disclosure component called SHAPE. The group-level intervention uses mixed media, including video clips, to provide HIV-positive participants the information and skills needed to disclose their status and reduce HIV transmission. Participants were asked to complete a satisfaction survey. All components of the session were rated between 3.5 and 4, with 4 being the highest possible satisfaction rating. Participants were also satisfied with the facilitators. All participants rated the facilitators 3.75/4 or higher, with 4 being the highest possible rating. Both measures suggest that participants were satisfied with the intervention.

Usefulness

In addition to being acceptable, disclosure interventions must be useful to people living with HIV. There is limited evidence from one observational study42 that safer sex interventions that include disclosure components are useful to participants.

The observational study42 examined a group safer sex intervention with a disclosure component called SHAPE. The group-level intervention uses mixed media, including video clips, to provide HIV-positive participants the information and skills needed to disclose their status and reduce HIV transmission. Averages scores for the sessions ranged between 3.4 and 4.0 on a usefulness scale, with 4 being the highest possible rating. This suggests most participants found the sessions useful.

Confidence

Confidence to disclose is a key component in the process of a person living with HIV disclosing their HIV-positive status. There is moderate evidence from one randomized controlled trial29 and one quasi-experimental study43 that stand-alone disclosure interventions and safer sex interventions that include disclosure components improve participants’ confidence to disclose their HIV-positive status to other people.

The randomized controlled trial29 studied a safer sex intervention with a disclosure component called Protect and Respect. This group-level, 90-minute weekly intervention for HIV-positive women focused on disclosure, sexual risk reduction, HIV and STI information, healthy relationships, condom negotiation, problem solving and goal setting. Weekly 60-minute in-person peer-led sessions were also held that were less structured and allowed participants to explore the skills they learned in the group session. Finally, the intervention also included brief messages about safe sex and disclosure from healthcare providers during scheduled appointments. The control group only received brief messages from their healthcare providers during scheduled appointments.

Through qualitative interviews, the study29 found that participants reported feeling more confident about disclosing. However, this did not translate into any of the women disclosing their status to others. This may point to the complex, interconnected socio-structural barriers, such as stigma and violence, that impact women’s ability to disclose that they have HIV.

The quasi-experimental study43 examined an individual-level disclosure intervention among HIV-positive people of colour. The intervention used motivational interviewing over three in-person sessions that lasted up to 60 minutes. In the first phase, participants reflect on advice they might give other people living with HIV; in the second, they reflect on particular strategies they would use to disclose to others; and in the third phase, participants reflect on two or three people to whom they would like to disclose. The study found that participants reported a significant increase in disclosure confidence from 2.36/10 before the intervention to 3.25/10 six months after the intervention. Higher scores represented higher levels of disclosure confidence. Even after the intervention, the scores remain low, despite the significance of the findings. This suggests that building the confidence to disclose may be a long process.

Mental health outcomes

There is moderate evidence from one randomized controlled trial35 and one quasi-experimental study43 that stand-alone disclosure interventions have a positive impact on outcomes such as well-being, anxiety and depression.

The first randomized controlled trial35 studied the effect of a psychologist-led, group-level stand-alone disclosure intervention for the caregivers of children living with HIV. Caregivers attended eight in-person two-hour sessions held monthly. Issues related to guilt, barriers to disclosure, and confidence-building around disclosure were discussed. Participants were compared to a control group of parents of HIV-positive children that did not receive the psychotherapeutic intervention. The study found that the psychological well-being and anxiety scores of intervention group participants improved significantly compared to the control group. Psychological well-being increased in 70% of the intervention parents but in 0% of the control parents. Anxiety decreased in 60% of the intervention parents but in 0% of the control parents.

The quasi-experimental study43 examined an individual-level disclosure intervention among HIV-positive people of colour. The intervention used motivational interviewing over three sessions that lasted up to 60 minutes. In the first phase, participants reflect on advice they might give other people living with HIV; in the second, they reflect on particular strategies they would use to disclose to others; and in the third phase, participants reflect on two or three people to whom they would like to disclose. The study found average anxiety scores were reduced among participants, from 4.41/10 before the intervention to 3.76/10 six months after the intervention was finished. Higher scores indicated higher levels of anxiety.

Communication skills and strategies

Disclosing an HIV-positive status may be difficult to do for people living with HIV. Strong communication skills may be key to facilitating the process. There is moderate evidence from two randomized controlled trials29,36 that stand-alone disclosure interventions and safer sex interventions with a disclosure component improve communication skills and disclosure strategies among people living with HIV.

The first randomized controlled trial36 studied the effect of TRACK, an individual-level stand-alone disclosure intervention for HIV-positive mothers. Mothers attended three individual in-person counselling sessions over three weeks and received one follow-up phone call. During these sessions, a therapist discussed child development, communication and role-play scenarios for disclosing to children. Participants in the control arm received medical care and case management. Among mothers who disclosed in the intervention group, 85% reported they believed they handled the disclosure well; 85% agreed they were prepared to answer questions; 69% agreed they waited until they were in the right frame of mine; and 69% agreed they handled their children’s reactions well, all signs of effective communication skills and disclosure strategies. The control group was not asked about their communication skills or disclosure strategies.

The second randomized controlled trial29 studied a safer sex intervention with a disclosure component called Protect and Respect. This group-level, 90-minute weekly intervention for HIV-positive women focused on disclosure, sexual risk reduction, HIV and STI information, healthy relationships, condom negotiation, problem solving and goal setting. Weekly 60-minute peer-led sessions were also held that were less structured and allowed participants to explore the skills they learned in the group session. Finally, the intervention also included brief messages about safe sex and disclosure from healthcare providers during scheduled appointments. The control group only received brief messages from their healthcare providers during scheduled appointments. Through qualitative findings, the study found that the group helped the women share disclosure strategies. However, this improved ability to share strategies with other women did not lead to any disclosures.

Summary Table: Evidence to support disclosure interventions

 

Strong

Moderate

Limited

None

Mixed/Ineffective

Disclosure to sex partners: stand-alone disclosure interventions

 

 

 

 

X

Disclosure to sex partners: safer sex interventions with a disclosure component

 

 

 

 

X

Disclosure to children: Stand-alone disclosure interventions

 

 

 

 

X

Sex with HIV-negative or unknown status partners: safer sex interventions with a disclosure component

X

 

 

 

 

Reduction in HIV-negative partners: safer sex interventions with a disclosure component

 

X

 

 

 

Satisfaction/Acceptability

 

X

 

 

 

Usefulness

 

 

X

 

 

Disclosure confidence

 

X

 

 

 

Mental health outcomes

 

X

 

 

 

Communication skills and disclosure strategies

 

X

 

 

 

What does this mean for disclosure programs in Canada?

The factors that lead to a person’s decision to disclose their HIV-positive status to family, friends and sexual partners are complex and inter-related. Providing people living with HIV the skills to make these decisions and to disclose their status is key to improving their quality of life. 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.

Overall, the evidence is mixed on disclosure interventions—both stand-alone disclosure interventions and safer sex interventions—developed to help people living with HIV disclose to sex partners. The significant variation among interventions means that broad conclusions about the effectiveness of disclosure programs on disclosure to sex partners cannot be made.

However, some trends across interventions designed to increase disclosure to sex partners were observed. Most group-level interventions did not have a significant effect on disclosure rates to sex partners. Individual-level interventions, including the use of videos and repeat counselling, did show some significant effect.

The evidence is also mixed about the effectiveness of interventions on disclosures to family and children. Both interventions that studied parental disclosure to children found that disclosure rates were higher among parents in the intervention arm of the study, although only one of those results was statistically significant. An intervention for MSM that supported them to disclose to family increased disclosure rates, the increase was not significant.

Although the evidence related to disclosure outcomes is mixed, the evidence suggests that safer sex interventions with a disclosure component are effective at reducing unprotected sex in a variety of populations of people living with HIV, including MSM and youth. There is also evidence that these types of interventions help participants reduce their overall number of HIV-negative sex partners.

Finally, both stand-alone disclosure interventions and safer sex interventions with a disclosure component are acceptable and useful to participants. There is evidence to suggest that both stand-alone disclosure interventions and safer sex interventions with disclosure components increase confidence to disclose and improve communication around disclosure. The research also shows that stand-alone disclosure interventions positively impact mental health.

Despite the mixed success of disclosure interventions, two strategies may have positive outcomes on disclosure. First, ongoing support may be critical in increasing disclosure rates. One study42 found that people who are counselled more than once are more likely to disclose than those who received counselling once or never received counselling. Second, regardless of whether interventions increase disclosure, participants may find that interventions help them discuss, think about and role-play disclosure within the group, which over time may increase disclosures.29,34

Future messages and programs may want to address issues of disclosure more broadly. Most of the studies in this review were conducted before both HIV treatment for people living with HIV and pre-exposure prophylaxis (PrEP) were shown to reduce the risk of HIV transmission by more than 90%. These highly effective HIV prevention strategies complicate disclosure messaging and interventions.

New disclosure interventions should consider encouraging people living with HIV not only to disclose their status but also their viral load. New interventions may also include safer sex messaging that encourages people to disclose the results—negative or positive—of recent STI tests, as STIs can facilitate the transmission of HIV. Finally, future disclosure interventions may also include support for HIV-negative people on PrEP to disclose their use of PrEP with potential sex partners.

Methodology

This review is based on a search that included the use of PubMed, Embase, CINAHL, and PsycINFO. MeSH search terms included truth disclosure; self disclosure; HIV infections; intervention studies; and program evaluation. Embase subject headings included self disclosure; interpersonal communication; and human immunodeficiency virus. CINAHL subject headings included truth disclosure; self disclosure; HIV-infected patients; and HIV seropositivity. PsycINFO subject headings included self disclosure.

Keyword search terms included disclosure, intervention, and HIV. The reference lists of relevant articles were reviewed for additional citations. All searches focused on research relevant to health care delivery in Canada.

Google, clinicaltrials.gov, conference abstracts from the International AIDS Conference (2006-2014) and the Canadian Association of HIV Research conference (2009-2014), and the websites of selected, relevant community-based organizations in Canada were also searched for additional examples of disclosure interventions. Keyword search terms included disclosure, program, intervention, guide, and best practice.

 

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About the author(s)

Logan Broeckaert holds a Master’s degree in History and is currently a researcher/writer at CATIE. Before joining CATIE, Logan worked on provincial and national research and knowledge exchange projects for the Canadian AIDS Society and the Ontario Public Health Association.

Laurel Challacombe holds a Masters degree in Epidemiology and is currently Associate Director, Research/Evaluation and Prevention Science at CATIE. Laurel has worked in the field of HIV for more than 10 years and has held various positions in both provincial and regional organizations, working in research and knowledge transfer and exchange.