30.4.2. HIV self-testing
General views
Awareness of HIVST was low among most participants, but most felt it would be beneficial due to the confidentiality of the test; many people emphasized this as the key determinant in the decision to be tested. Other benefits mentioned were decreased embarrassment and shame, simplicity and less time required than at HTS sites. Some participants felt the convenience of this option would allow a person to test more frequently. Others felt that HIVST would reduce their worries, and some people mentioned using the test to confirm a negative test result. Some people living with HIV suggested that this approach would eliminate the stigma and discrimination they had experienced attending HTS. However, several participants noted concerns about receiving a positive result without the information and support available at a testing site. Some female sex workers in Jordan questioned the accuracy of the test.
“I prefer to have the test in the presence of a specialized person because of my limited knowledge regarding how to deal with the disease…many will collapse if the result is positive and wouldn’t know what to do.” Male, PWID, 25 years
“… Since it is a self-administered test I will avoid fear and shame related to requesting the test as the person might look downward on me…so it prevents embarrassment.” FSW, 42 years
“Imagine a person… alone, and the result comes positive, don’t you think he/she will commit suicide? A supportive person should be present while doing the test.” FSW, 33 years
Service providers, while noting confidentiality and reduced exposure to stigma and shame as benefits of HIVST, stressed the importance of pre- and post-test counselling to ensure that individuals understand the process and implications of testing as well as supporting the individual with a positive test result. Providers also noted a number of challenges in establishing access to HIVST:
Low levels of knowledge about HIV and its consequences;
Partner notification;
Access to treatment and follow-up;
Psychological impact of a positive test result (which may be a false positive);
The need for confirmation of a positive result, which the individual may not seek;
Possibility of misunderstanding a negative test result;
Exposure to exploitation or abuse by a partner;
The possibility of losing the link between testing and follow-up services;
Lack of confidence in key populations to practice prevention;
Exposure to legal consequences or discrimination if accessing through pharmacies;
Appropriate conservation and handling of testing supplies;
Inappropriate use of the test.
“The test can be used in unhealthy ways: in some cases known to us, people talked about buying the test and administering it to the partner before the sexual relationship; if the result is negative then they will not use condom….” Service provider, age non available
“We will lose the opportunity to inform the partner and we might not be able to offer the needed follow up in case of a positive result. Furthermore, in case of a negative result we will lose the opportunity to inform about essential services…and discuss the use of a condom, etc. as well as to maintain the “healthy” status of the person in relation to any sexually transmitted diseases and to adopt safe behaviour.” Service provider, age non available
Uptake of HIVST
The majority participants from PWID and FSW communities stated that they would use the self-test if it were available, while people living with HIV were more divided, although few had used the self-test. Many of those in favour felt that detailed but clear information about how to use the test and interpret results is critical to uptake. Some female sex workers saw it as an opportunity to test clients or partners who refuse to use a condom.
“It is an outstanding test, however not effective without information.” Male, PWID, 30 years
“… I say we should ask the clients who refuse to use the condom to undertake the self-test first.” FSW, 33 years
“The test is safe and rapid; I believe people will use it because it will save time and effort. I will surely use it. It is good that a person checks on him/herself.” Female, people living with HIV, 25 years
Those not in favour of HIVST felt the need to take the test in the presence of a trained provider to assure adequate support, including risk assessment and counselling on how to cope with a positive test result, and referral to services as necessary.
“It is better if someone administers the test for me and ensures confidentiality and privacy, because if the result is positive they will tell me what to do and they might have a treatment or [something] that can help me.” Male, PWID, 49 years
Reasons for reluctance among people living with HIV included concern about misuse and inaccurate results; fear of a harmful reaction (such as suicide) to a reactive result; lack of support from service providers; unethical behaviour by a person who has received a positive test result with no counselling or other support; and difficulty in accessing comprehensive care following the test.
“I don’t recommend it (HIVST) because it is not very good that the person does the test alone because he/she might face a psychological collapse. What [would] stop me from doing the test is the fear of being alone. What is encouraging about it is that the person can reassure himself (about his serological status).” Female, people living with HIV, 49 years
Some providers believe that HIVST will be popular with key populations as a safer, more private testing option. Some reported having received requests from key population community members for a self-test, and some of these individuals had requested using rapid tests from NGOs in a similar way to the self-test. A provider noted that FSW could face the prospect of losing their income if they had a positive test result. Other concerns regarded the safety of injecting drug users if they are arrested and found to be in possession of a self-test.
Accessibility and delivery
Unassisted self-testing was considered safer by some participants, but most people felt that some level of assistance or engagement with a knowledgeable person was preferable to avoid facing the shock of a positive test result alone. Delivery through a specialized NGO or health centre would ensure confidentiality, information, support and referral to follow-up services as needed. Delivery through outreach workers was also considered acceptable, while participants were less certain about obtaining the test at pharmacies (unless pharmacy staff had training and appropriate, nonjudgmental attitudes) due to concerns about stigma, exposure and personal safety.
People living with HIV felt that HIVST should be widely available, even though schools and universities, and that it should be free. A common view is that more awareness of the challenges that face key population communities is needed, and that stigma reduction in the general population would facilitate access to HIVST.
Some FGD participants felt that both directly-assisted and unassisted approaches should be available to ensure optimal coverage for PWID and the general population. Lebanese participants preferred facility-based HTS to HIVST.
All providers in the virtual consultation agreed that HIVST should be one of the options for HIV testing. Promotion of this testing approach, however, should be preceded by general awareness-raising campaigns on HIV in order to correct misconceptions and to decrease stigma and discrimination. In their view, this would help key population community members to feel more confident about seeking testing.
Providers also recognize that negative provider attitudes and fees for testing services are significant barriers to access for key populations, especially for female sex workers. Based on these service quality issues, as well as concerns about breaches of confidentiality, risk of arrest and exposure to abuse that are viewed and experienced as barriers to services by some members of key populations, providers stressed the importance of specific training—with the participation of key populations—for providers and government actors on the importance of HIVST in curbing the HIV epidemic.
Providers felt that key populations are not ready for unassisted approaches, especially people who inject drugs, who may be more dependent and vulnerable to discrimination, and who may need assistance when self-testing and counselling, along with interventions and support to modify risk behaviours. Some also felt that unassisted HIVST is not culturally sensitive in the regional context where there may be more confidence in accessing HIV testing through trusted service providers rather than through the internet or other distributors. Most providers felt that the directly-assisted approach through outreach workers or NGOs would be preferable as most members of key populations (especially PWID) would be reluctant to purchase from pharmacies due to fears of being judged or apprehended by the police.
Some providers suggested using brothels as distribution points where a trained counsellor would also be available.
Some providers felt that the directly-assisted approach was so similar to traditional testing with an NGO provider that an individual might as well test and receive assistance in place. But when HIVST was preferred, hotlines and access to counselling and services should available. If possible, key populations should be trained in promoting and supporting HIVST in their communities.
Information dissemination
Promotion of HIVST should be done—with the participation of key population community members—through a robust information campaign in Arabic, using both mainstream and social media. The test package should contain comprehensive information about the test itself (sensitivity and specificity), the pros and cons of the approach, clear usage instructions, and explicit information on the actions to take in the case of a positive result. The importance of confirmatory testing must be stressed. Contact information including physical addresses for follow-up services and hotline numbers should be included. Formats should be context- and audience-specific, using appropriate language and videos and booklets with clear instructional graphics. Providers considered follow-up through outreach workers as potentially useful. However, participants emphasized the need to be cautious about channels of communication that could be used to identify arrest or abuse key population members, especially in the PWID community.
“Going on the streets where the girls are working is very important to enable them to know about the HIVST and where to get it.” FSW, 43 years
30.4.2. Partner notification
Willingness to notify partner/s
Around half of participants from the PWID community said they would notify their sexual or injecting partners or disclose to their family in order to get support; to encourage a partner to take an HIV test; and to seek advice. Most FSW participants were reluctant to notify their partners due to fear of retribution, while opinions among FSW in Lebanon were divided. Some would consider notification if they could avoid seeing the client again or if they could convince the client that he was the source of infection. Almost all people living with HIV agreed on the importance of notifying partner/s because of the links to preventing transmission, avoiding disruption of relationships and getting support; some people living with HIV felt that partner notification should be obligatory.
“It is not a problem for the sex worker to know about her HIV infection; of course she will be afraid to lose her job …” FSW, 24 years
“It is the right of the partner to know since maybe the virus will be transmitted to him if no protection is used, [and] he can get the treatment if he is infected. It is a crime if not told.” FSW, 29 years
Providers felt that most people will notify their partner/s of a positive test or diagnosis, but that it may take time to accept the result, have it confirmed and then come to terms with the new situation. Factors that may affect willingness to notify include type of relationship (it may be easier to notify a stable partner vs. an occasional partner); level of trust between partners; and quality of communication between partners.
Barriers to partner notification
The nature of HIV infection and taboos related to sex and stigma underlie most of the barriers to partner notification discussed by participants. These include fear of rejection or betrayal by a partner or family, and fear of manipulation or aggression by a partner or others. Female sex workers, often viewed as guilty of spreading disease, believe that they are particularly vulnerable to the risks of partner notification. They fear verbal and physical abuse from clients and loss of work, as well as rejection by partners. Some also mentioned feeling that they did not have to skills to inform a partner about their HIV status. FSW also face challenges due to the number of partners they may have and an inability to contact former clients. A few participants who are living with HIV felt that partner notification is “risky” due to the reasons listed above.
Participants proposed ways to address barriers, such as consultation with a trusted provider or friend; getting more informed about how to notify a partner in the most effective or supportive way; and attending HTS as a couple. Facilitating factors included: type and quality of the relationship; knowledge about the disease and skills to notify the partner; and the presence of a service provider for guidance and support.
Delivery of partner notification services
Views on partner notification services and types of referrals varied widely across countries; there was no consensus. However, many participants, including providers, emphasized the need to improve counselling services and train both service providers and community members on partner notification.
“Dual referral is better so that he empathizes with me and the service provider would better explain to him.” FSW, 24 years
“Passive referral is better as it reinforces the trust between the married couple or lovers.” FSW, 25 years
Most participants expressed a preference for assisted over passive services, although Lebanese participants were more inclined toward passive services. In general, participants felt that partner notification could be enhanced through training; greater awareness about the benefits; more open communication between sexual partners; and better promotion of services through a variety of channels, including social media.
“Should inform him wisely in the presence of a neutral person to avoid misunderstanding and get support.” Male, PWID, 25 years
Providers recognize that individuals have different needs and preferences. Therefore, all the modes of delivery should be offered. In addition, more work is needed to educate the public on HIV, treatment options and human rights in order to reduce stigma and to reduce the fear and misconceptions around living with HIV, as this would support and facilitate the partner notification process. Some participants mentioned the importance of support for adherence to treatment in cases where a person refuses to notify their partner.