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Guidance on Couples HIV Testing and Counselling Including Antiretroviral Therapy for Treatment and Prevention in Serodiscordant Couples: Recommendations for a Public Health Approach. Geneva: World Health Organization; 2012 Apr.

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Guidance on Couples HIV Testing and Counselling Including Antiretroviral Therapy for Treatment and Prevention in Serodiscordant Couples: Recommendations for a Public Health Approach.

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ANNEX 9Community Voices

Background paper for WHO consultation on HIV testing and counselling for couples and partners

Mary Henderson

March 2011

1. INTRODUCTION

If universal access to HIV treatment and care is to be achieved, it is critical to scale up HIV testing and counselling to increase access to appropriate interventions and supportive services. To date, HIV testing and counselling (HTC) has largely focused on individuals. However, HIV transmission occurs frequently within stable relationships, including married couples. Up to 50% of people with HIV who have a partner are in a serodiscordant relationship, and women are as likely as men to be the HIV-positive partner in these couples. Many men and women in stable relationships are unaware of their partner's HIV status, and many people with an HIV-positive partner are unaware of their own status.

In order to address this unmet need, WHO has been requested by countries to develop guidance on HTC for couples (CHTC) in low-income and middle-income countries with generalized epidemics.

The WHO guidance on CHTC will be designed to meet the needs of government, policy makers, donors, non-governmental organizations, HIV programme managers, health care providers, patient support groups and HIV advocates supporting CHTC. A systematic review of the evidence on the effectiveness, benefits and cautions of CHTC will be undertaken to inform recommendations and as a basis for guidance on CHTC.

The individual needs and challenges of the people whose lives will ultimately be affected by this guidance are best understood by those who have actually felt those needs and are meeting those challenges. Through this paper, their inputs provide a personal dimension to the work of the experts participating in the technical review for the preparation of the guidance on CHTC.

From December 2010-January 2011, a qualitative survey was conducted to collect the personal experiences and perspectives of HIV activists and members of civil society who have had HTC – 24 of 25 of whom are living with HIV or are in serodiscordant relationships – in sub-Saharan Africa, Asia, Europe, Latin America and North America. This report documents the main issues discussed with those key informants, and it will contribute to the systematic review to inform recommendations and to prepare guidance on HTC for couples.

Pertinent issues and key considerations are presented in Section 4 and a summary table of main issues, themes, key informant perspectives and implications for consideration in the development of recommendations is presented in Section 5.

Several of the respondents, while acknowledging that some efforts have been made, expressed a concern that WHO has not done enough in the past to include, in a significant way, the views of people living with HIV and AIDS in the development of guidance relating to the broad range of issues affecting them, their families and their communities, and they welcomed the opportunity to be part of this effort. This report seeks to amplify those voices for consideration during the guidance development process.

2. METHODS

A qualitative study was conducted to ensure that the experiences of people living with HIV or who are partners in serodiscordant relationships are considered along with the technical review of evidence that will form the basis of guidance on HTC for couples.

An independent consultant was engaged to conduct the survey to ensure impartiality in the discussions with respondents and analysis of findings. Twenty-eight people were identified through international organizations and NGO networks and asked to participate in anonymous, semi-structured interviews regarding their personal experiences and views on HTC, disclosure, treatment for prevention and HTC for couples. Twenty-five people (ages 25–55) agreed to be interviewed. Twenty interviews were conducted individually by phone or Skype, and in one case with a couple that requested to be interviewed together. Four interviews were conducted in person by local programme staff of an NGO working with the respondents due to scheduling constraints, and one respondent provided written inputs. All participants had HIV testing and counselling and are currently involved in programmes addressing a range of issues around HIV prevention, testing and counselling, treatment access, stigma and discrimination, conception rights for people living with HIV and AIDS and gender-based violence. Thirteen of the respondents are from countries with generalized epidemics; 12 respondents have knowledge and understanding of the context and issues facing communities with generalized epidemics and were therefore able to offer relevant and meaningful perspectives on HTC, mutual disclosure and ART for prevention in serodiscordant couples, regardless of their country of origin.

An interview guide was developed to guide and ensure uniformity of interviews, to identify emerging themes and to facilitate analysis of findings. Twenty-three interviews were conducted in English and two were conducted in French. All interviews were 1–2 hours in length (representing approximately 38 hours of discussion) and most questions were open-ended to allow for free discussion of individual experiences, motivations, perspectives and concerns. Interviews were not recorded, but extensive notes were taken in order to ensure that respondents' inputs were accurately reflected in the report. The consultant's qualitative analysis of the discussions shapes the narrative sections and key considerations of the report, and the implications section of the summary table. These are intended for consideration in the formulation of recommendations on HTC for couples.

Verbal consent to be interviewed was obtained from all participants, and participants were free to seek clarifications of any points and to decline to answer any questions or to discuss any topics. Key issues, themes, perspectives and implications are presented in a summary table in Section 5.

Main topics of the interviews included:

  • Testing experience
  • Disclosure
  • Treatment for prevention
  • HTC for couples

3. KEY RESPONDENT PROFILES

Table 1Respondent profile by gender and nationality

AfricaAsiaEuropeL. AmericaN. America
Women81215
Men512----

Twenty-one of 25 key respondents are living with HIV. Three of the 4 HIV-negative respondents are partners in serodiscordant couples. Two respondents are partners in same-sex couples, one serodiscordant and one seroconcordant.

Table 2Respondent profile by gender, relationship type and HIV status

Concordant - negativeConcordant - positiveDiscordant - negativeDiscordant - positiveSingle - negativeSingle - positive
Women--427--4
Men1212--2

4. FINDINGS

4.1. Testing experiences

“It was horrible … I had to insist on receiving a test … 10 days later he told me I was HIV-positive but he knew nothing, and he said I'd likely be dead in 5 years.”

Twenty-one of 25 respondents took their first HIV test 10-25 years ago years ago when antiretroviral drugs (ARVs) were neither widely available nor affordable in many places; two respondents took their first tests in the past 10 years and two respondents did not report the date of their first tests. While 6 individuals recalled very supportive HTC experiences (4 in South Africa and 2 in UK), most respondents received results abruptly, and counselling – considered a critical component of HIV testing and counselling services – was generally provided in a minimal and inconsistent way; respondents were often left on their own to explore options for care and supportive services.

“It was a horrible experience, the counsellor did not tell me very much, it was as if she was interviewing me, reading off the paper and not looking at me. There was no personal connection between myself and her, and I didn't feel reassured when she told me I was positive.”

Advice on disclosure was not offered to any of the respondents, apart from a recommendation that clients share their test results with previous sexual partners only, although a few counsellors suggested that it might be easier to cope with the diagnosis if the individual had someone to speak with; conception counselling was never offered apart from the recommendation to avoid pregnancy altogether. However, PMTCT programmes were established in most places where respondents were tested and counselled, and pregnant women were enrolled in those when available. One respondent was told that she would eventually have to disclose, but she was offered no advice on how to do this, and she did not feel ready at that time. Consistent condom use was the only option recommended for preventing transmission to current and future partners.

The reasons given for having first taken an HIV test (voluntarily or not) included:

  • Suspicion of exposure (8)
  • Clinic protocol as part of routine blood tests for chronic condition, health-seeking behaviour with new sexual partners or other minor health concerns (6)
  • ANC visit for pregnancy test or antenatal care (4)
  • Illness (4)
  • Requirement for a job application (1)
  • Application for life insurance (1)
  • Personal interest (1)

Five of the respondents who sought HIV testing services were initially discouraged from – or refused – testing by providers who insisted that they did not fit a high-risk profile. All of their eventual diagnoses were HIV-positive. Respondents often reported feeling disappointed by the low level of knowledge or sensitivity demonstrated by providers at public and private facilities. All respondents mentioned counselling as the key determinant – along with self-awareness and self-advocacy – of supportive environments for people living with HIV. Given the concerns about the risks of delivering HTC for couples, this will need to be a major focus of the preparation and capacity-building for providers of these services.

Box 1Key considerations for HIV testing and counselling

KEY CONSIDERATIONS - HTC

  1. The acceptability and effectiveness of HTC for couples will hinge on the capacity of counsellors to provide services with sensitivity and skill. Couples must feel that they are engaging in a process on equal footing and that their needs for information and support will be satisfied.
  2. The offer of HTC for couples should be preceded by careful assessment of the particular needs and challenges of a community, as well as local service-delivery models, so that services are relevant and acceptable. It may be useful to consider finding ways to include peers in the staffing of these services, people living with HIV and in serodiscordant relationships themselves.

4.2. Disclosure

“HIV becomes more ‘human’ when people can see someone living openly, positively and productively.”

“You have to re-create your world.”

One respondent outlined the main goals of disclosure:

  • Self-knowledge and acceptance
  • Providers can make informed assessments and offer realistic and effective options on health issues
  • Spiritual and emotional support – can have a huge impact on health, immune system, coping capacity etc.

All respondents echoed these themes. The issue of disclosure was explored in terms of the advice received from providers and the decisions respondents have made around when, how and to whom to disclose their HIV status. Questions also addressed their perspectives on the impact of disclosure on a range of decisions around medical care, conception, parenting and prevention.

In general, respondents felt that disclosure is a liberating and empowering process, but that it is not something that should be imposed on anyone for any reason. A highly personal decision, all respondents felt that disclosure of one's HIV status should only take place when a person feels ready and safe to do this, and on their own terms. One respondent noted that the skills and capacity to disclose are different for everyone; this will have to be taken into consideration by providers of HTC for couples.

“A lot of what people say about disclosure [in terms of positive aspects] is unrealistic – it can be a massive can of worms, and it is very tricky.”

None of the respondents received substantive, supportive advice regarding disclosure at the time of receiving a positive test result; instead several were advised not to share the information with anyone except sexual partners, 2 people were simply asked if they intended to disclose and to whom, and 3 people were told only that disclosing would make it easier to cope with the positive diagnosis. In one case (in 1987), the provider's advice not to disclose was based on a genuine concern for his client: “People are so misinformed and judgmental that you might experience unnecessary rejection.” In some cases, providers asked for names of former partners. No one reported sharing this information, but 9 respondents volunteered that they had contacted former partners to urge them to get tested.

“Everyone has to disclose to at least one person, even if that person is yourself.”

One respondent suggested that denial of one's own HIV status can have devastating results such as self-imposed alienation from and inability to care about others, as well as extreme fear and isolation.

While all respondents agreed that disclosure facilitates a range of supportive relationships with loved ones and health service providers, there is concern about misuse of the information in workplaces, health care delivery settings and social situations. Parents are particularly cautious about how their HIV status, or that of their child, can affect a child's sense of security at home and in school, and their confidence with their peers. In one country where ARVs are free, a respondent noted her belief that many people in marginalized groups (whose practices are sometimes criminalized) may find ways to obtain medications and begin treatment without getting tested as they fear the scrutiny and judgment they encounter with HIV test providers. The respondent believes this fear of testing may contribute to a growing epidemic because the needs and concerns of the most marginalized are being ignored.

4.2.1. Disclosure to loved ones

“Disclosure is not an event, it's a process.”

Several respondents noted that family and friends were the most important starting points for disclosure, with one caveat: Be prepared. They emphasized the importance of being able to answer loved ones' questions and to reassure them about the prospects for living a long, healthy and productive life with HIV. For some respondents, it took years to be able to disclose to family or friends. Four respondents reported disclosing to all family and friends soon after receiving their test results, while 17 people described a more gradual process over a period of several years.

HIV-positive respondents all reported that disclosure to existing partners was done immediately or soon after receiving their test results, and, with the exception of one person who waited a year to disclose to a new partner, they disclosed to new partners as they were starting relationships. Eight respondents reported that they sometimes found it difficult to maintain new relationships as their partners or the partners' families were uneasy about the risks of transmission or the general idea of their loved one being involved in a relationship with an HIV-positive person. All three of the HIV-negative respondents in serodiscordant relationships knew about their partner's status well before they entered into the relationship, and so disclosure was not a major issue for them. This was also true for one HIV-positive respondent who is in a serodiscordant relationship with a colleague from the HIV field. One woman noted that she and her partner talked a lot about HIV and disclosure at the start of their relationship, but with time it became a less prominent issue in their lives. She did note that they took extreme care based on all available information when they decided to start a family, and that she felt that it is important to be aware of HIV in the family when young children are in the household so that standard precautions are practiced consistently.

As noted above, 8 respondents have faced challenges in maintaining relationships once they have disclosed their status to new partners, but none experienced the physical vulnerability of abandonment themselves. None of the 21 HIV-positive respondents reported experiencing any physical abuse or fear of abuse as a result of their disclosure to family, friends or partners.

It is also important to acknowledge that the fact of a supportive relationship does not mean that a couple will not encounter disagreements and differences of opinion related to living openly as a serodiscordant couple. One respondent described having to negotiate with her husband about how and when he could disclose her status to others as he had been doing this more freely than she felt was appropriate or necessary. Disclosure, even for people living openly with HIV, needs to be carefully managed and agreed by both partners in a relationship.

With regard to disclosure in the context of HTC for couples, many respondents expressed concern about the stability of some couples and their capacity to absorb the news of a partner's HIV status; the need for well-skilled counsellors who can assess the couple's readiness for mutual disclosure will be critical to the effectiveness of HTC for couples. But the personal experience of all respondents who are involved in serodiscordant relationships underscores optimism about the prospects for beneficial outcomes of HTC for couples. One woman whose husband was HIV-positive and who later received her own positive diagnosis confirmed the possibility of mutual support that will be one of the goals of HTC for couples:

“I also told him that it doesn't matter who gave who what, that I would stick by him regardless. He said the same, and he's been supportive ever since.”

4.2.2. Impact of disclosure on health, family life and prevention

“You can disclose, but you have to believe it and act on it.”

Respondents were asked to comment on the impact of disclosure on health, informed decisions around having and raising children, and personal choices about HIV prevention. There was broad consensus that disclosure has a significant impact in all these areas, but that disclosure is a complex process that cannot be rushed or assumed to be immediately beneficial. In countries where judgmentalism and stigmatization are severe, and where some practices are criminalized or prohibited by religious norms, disclosure is still a significant challenge.

In many cases, disclosure to friends, family and health providers ensured that the individual could access the most appropriate care in a timely manner. However, there were also a few examples of discrimination and demeaning treatment by providers who still do not understand the needs and basic rights of people living with HIV, or by those who may allow their own personal views to interfere with their professional judgment or responsibilities. One respondent described her sense that some providers feel that patients ‘owe them something’ (e.g. they shouldn't be having children or even healthy sex lives), and so it can be difficult to disclose to a provider when you are worried about these kinds of reactions or expectations. Seven respondents mentioned this as a deterrent to seeking care; in some countries people who do not know their status will avoid testing and support services because of the reputation of insensitive and judgmental providers. In some cases where individual behaviours may be criminalized, fear of the authorities may also be a powerful deterrent to seeking services.

“Many people are not living with HIV, they are existing with HIV.”

Respondents all agree that mutual disclosure helps to create a supportive environment for adherence to treatment in terms of moral support, reminders about medication schedules and freedom from causing loved ones, especially children, unnecessary fear and anxiety. Eleven respondents talked about the very supportive role of their partners in reminding them about taking their medications; for most HIV-positive individuals interviewed, adherence to their medications can become a tedious and burdensome routine, even with the knowledge that the drugs are essential to their health maintenance. They also mentioned that side effects can be difficult to tolerate, and supportive partners help them to get through these difficult periods. One (HIV-negative) respondent's (HIV-positive) wife worried because of the danger to him, and so he routinely reminds her about taking her medications “so that she can relax a bit”. One woman reported that because she supported her husband from the start, they have came to terms with their concordant HIV-positive status, and they are mutually supportive – her husband usually alerts her on her mobile phone to remind her of the time to take her drugs:

“Even when he is out of the country, the beep always comes as a reminder.”

Disclosure to sexual and reproductive health providers ensures that serodiscordant couples can understand the options they have for conceiving, giving birth and feeding their child with minimal risk of infecting their partner or their baby. While many of the respondents are fully informed about these options because of their educational level and professional activities, they suggest that this is one of the important benefits to disclosure that all couples should fully understand and be supported to take advantage of. At the same time, as one respondent noted, counsellors must be sensitive to the pressure on women in some cultures to have children; this can drive some women ‘underground’ as they will be reluctant to disclose their status and risk losing the opportunity to have children. Disclosure is the entry-point to counselling, ensuring that a serodiscordant couple understands that conception and family life are very real possibilities as long as they know the different approaches and optimal conditions.

Respondents with young children pointed out the value of disclosure in dispelling their anxieties and fears when seeing parents constantly taking medications or being secretive about clinic visits.

“Kids know. They are so perceptive and they will only become more resentful the longer they feel that a parent is withholding important information.”

Prevention of HIV transmission is one of the most straightforward benefits of disclosure.

“People [living with HIV] in denial are the most afraid and the least careful.”

Knowing one's HIV status (i.e. disclosure to self), even when access to treatment was minimal at best, has for many years provided the basis for negotiation for safer sex. Disclosure is still a fundamental step in the process of acquiring the skills to advocate for one's health and well-being, to negotiate for protected sex with partners, and to ‘take ownership’ of one's HIV. At the same time, disclosure should happen only when an individual is ready, and on their own terms.

“If people took universal precautions and saw everyone as HIV-positive, then disclosure would not be such a big issue.”

In some countries, women's sense of empowerment through disclosure may be undermined by male gender-based vulnerability rooted in cultural norms that require men to demonstrate courage and virility (and the ability to produce children) and make them reluctant to have protected sex. In these situations, women will need additional support for negotiation of protected sex through intensive public information campaigns including carefully targeted messages for men.

Box 2Key considerations for mutual disclosure

KEY CONSIDERATIONS – MUTUAL DISCLOSURE

  1. Disclosure is a complex process that can only be undertaken when a person feels safe and ready. The fear of losing one's home, spouse, children and job are still acute, even in countries where the HIV epidemic is generalized and awareness is high. Mutual disclosure may be an anxious prospect for couples, but evidence from this work suggests that there is a great deal to be gained from mutual disclosure. Planning for the involvement of peer mentors in the HTC intervention for couples will provide reassurance and role models to couples who feel insecure about the process and its implications for their lives.
  2. The groundwork must be laid in a community before couples will be comfortable agreeing to testing and counselling together. Flexibility on the part of service providers to meet the particular needs of couples will be essential, and the involvement of peers in this stage may make the experience more relevant and reassuring.
  3. The skills and capacity to disclose are different for everyone.

4.3. Treatment for prevention

4.3.1. Swiss Statement

Respondents were divided fairly equally on the issue of ceasing condom use when:

  • The HIV-positive individual complies with the anti-retroviral therapy (ART), the effects of which must be evaluated regularly by the treating physician;
  • The viral load (VL) has been non-detectable since at least six months (i.e. viremia is suppressed);
  • There are no additional sexually transmitted diseases (STD) present.2

According to the Swiss Statement, an HIV-positive person cannot transmit the virus when those three conditions are met.

“Who wouldn't want sex without a condom? But protecting the negative partner is more important.”

In some cases, respondents feel that the minimal risk is worth taking to restore a ‘normal’ sex life with their partner, enjoying unprotected sex and relatively little anxiety about possible infection. Others, mostly parents of young children or couples wishing to start a family or have another child, feel that it is not worth the risk at this time. Three respondents reported currently having unprotected sexual relations based on the findings of the study that informed the Swiss Statement. Six respondents expressed the view that it is unwise to use this evidence to cease condom use because, in the words of one woman, “… suppression doesn't cure HIV”. One respondent emphasized the greater risk to the HIV-negative woman and suggested that condoms should always be used unless microbicides were available to the woman. One respondent noted the potential for misuse if this new information is used in prevention messages – he felt the information should not be stated so definitively. He sees the research as a powerful tool to advocate for universal access, but he is concerned that the advice is being used to an extent that it should not be until there is further evidence, especially regarding anal intercourse. One respondent speculated that there might be pressure from drug companies to promote this approach to prevention.

Twenty-two respondents stated that the decision to stop using condoms must be a personal choice based on a careful review of the evidence and consistent clinical support for monitoring viral load, presence of STI, and overall health status of both partners. No one would actively recommend this to another couple: it is considered a very personal decision and must be preserved as such.

One respondent felt strongly that the deep sense of responsibility and burden for the HIV-positive person (to prevent transmission) – and the potential for self-imposed guilt – should not be dismissed. He expressed concern that an emphasis on the bio-medical aspects of an intervention can minimize the importance of the emotional and social well-being of the HIV-positive person. There is often some dread involved in the possibility of transmitting the virus to another person; cessation of condom use is not an easy choice, and this must be understood and acknowledged by counsellors discussing this option with clients.

In general, almost all respondents expressed optimism that research was indicating the reduction of transmission through treatment, and they hope that the body of evidence will become more substantial and definitive.

4.3.2. Ceasing condom use for conception

“People [living with HIV] are so afraid to say: I want to have a kid.”

All respondents were supportive of this approach if done in a knowledgeable way (monitoring the woman's fertility cycle, viral load of the positive partner, etc) and under clinical supervision if needed. Counsellors also need to be sensitive to the fear that HIV-positive people will have of infecting their partner. Some people noted that there are other approaches such as sperm washing for HIV-positive men and the ‘baster method’ for HIV-positive women, but these approaches are either not available or affordable for most people in the case of the former, or impractical or less desirable in the latter.

4.3.3. Consistent use of condoms regardless of viral load

There was consensus among respondents that consistent condom use remains the most risk-free approach to preventing transmission to an HIV-negative partner. Prevention of pregnancy as well as STIs are noted as added values of consistent condom use. But condoms are still problematic in certain cultures, and women often face extreme resistance by their partners.

“This is a personal choice – if they're not bothered by condoms, then why not?”

4.3.4. Early treatment

New research demonstrating the value of early treatment in preventing transmission to HIV-negative partners in stable serodiscordant relationships has sparked optimism in the PLHA community about having another option for protecting HIV-negative partners. But strong concerns were expressed regarding:

  • Limited resources in some countries still do not ensure that all who need ARVs have access to them
  • Additional pressure on health systems in terms of human and financial resources
  • Potential for HIV-positive partner to be pressured by the HIV-negative partner to start treatment
  • Reluctance on the part of many people to start treatment before absolutely necessary – issues of toxicity, resistance and the rigours of adherence
  • Potential for some people to start treatment early without fully understanding the implications or the risks.

Four of 21 HIV-positive respondents had started treatment early, and one person felt that he might have benefited from earlier treatment; most of the other 17 expressed reservations and feel that it is ultimately a personal choice. One respondent's experience in a country where stigma and discrimination are still very severe commented that since testing is unpopular, most people will only seek treatment when their CD4 count is very low and they are already very ill. Another person who is living openly with HIV stated that she would never start treatment early because “the long-term effects of ARVs are scary and we don't yet fully understand the long-term implications” of starting treatment early. Yet another view is that if a person is in a situation where it is difficult to negotiate for protected sex, there might be a strong case for early treatment, but only if the HIV-positive partner can make that decision of their own free will.

Box 3Key considerations for treatment for prevention

KEY CONSIDERATIONS – TREATMENT FOR PREVENTION

  1. There is a feeling of optimism that new possibilities are emerging for HIV-positive people to live with less anxiety about infecting negative partners, and with more hope for healthy conception and childbirth options. Providers of HTC for couples must be well-informed about all of the options involving treatment for prevention so that couples can understand the implications and be free to make fully informed choices about these fundamental aspects of their lives.
  2. At the same time, care must be taken to ensure that no one is pressured to take an approach to HIV prevention that they are not comfortable with. These are personal and joint decisions.

4.4. HTC for couples

“Everyone needs a shot at building a loving, supportive and healthy serodiscordant relationship.”

In general, most respondents felt that the concept of providing options for couples to test and participate in counselling together is a good idea, but that there is a risk of doing more harm than good if good guidance is not available. They point out that providers are currently trained to provide counselling to individuals; HTC for couples will require a different type of training and clear guidance for providers.

“Almost 50% of the time, only one person in a couple is HIV-positive. The relationship needs to be really solid to withstand the knowledge about a partner's status and the provider needs to be able to ensure that both people fully understand the causes and consequences of infection.”

Three respondents felt that testing should remain a private activity, and that it's important to preserve the option of privacy in the counselling session as well. A joint session might be offered following the opportunity to learn one's test result and to discuss privately with a provider. Another respondent felt that testing alone can leave a person feeling vulnerable and anxious.

One respondent was unambiguously opposed to the offer of HTC for couples at this time, primarily because of the lack of guidance and the existence of too many unknowns. However, this person also feels that couples counselling might be very useful in cases where both partners are already aware of the other's status; she is most concerned about the prospect of mutual disclosure and the implications for women in unstable relationships.

One respondent noted the importance of trust for a couple agreeing to test and be counselled together. As there is no ‘test’ for trust, it will be critical for counsellors to be able to make this assessment prior to initiating the testing process. Part of this assessment would entail identification of the more vulnerable partner in order to ensure that there is equality in decision-making and protective services available if needed. This implies the possibility of a prolonged process for pre-test counselling, requiring a heavy investment of time and resources. This respondent also felt that in the best of circumstances – with proper counselling and a foundation of trust between the couple – CHTC could be a profoundly supportive and empowering process.

If a couple is stable, or considering entering into a relationship, respondents believed that HTC for couples will be the best way for them to get the same information and the same understanding about the implications of testing, the possibility of a positive diagnosis and the strategies for living healthy, productive and long lives. For example, respondents speculate that there will be less chance of dispute or misunderstanding around safer sex practices if the couple are counselled on this together. For many younger couples, this model for HTC can create an excellent opportunity for discussing conception and the fears and misunderstandings that people have about their prospects for establishing a family while living with HIV.

A common view – though possibly a misperception based on anecdotal reporting – is that ‘women tend to stay with their men even when they learn he is HIV-positive, while the opposite is generally not the case’. These are deeply-held perceptions and reflect engrained cultural issues that may be difficult to address through HTC for couples only; a community-based approach involving an orientation process may help to address some of these issues and to shine a light on the real situation concerning stable relationships in the community.

4.4.1. Mutual disclosure

“We can't imagine having to hide this – the person living with HIV is often terrified of infecting their partner – a type of self-stigma.”

Most respondents felt that mutual disclosure has the potential to be a powerfully supportive approach to living with HIV in a serodiscordant or seroconcordant relationship. Eight respondents who have participated in couples counselling (only three of whom tested together) emphatically listed the benefits of their experiences:

  • Sense of shared purpose for staying healthy and raising children
  • Support to HIV-positive partner/s for adherence to treatment
  • Greater understanding on the part of the HIV-negative partner about transmission prevention strategies; negotiation of protected sex is easier, especially in cultures where condoms are unpopular
  • Hearing the same information from the same provider and being able to understand how to take care of themselves
  • Opportunity to forge the dynamic of sharing risks and decisions

In the words of one peer mentor who emphatically views HTC for couples as the most realistic strategy for prevention and living openly with HIV:

“If we tell them the life we have spent living with HIV they are amazed. When we mention that we have HIV-negative babies, they are amazed because they believe HIV is a death sentence.”

One respondent noted that often women are tested and diagnosed during pregnancy which is already a stressful time; if there was a way to get the information they need while including their partner in the discussion, this could provide a great relief to these women along with the related health benefits of reduced stress for herself and her baby. In this case, however, counselling the woman alone first might be the better option, with the partner coming in after the woman has had a chance to process the information and her situation.

4.4.2. Counselling

“The counselling is the most important part of this – both before and after testing. Not enough time is [currently] being allocated to counselling.”

More than the uncertainties and challenges around mutual disclosure, all respondents highlighted counselling as the component of this work that would require the most careful preparation and investment. There was general concern among respondents that counselling is not adequate to meet current needs – in numbers or in quality; an intensive effort will be needed to train and maintain, mentor and supervise the health workforce required to support this scaling up of more specialized testing and counselling services. Counselling for HTC for couples should ideally be provided by peers or accompanied by peer counselling, mentoring or support.

4.4.3. Cautions

The hallmark of HTC for couples is mutual disclosure; it is also the main source of the concern expressed by respondents. While 7 of the people interviewed reported having experienced rejection and emotional disappointment as a result of their decision to disclose, none of them experienced violence or destitution. They emphasized several conditions that must be in place to ensure that women in positions of financial, physical or emotional vulnerability can be assured of a safe environment for themselves and their children after they have participated in CHTC:

  • Adequate numbers of counselling staff to meet the different needs of each couple
  • Trained counsellors capable of assessing a couple's readiness for mutual disclosure
  • Trained and knowledgeable counsellors capable of sensitivity and possessing good communication skills
  • Adequate time allocated to counselling sessions
  • Available and accessible supportive services
  • Available and accessible legal and protective services
  • Follow-up support

One respondent also talked about the risk that HTC for couples positions HIV as a big part of being a serodiscordant couple, and he feels that this should be avoided. There may be a need for ‘deprogramming’ either as part of counselling or follow-up support, so that the couple is not constantly thinking about this as their only point of reference or sense of identity.

“People need to understand very well what it means to be a seroconcordant or serodiscordant couple so that they can move forward with their lives [in a confident and informed way].”

Most respondents feel that many of the concerns they have about HTC for couples may be minimized by good counselling in terms of provider sensitivity, expertise and flexibility, and content of the counselling sessions.

Box 4Key considerations for HTC for couples

KEY CONSIDERATIONS – HTC FOR COUPLES

  1. This approach should not be mandatory. It might be introduced as one of several options for all couples seeking ANC, SRH or other related services.
  2. A phased approach may be necessary to ensure that a situation analysis (existing health system and infrastructure, counselling services and workforce analysis, opportunities and challenges, resources) is completed before services are designed for each specific community.
  3. A phase of community orientation through public information campaigns and community-based learning strategies (eg Stepping Stones Plus) may help to set the stage for a new initiative that requires equal participation of men and women in settings where this is not well understood or accepted.
  4. Investments in counselling will need to feature prominently in programme budgets and resources must be identified to ensure comprehensive and sustainable interventions.
  5. Monitoring, evaluation and documentation of results must be included in programme planning activities.

5. CONCLUSION

Twenty-five individuals shared very personal experiences, intimate reflections and deeply felt views and concerns for the purposes of this survey. To varying degrees, they conveyed the feeling that the emergence of new options for increasing access to testing, counselling and treatment is cause for optimism and should be explored as long as full information is available and individuals' rights to make personal choices are respected. While acknowledging that the evidence for the benefits of HTC for couples is neither substantial nor conclusive, there are nevertheless many reasons to explore this uncharted territory.

Carefully assessed and managed risks may reveal opportunities to serve the needs of couples and their families in a more humane and holistic way, “forging the dynamic of sharing risks and decisions” that affect the stability and health of serodiscordant couples and the well-being of their families.

6. COMMUNITY VOICES

The following table lays out the main issues discussed in the semi-structured interviews, the themes discussed pertaining to each issue area, the perspectives of the 23 respondents (condensed in cases of repetition) and the implications of those perspectives that may be considered as recommendations on HTC for couples are developed.

Table 3Summary of respondents' experience and views on disclosure, treatment for prevention and HTC for couples

IssuesThemesPerspectivesImplications
DisclosureSelf-awarenessDisclosure can be very liberating, but it takes time to understand the implications and to feel ready to do this. This took 6 years for her.

You can be better informed about what's happening in terms of your own disease, health status and new developments.

You can't be blackmailed.

Important for those who love you and help your life to function hear this news from you directly.

“If you don't disclose to yourself. You can be transmitting [the virus] without knowing it.”

Disclosure is important, but more important is the ability to negotiate (endlessly) for protected sex [when your partner doesn't like condoms], for your own well-being and peace of mind [regarding risks to HIV-negative partner] and for the health and well-being of future children, and for the stability of the relationship itself. Couples will need support for this as well as for disclosure.

“Many people were not ‘living’ with HIV, they were ‘existing’ with HIV.”

Everyone deserves the opportunity to learn to live with being HIV-positive without being judged.
Couple needs to be ready to disclose before embarking on testing and counselling together – counsellors will need to be trained not only to guide clients through the process but also to be able to determine when a couple might not be ready to disclose to each other.

Counsellors need to have complete, technically accurate and easily understandable information in order to answer any questions or provide appropriate referrals.
Supportive environmentContributes to peace of mind; relieves anxiety about whether or not you will be loved and accepted; establishes a network of supportive friends, family and health care providers.

Never expect 100% acceptance; as you gain confidence, the non-acceptance will diminish.

One woman who tested and counselled with her husband noted that mutual disclosure made her feel that she had to stay and support her husband after realizing that they shared the same fate; now they plan for their children's future together.

Gives others the courage to disclose, contributing to normalization and acceptance.

“When the HIV-positive person feels secure and can talk about him/herself in a very open way, not looking for pity, it usually triggers the best side of others…must be done in a small, controlled environment.”
Participating in the process together can help a couple to place the emphasis on their shared responsibilities to each other and to their children.

Mutual disclosure may relieve the pressure on the couple to disclose before they are ready. If the financial and emotional support is intact between the couple, there are many important decisions that can be taken without disclosure to the wider community, if this is what the couple prefers.
Stigma and discrimination“People will accept you to the extent that you accept yourself.”

Access to ARVs hasn't changed stigma – we need to reinvigorate the work against stigma though policymaking and the type of language we use.

In some countries, especially where a concentrated epidemic creates sharp divisions between high and low risk groups, there is still massive discrimination and there is a risk that people in these countries will not go for testing because they simply do not want to know.

“In some ways, availability and access to treatment has intensified stigma – when people felt they had nothing to lose, they stood up and fought. Now it's easier to hide one's status, and so we've lost some ground.”

There are SOPs for HTC that address stigma and discrimination on paper, but they are not always translated into practice.

People will stigmatize those who are less empowered, which represents an additional burden to the person with HIV.
Providers need to be sure that couple can disclose in a safe environment; referrals for protective and legal services may be required.

Providers need to be accountable for professional standards and behaviour which minimize stigma and discrimination in health service delivery settings.

Strategies for empowerment and confidence-building must be part of CHTC interventions – individuals must learn ‘ownership’ of their HIV.
Impact on health, childbearing and preventionDisclosure should be linked to practicing standard precautions in the household, especially where young children are present.

Easier to seek treatment and to adhere to treatment when you are not fearful of others finding out; partners especially can play a powerful role in adherence, reminding about taking meds as well as offering comfort and moral support for coping with difficult side effects.

Conception options need to be discussed openly with providers and clinical monitoring available to ensure minimal risk.

In African context, can't use condoms (or very difficult to use condoms) if you haven't disclosed.

Negotiation of protected sex easier when one's HIV status is known by one's partner.

People, especially women, are less willing to take risks or to gamble with their health when they have a child dependant on them; this suggests that disclosure becomes more important as it facilitates parents getting appropriate services to support their health and survival.

You will disclose once but have sex many time…negotiating protected sex, contraception and clinically supervised conception is a bigger challenge for women.

Disclosure implies ‘acceptance’, and that will definitely impact health – if a person is in denial, adherence to treatment will be adversely affected.

In some cultures, the stigma of not having children (or thinking this is not possible) is worse than the stigma of the virus itself.

Disclosure is important, but more important is the ability to negotiate (sometimes endlessly) for protected sex, for your own well-being and the well-being of future children – this is not as easy as some people might think and couples will need support for this along with disclosure; and couples need to hear about this from couples living with HIV themselves.
Counselling needs to be sensitive and comprehensive, and it must include appropriate referrals to high quality services.

Peer counselling, support and mentoring are essential.
Treatment for preventionCondomsCouples need to have a comprehensive understanding of the options to continue or cease condom usage – ultimately a personal choice as long as all conditions and risks are understood.

Swiss Statement offers a new freedom to serodiscordant couples who want to consider having unprotected sex. Must be understood that the risk is never zero, but informed choice is paramount.

While the risks may be minimal, some people less willing to take even minimal risks of becoming infected – ceasing condom use must be a joint decision and both partners must be in full agreement.

Men are more eager to not use condoms than women are for men not to use them.

In some counties, e.g. Bolivia, condoms are highly unpopular/unacceptable and women who live openly with HIV face a daily struggle to insist on protected sex.

Condoms are important for many reasons – protection from STI and contraception, so consistent use of condoms recommended by all respondents.

If a couple does not intend to conceive, there is no reason to not use condoms.

Counsellors must recognize the dread and guilt that is felt by HIV-positive people regarding the possibility of transmission of the virus to a partner.

There is a need to address emotional and social aspects of a decision not to use condoms, not just the bio-medical aspects.
Skilled counselling required including verification that couples fully understand information and risks of not using condoms when HIV-positive partner is on medication, VL is undetectable and neither partner has an STI.

In the guidance, WHO should state clearly that there is a residual risk and doctors and counsellors need to have accurate knowledge to be able to advise responsibly on this.

Counsellors must understand and acknowledge the fear felt by the positive partner of transmission to the negative partner. They must understand how difficult the choice is, and the possible need for a couple to require repeat counselling for additional support.

People are not faithful, and so the conclusions of the Swiss Statement need to be worded in a different way in the counselling guidance so that there can be no misunderstanding or potential for misuse, e.g. the risk becomes lower in certain specific cases…

More work on condom promotion still needed in some regions.
ConceptionCeasing condom usage for conception is one acceptable option for serodiscordant couples – clinical supervision is recommended and collection and injection (baster method) is also ok when the woman is HIV-positive. Another practice mentioned is putting a pinhole in a condom to minimize the exposure to vaginal fluids of HIV-positive woman.

Conception counselling is not well-developed in many countries, and so options are not well-understood.

Need to be aware of how much you're willing to tell people about trying to start a family because people can be very curious and not understand well; part of the process of telling people needs to be backed up with facts to alleviate fears and criticisms.

Not knowing how to conceive is another ‘self-stigma’ that can be avoided when you are open and can freely discuss with providers and counsellors.
All feasible options in a given community must be understood and explained by counsellor so that couples can make informed choices.

The types of counselling required for ongoing support to discordant couples may require more specific training.
Early treatmentWhile it seems like a good thing, may increase pressure on health systems at the same time that it strengthens individual health status and prevention of transmission to HIV-negative partners.

A personal decision – the decision to start treatment early is not taken lightly by most people living with HIV. There are issues of toxicity, resistance and the very considerable burden of taking medication on a regular and permanent basis.

There are concerns about cost (to the individual or to the health system), toxicity and individual tolerance.

An individual must have full information and be able to take ‘ownership’ decision to initiate early treatment.
This can only be a recommendation when the costs of additional treatment can be covered and not undermine other services.

Information on early treatment should be offered but in a non-pressuring way that allows couples to make a free and informed choice.
HTC for couplesGeneralIt is good for people to start the process together – it opens a ‘window of equality’ for discovering together.

The concept is great – need to have a social marketing campaign that spells out the mutual personal responsibilities of this model.

Prepares couple for any eventuality – we may see more families getting post-test support if they start out together with testing and counselling.

In Uganda, people are often encouraged not to disclose results but to bring partner in for counselling and support to help facilitate the disclosure.

Should not be mandatory but should be offered.

Would not support this in situations where one partner does not agree of feel comfortable – must be a joint decision. If both people don't agree, may raise a red flag about the relationship, and the counsellor must be sensitive to this.

Test result should not be delivered while partners are together in the room – the positive partner needs to be brought through the process and be able to ‘sell’ it to the negative partner.

Testing should be done individually; counselling can be the opportunity to give all the information necessary for the relationship to survive.

There is too little support for health care staff; attrition due to illness, death and burnout is high. In the case of HIV-positive health care staff, only 10% are considered likely to have contracted the virus in the workplace; access to SRH services and counselling must be strengthened included as part of an intervention that will require an increase in the numbers of trained health care staff. Furthermore, HIV-positive female health staff are terrified of being seen as being sympathetic with HIV-positive women clients; they do not offer the support they could if they themselves were more supported in the workplace.

There must be an enabling environment for policy development to support PLHA in all countries – e.g. criminalization of transmission to children, forced terminations and forced sterilizations must be eliminated.

The more that can be done in terms of preparation and awareness raising the better, before proposing the idea of testing jointly.

Peer support will be a key component of this process.

It must be possible to identify the more vulnerable person in the relationship in order to provide additional support as needed.

“It could be a can of worms, or it could be amazing.”
Might consider offering on ‘opt-in’ basis as a pilot initiative to determine optimal design, evidence of feasibility and to define possible risks more accurately.

Need to look at the robustness of support for HIV-positive health staff – their potential as supportive role models is considerable; guidelines needed for this.

Counsellors will need new skills for assessing a couple's readiness for the process and for prompt and effective referrals as needed, especially in cases where protective services are required.
WomenWomen have powerful protective instincts for their children, and that will determine their willingness to risk a safe environment for them, e.g. home and financial support of their partner.

HTC for couples might be a more humane option for perinatal testing; the woman will not be alone with the burden of her status and the decisions she then needs to make around PMTCT, infant feeding choices etc.
May be useful to consider ANC as the setting for initial phases; expansion once evidence basis more established.

Secondary benefit will be a pool of peer mentors who can support expansion to the broader community.
MenOne of the problems is that there has been an overload of information for women and children, and almost none for men – there has to be some phase of preparation for men to be able to go into CHTC with a similar level of knowledge. One of the ways to do this is to get men more involved in services currently focused in most countries on women – ANC, PMTCT and SRH services.

In general, men have been isolated and have not had the same opportunities to learn how to understand sensitive issues around gender equity, power relationships and negotiation in sexual relationships.

In some countries, men feel that HIV messages should only be targeting MSM; public information still a huge gap in some places.

In a place like South Africa, men will continue to think that HIV is a woman's disease, and it will not change until they receive more education and hear about it straight from the medical professional. By hearing [the correct information] from the counsellor, he cannot blame his partner.
Men must have the capacity to engage in this type of intervention; assumptions about men's readiness to participate may have a negative impact on outcomes.
CommunitiesIt may be more feasible to sensitize entire communities to the concept of HTC for couples rather than offering it to couples with no ‘advance warning’.

Men and women may access support in different places; need to first understand how health care is structured and delivered and then launch a community consultation and orientation in order to set the stage for provision of this as a new option.

Need to have avenues where men and women access health care in the same place if not together; in countries where this doesn't exist, not clear how this would work; needs to fit into the existing health system and infrastructure.
Needs assessments will be required in different types of communities to define how the health system is set up and how it serves men and women differently.
BenefitsSame information given by the same provider, while couple gains the same understanding of treatment options, protocols, follow-up support services.

Like HIV, HTC couple could open up issues of gender and health inequities for deeper examination – not likely to solve issues but would be a step in the right direction.

Issues raised in this context would go to the very core of a couple's way of life, and what brought them together – could have beneficial or detrimental effects.

Both people get the same information from the same provider at the same time – would help to avoid the ‘telephone game’ effect.

May be the best way to go to promote openness and mutual disclosure – we may see more families getting post-test support when they start out together getting testing and counselling.

Linking to other types of support including family services and anti-domestic violence services if necessary.

When you have a child, issues that were not issues become issues; counselling can help with this.

A starting point for forging the dynamic of sharing risks and decisions.

Can also be useful for highlighting the irrational fears that can grow about transmission, risks to family, etc.

Relieves the HIV-positive partner of the burden of disclosing to their partner.

Learning your status together with your partner and starting your ‘new life’ together, can strengthen the relationship.
Skilled counselling required.

In countries where childbearing is essential to the couple's sense of worth and identity in the community (many places), will be critical to make conception counselling one of the features of this approach.

Couples start out on a more equal footing and may decrease the risks of blame and violence – but couples should be carefully followed-up and monitored.
CautionsFunding issues – in some countries, access to medications is dependant on continuity and levels of GF coverage.

Some religious contexts will not allow this sort of interaction between men, women and health providers.

Potential for domestic violence, abandonment and psychological abuse is a serious issue.

Potential to defuse violent situations if counselling handled sensitively, skilfully and with a comprehensive understanding of the community where service is being offered.

May be a higher risk of GBV in conflict zones or other unstable settings.

There may be potential for a partner or provider to pressure or coerce someone into accepting HTC for couples – both partners must agree to participate and there should be no pressure from providers. Must be one option for couples, in addition to individual services in ANC settings or freestanding testing sites.

Needs to be linked to existing services such as VCT in a comprehensive way so that people can be offered an array of options.

One of the biggest problems is that there is a lot of support for women and kids, but men are still quite isolated – … the two partners have often not received the same information, and this can lead to problems. [There is sometime a] complete imbalance of information: overload for 1 group and almost nothing for the other group.

HIV-positive partner can feel stigmatized; counselling together may help the couple to address these perceptions or realities.

Testing during pregnancy must be done in a very supportive environment to avoid extreme stress and negative impacts on the health of the woman and the foetus.

The way that health staff treat clients can have an enormous influence on health-seeking behaviour of the public.

In places where women are considered property, a lot of care must be taken.

The danger is mostly in situations where the status changes after a first test together where both partners were negative – it then becomes an issue of fidelity and morality and not primarily [about the] HIV.

In Zimbabwe [and some other countries], the public is generally very informed about HIV and so they often understand issues like the window period etc…but a trained counsellor can tell if there may be more complex issues of blame and possible abuse or abandonment, in which case they can also request separate sessions with each person in order to allow partners to speak totally freely.

It is very difficult to know how healthy or unhealthy a couple's relationship is; if there is a chance that there will be abuse, providers must be very cautious. Some relationships are problematic already, and an HIV diagnosis – especially for the woman – can be an additional ‘excuse’ for trouble.
To be able to promote treatment for prevention for serodiscordant couples, must be able to guarantee lifetime supply of medications.

Consultations with religious leaders in some communities may be necessary; may not be feasible in some settings.

Counsellors must be highly trained to assess stability and potential for violence in a relationship.

Legal and social protective services must be available in cases where follow-up required.

May need to consider tapping into other sources for counsellors, eg INERELA+ members with counselling skills, peer educators (couples)

Orientation for men may need to be considered in some communities before HTC for couples is initiated.
CounsellingConsider carefully the structure of the counselling piece – start off with a group or couple session for general information, separate sessions to deal with difficult or sensitive topics, and then back together as a couple for testing and / or more counselling.

Counselling as currently structured and staffed (in Africa) is not adequate to deal with this new approach – will need to identify ways to resolve this, perhaps develop other ways to develop cadre of counsellors.

Need to place emphasis on training and capacity-building for a much larger cadre of counsellors with a much more complex set of responsibilities.

Counselling should be related to something important to the couple, eg conception, to enhance the immediate relevance for those who may be reluctant about counselling.

May need some specific, separate counselling for the negative partner to address the realities of living with an HIV-positive partner.

Very good training for providers must be available before services rolled out – need to be sure to eliminate the name/shame/blame game.

The post-test counselling has to deal with trust, blame, reinforcement of technical information about how a couple can be discordant and live safely… all of this needs to be done in a more holistic way.

We want to be able to put another 4 million people into counselling and we simply don't have the facilities for that – how are we going to do it?
Flexible approaches to counselling will be required, perhaps based on assessment of couple's stability and readiness for the process.

May be useful to find creative ways to structure the counselling – ½ day together, separate sessions to discuss sensitive issues or to accommodate one partner's needs for privacy etc.

Significant resources will be required.

CHTC-outline for semi-structured interviews

  1. Background information
    • Age
    • Family information
    • HIV serostatus
    • Relationship status
  2. HIV testing experience
    • Where tested
    • Tested alone
    • Tested with another - supportive person, partner
    • General experience
  3. HIV disclosure
    • Advice from provider re disclosure
    • Your experience with disclosure in general
    • Specific experience with disclosure to partner
      • Positive aspects
      • Negative aspects
  4. Impact of disclosure on:
    • Health issues
    • Having children/thinking about having children
    • Caring for/raising children for those who have had children
    • HIV prevention issues
    • Any other issues
  5. Treatment for prevention
    Views and personal experience re:
    • Stopping using condoms if negative partner on treatment ( as per Swiss statement conditions)
    • Stopping using condoms to conceive
    • Continue using condoms even if VL suppressed
    • Start treatment before clinically indicated (i.e. when CD4 >350 to prevent transmission to negative partner)
  6. HTC for couples
    Thoughts about offering couple testing in health settings (e.g. for women in ANC or for people being offered HTC in TB clinics)…
    Explore this in detail:
    • In what situations would you recommend?
    • When would you not recommend couples counselling?
    • What do you think the benefits would be?
    • What are the disadvantages, cautions?

Footnotes

2

Vernazza,P, Hirschel B, Bernasconi E, Flepp, M. HIV-positive individuals without additional sexually transmitted diseases (STD) and on effective anti-retroviral therapy are sexually non-infectious. Schweizerische Ärztezeitung / Bulletin des médecins suisses / Bollettino dei medici svizzeri / 2008; 89:5

Copyright © 2012, World Health Organization.

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