HIV Counseling and Testing in Uganda: A Literature Review Prepared by Jennifer Orkis For HCP Uganda June 2008 Table of Contents TABLE OF CONTENTS ............................................................................................................................................1 ACRONYMS................................................................................................................................................................2 INTRODUCTION .......................................................................................................................................................3 METHODOLOGY ......................................................................................................................................................3 CONTEXT ...................................................................................................................................................................4 HCP POLICY ..............................................................................................................................................................4 HCT COVERAGE ........................................................................................................................................................4 HIV COUNSELING AND TESTING........................................................................................................................4 KNOWLEDGE .............................................................................................................................................................4 UPTAKE .....................................................................................................................................................................5 BARRIERS TO HCT ....................................................................................................................................................5 FACILITATORS TO HCT .............................................................................................................................................9 COUPLES HCT ...........................................................................................................................................................9 BENEFITS OF CHCT ................................................................................................................................................. 10 BARRIERS TO CHCT ................................................................................................................................................ 10 MESSAGES PROMOTING CHCT ............................................................................................................................... 10 INTERVENTIONS FOR CHCT .................................................................................................................................... 11 PREMARITAL CHCT ................................................................................................................................................ 12 COST EFFECTIVENESS OF CHCT.............................................................................................................................. 12 RIGHTS-BASED HCT ............................................................................................................................................... 12 RISK REDUCTION COUNSELING ............................................................................................................................... 12 DISCORDANCE ....................................................................................................................................................... 13 DISCLOSURE ........................................................................................................................................................... 15 TARGET AUDIENCES ............................................................................................................................................ 17 PREGNANT WOMEN .................................................................................................................................................. 18 YOUNG PEOPLE ....................................................................................................................................................... 19 CHILDREN................................................................................................................................................................ 20 REPEAT TESTERS ..................................................................................................................................................... 21 HCT CAMPAIGNS IN UGANDA AND BEYOND ............................................................................................... 21 UGANDA: ENHANCING COUPLES HCT .................................................................................................................... 21 KENYA: IMPACT OF LOGO USE AND A MASS MEDIA CAMPAIGN ON THE UTILIZATION OF VCT SERVICES ............. 22 LESOTHO: KNOW YOUR STATUS CAMPAIGN ........................................................................................................... 22 BOTSWANA: PROMOTION OF CHCT IN TEBELOPELE’S VCT CENTERS .................................................................... 23 NIGERIA: DEVELOPMENT OF A NATIONAL HCT LOGO AND CAMPAIGN .................................................................. 23 MALAWI: NATIONAL TESTING WEEK ...................................................................................................................... 24 SOUTH AFRICA: LEVERAGING THE POTENTIAL OF THE PRIVATE SECTOR ................................................................. 25 ZAMBIA AND RWANDA: COUPLES VOLUNTARY COUNSELING AND TESTING (CVCT) CENTERS ............................. 25 ZAMBIA: IMPROVING CLIENT-CENTERED COUNSELING MESSAGES ........................................................................ 25 CONCLUSION .......................................................................................................................................................... 26 REFERENCES .......................................................................................................................................................... 27 1 Acronyms AIC AIDS ARV ART CHCT HBHCT HCT HIV MOH NTIHC PEP PEPFAR PMTCT RCT TASO UBOS UDHS UHSBS VCT AIDS Information Center Acquired Immunodeficiency Syndrome Antiretroviral Antiretroviral Therapy Couples HIV Counseling and Testing Home Based HIV Counseling and Testing HIV Counseling and Testing Human Immunodeficiency Virus Ministry of Health Naguru Teenage Information and Health Center Post Exposure Prophylaxis President’s Emergency Plan for AIDS Relief Prevention of Mother to Child Transmission of HIV Routine Counseling and Testing The AIDS Service Organization Uganda Bureau of Statistics Uganda Demographic and Health Survey Uganda HIV/AIDS Sero-Behavioural Survey Voluntary Counseling and Testing 2 Introduction HIV counseling and testing (HCT) is thought to have major benefits for both HIV prevention and treatment, care and support. In addition to being the gateway to treatment, care, and support services for people living with HIV, knowledge of status and information given in pre- and post-test counseling sessions allow for HIV infected and uninfected persons to make informed choices about their sexual behavior, and may help individuals adopt protective behaviors and risk reduction strategies appropriate for their personal circumstances. Such behaviors may include delayed sexual debut, secondary abstinence, partner reduction, alternative forms of sexual expression, initiation of condom use, or a commitment to correct and consistent condom use. Disclosure to partners can be seen as a further method of prevention; knowledge of a partner’s enables one to make fully informed decisions regarding their sexual behavior. Disclosure is also beneficial to people living with HIV, as it is associated with reduced stress levels and other positive psychosocial outcomes. However, the evidence on the effectiveness of HCT for prevention behaviors is largely inconclusive, particularly for HIV-negative individuals. A meta-analysis of HCT effectiveness in developing countries found that HCT recipients were significantly less likely to engage in unprotected sex, when compared to their behaviors before receiving HCT, or to participants who had not received HCT (Denison et al. 2007). These effects were largest among HIV-infected persons or discordant couples. HCT had no significant effect on number of sex partners for HIV positive or negative persons. In Uganda, only 25% of women and 21% of men age 15-49 have ever tested for HIV and received their results, despite relatively high awareness of where to receive a test (UBOS & Macro International Inc 2007). However, additional evidence indicates that willingness to test is actually much higher than actual testing rates. In order to increase demand for and uptake of HCT, several stakeholders in Uganda are joining forces to design and implement a national social and behavior change communication campaign for HCT. The present literature review seeks to inform this process, and as such addresses the current context of HCT in the country; the major barriers and facilitators to uptake of HCT, and emerging issues in the HCT arena, including couples HCT, discordance, and disclosure. The review proposes specific evidence-based messages and interventions when appropriate, and examines HCT programs that have been implemented elsewhere on the continent. Methodology This literature review synthesizes qualitative and quantitative information around the current HCT context in Uganda, using an extensive array of peer-reviewed research, household surveys, and programmatic and policy documents published within the last 10 years. The Health Communication Partnership provided pertinent programmatic and policy documents and recommendations for additional references, the latter of which were sourced online. PubMed and Scopus databases were used to identify relevant peerreviewed articles using combinations of the search terms “HIV counseling testing,” “discordance,” “disclosure,” and “Uganda.” Additional online searches for supporting documentation were conducted using the same search terms. The author conducted interviews with key informants to supplement this information. 3 Context HCP Policy Uganda has been providing VCT services since 1990, and put a VCT policy in place in 2003. In 2005, scientific and programmatic advances in HCT, treatment and care prompted the Uganda Ministry of Health to adopt a new HCT policy. The Uganda National Policy on HIV Counseling and Testing (Uganda Ministry of Health 2005) aims to expand the range of testing services. While voluntary counseling and testing (VCT) remains the main model of implementation, the new HCT classification covers four separate approaches to counseling and testing for HIV, including: Voluntary Counseling and Testing (VCT): VCT is client-initiated, and offered in stand-alone sites or health/outreach centers. With VCT, clients are assured full confidentiality. Home Based HCT (HBHCT): In HBHCT, VCT is provided to individuals or families in the home environment, either through campaigns or for families of HIV infected persons enrolled in treatment and care programs. Routine Counseling and Testing (RCT): This provider-initiated method of HCT is offered to patients during clinical evaluation, along with any other recommended tests or investigations. RCT includes PMTCT and diagnostic HCT, in which a client’s clinical status suggests HIV infection. Patients can choose to reject or defer; the test is not mandatory. In Uganda, full pre-test counseling and specific consent not required for RCT. HIV Testing for Post Exposure Prophylaxis (PEP): After accidental exposure to body fluids, it is typical to test both the exposed and source person, although the source only if he or she consents. The MOH indicated that the national policy is again due for review, and will be updated to include recommendations on medical male circumcision, among others (Akol 2008). Minimum standards for HCT services in Uganda currently include qualified personnel, a space for confidential counseling, a laboratory or materials for conducting HIV testing, and services conducted according to the specified guidelines. Under the service guidelines, patient information must be kept strictly confidential, informed consent obtained from each client, and the HCT protocol steps of initial contact, a pre-test session, HIV testing, a post-test session, and referral and follow-up followed. HCT Coverage Nearly all districts in Uganda have some degree of MOH or PEPFAR-supported HCT coverage, although the majority cover less than 20% of eligible HCT clientele. Seven districts have achieved 20-50% coverage, and just one (Kumi district) has coverage between 50-75% (Akol 2008). Between 2005-2006 and 2007, the percent of the eligible population tested for HIV decreased in all regions. Reasons for this consistent decline are currently unknown. HIV Counseling and Testing Knowledge Knowledge around availability of HCT is relatively high in Uganda: 82% of women age 15-49 and 87% of similarly aged men know where to get an HIV test (UBOS & Macro International Inc 2007). A secondary analysis of 2000-2001 UDHS data found that neighborhood knowledge of a test site one of the strongest predictors of HIV testing among married men (Gage & Ali 2005). However, fewer people are 4 aware of the benefits of VCT. Only 39% of women and 47% of men age 15- could name at least two of the following benefits: to be able to plan one’s future, to avoid reinfection if one is already positive, and to learn to live positively with HIV/AIDS (Mukaire et al., 2004). While the knowledge of availability is encouraging, low knowledge of the value of HCT has implications for service uptake. Information about HCT appears to come from a variety of sources. A study in Kamuli and Mbarara districts found that most people obtained their information on HCT through radio programs, church gatherings, friends and/or public gatherings (Nsabagasani and Yoder 2006). Uptake Despite this reasonably high awareness of HCT, services have not been widely utilized. As of 2004-2005, only 13% of women and 11% of men age 15-49 had ever been tested for HIV and received their results, and a discouraging 4% of women and men tested in the last year (Uganda Ministry of Health & ORC Macro 2006). HCT estimates from the 2006 UDHS are notably higher, however. A reported 25% of women and 21% of men age 15-49 have ever tested and received results, and 12% and 10% of women and men, respectively, have received their results in the last 12 months (UBOS & Macro International Inc 2007). While this increase is encouraging, the fact remains that the vast majority of the country has not been tested for HIV and remains unaware of their HIV status. Evidence from VCT, RCT and HBCT acceptance studies, however, indicates that willingness to test and acceptance of testing for HIV are exceptionally high in certain circumstances. In a study that systematically sought out household members of ART-eligible clients for HBHCT, an astounding 99% (2348 of 2373) of household members accepted (Were et al. 2006). Of these, 95% had not tested previously. It should be noted, however, that these individuals accepted in the context of provision of ART. Another study to determine acceptance of RCT at Mulago national referral hospital found that 95% (198 of 208) of those unaware of their HIV status or who had previously tested negative accepted to test (Nakanjako et al. 2007). Research out of Rakai found that 93% of the cohort initially requested HIV results, and 62% subsequently received their results and post-test counseling (Matovu et al. 2007). These findings suggest that “low uptake of VCT should not necessarily be interpreted as lack of demand to know results” (Wolff et al. 2005), and implies that the removal of certain social, structural, and other behavioral barriers has the potential to increase HIV testing rates. The following section will explores reasons for the disconnect between the seemingly high levels of HCT knowledge and willingness to test and the low levels of uptake. Barriers to HCT A number of qualitative and quantitative studies have examined barriers to accessing HCT, accepting HCT, and/or receiving one’s test results. Table 1 presents a comprehensive overview of these findings. While participants’ responses are many and diverse, certain themes become quickly apparent. These include: lack of knowledge, misconceptions, low risk perception, fear, lack of motivation/time, fatalism, economic barriers, structural/service barriers, gender barriers, and readiness barriers. Several studies found that lack of perceived risk of HIV infection was a major reason for not receiving a test. The best estimates of perceived HIV risk come from the 2004-2005 UHSBS. An estimated 21% of women and 23% of men perceive themselves to be at high risk of getting infected with the HIV, another 36% of women and 35% men perceive their risk as moderate, 18% of women 17% of men perceive low risk, and 12% of women and 13% of men think they have no chance at all of getting HIV (Uganda Ministry of Health & ORC Macro 2006). 5 In an assessment of the Multi-county AIDS Project (MAP), the Uganda AIDS Control Project investigated reasons why 33% of men 36% of women in their sample felt they were at high risk of HIV infection, as well as the reasons why the remaining portion of the sample felt they were at low or no risk (Mukaire et al. 2004). The most commonly mentioned reason for both men (39%) and women (60%) who perceived themselves to be at high HIV risk was not trusting their partner. Other reasons for high levels of perceived HIV risk included having many partners (33% for men, 16% for women), having no steady partner (20% for men, 22% for women), not using condoms (16% for men and 11% for women), because most people are infected (12% for men and 8% for women), and not being married (5% for men and 4% for women). Among those who thought themselves to be at low or no risk of HIV infection, 97% of men and 32% of women said it was because they were faithful, and another 41% of men and 23% of women said it was because they were married. However, a faithful and/or married individual only knows if he or she is faithful, not necessarily whether or not his or her partner is equally monogamous. Thus, this conviction that being faithful reduces HIV risk is incomplete without taking into account the fidelity of one’s partner. Much smaller percentages of men and women said they were at low risk due to condom use (11% of men, 4% of women) or abstinence (4% of men, 10% of women) – arguably the two more reliable ways to reduce HIV risk. Fear of knowing one’s status, as well as the resulting consequences, also came out strongly as a behavioral inhibitor in multiple studies. Respondents were not only concerned about the health implications of receiving an HIV positive test result, but also about the reactions of their partners (separation, loss of income, physical abuse), family members (blame, neglect), and the community at large (gossip, discrimination), suggesting that, as much progress as has been made around stigma in Uganda, there is still a need to address this issue. Although not easily addressed through social and behavior change interventions, financial barriers and distances to testing sites were other important limiting factors. A certain apathy also seems to exist around HCT. Three studies found that respondents were unconcerned about their status or couldn’t be bothered to go for counseling and testing. HCT was not a priority. Despite the relatively high levels of HCT knowledge reported in the 2006 UDHS, general unfamiliarity with HCT and a more specific lack of awareness about where to go for HCT still came out as barriers in these studies. For some, the thought of going for HCT had simply never occurred to them. Further, Mukaire et al. (2004) and Wolff et al. (2005) isolated myths and misconceptions pertaining to HCT, particularly prominent in rural communities. It will be important to correct these misunderstandings and provide reassurance about the confidentiality and validity of the process. 6 Table 1. Barriers to HIV Counseling and Testing Theme Lack of Knowledge Barrier Lack of knowledge of HIV counseling and testing Do not know where to get an HIV test Misconceptions Low Risk Perception Fear Not sure when/where VCT outreaches will be conducted Never thought of testing When found positive, you are injected with drugs that may kill you Printed lists of names and test results are pinned on the wall of the counseling office. Tests are not valid; some who publicly claim to test negative for HIV fall sick or die shortly afterwards Counselors will change positive test result to a negative one for a sufficient sum of money VCT program makes money by selling blood for a profit (program benefits by most people receiving their results, otherwise they would not promote it to such an extent) Lack of perceived risk of HIV infection No previous illness Have been faithful/not sexually active Fear of results/knowing one’s status Fear of consequences of test results (reaction of spouses, partners, family members, community members) Lack of motivation/time Fatalism Economic Barriers Fears of inadvertent disclosure or false rumours starting from being seen at the counseling offices Fear of “emotional transparency” that would allow others to guess their status after learning of their result Fear that worry about the future would hasten poverty and death by accelerating the course of the disease Unconcerned, not a priority, can’t be bothered Don’t want to know if have the virus No incentives (e.g. soap, food) Difficult to find time to leave the home and maintain standards of dress and appearance Individuals assume they are already HIV positive – why test? Test costs too much/lack of money/lack of access to free testing References UHSBS 2004-2005 Mukaire 2004 UHSBS 2004-2005 Mukaire 2004 Mukaire 2004 Wanyenze 2006 Mukaire 2004 Wolff 2005 Wolff 2005 Wolff 2005 Wolff 2005 UHSBS 2004-2005 Mukaire 2004 Wanyenze 2006 Were 2006 Nakanjako 2007 Wanyenze 2006 Wanyenze 2006 Mukaire 2004 Were 2006 Nakanjako 2007 Wolff 2005 Mukaire 2004 Wolff 2005 Nakanjako 2007 Wolff 2005 Wolff 2005 Wolff 2005 UHSBS 2004-2005 Mukaire 2004 Wolff 2005 UHSBS 2004-2005 Mukaire 2004 Wolff 2005 Mukaire 2004 Wolff 2005 UHSBS 2004-2005 Mukaire 2004 Wanyenze 2006 7 Nakanjako 2006 Structural/Service Testing site is too far/no transport Barriers Negative attitude of health workers toward client Can’t get treatment if HIV positive Gender Barriers Readiness Barriers Long, unpredictable waiting times to get results in rural areas Afraid results are no longer valid by the time they become available Do not trust health workers to give true results Do not trust instruments used for testing (may give false results) Husbands won’t allow their wives to go for VCT Need to consult sexual partner prior to HIV testing Need for more time to think about it UHSBS 2004-2005 Mukaire 2004 Were 2006 Mukaire 2004 UHSBS Mukaire 2004 Wolf 2005 Wolf 2005 Mukaire 2004 Mukaire 2004 Mukaire 2004 Nakanjako 2007 Nakanjako 2007 8 Facilitators to HCT Nsabagasani and Yoder (2006) examined individuals’ reasons for receiving an HIV test in Kamuli and Mbarara districts. Symptoms of a chronic illness often triggered testing, particularly when these symptoms were apparent to all, when symptoms did not respond to treatment, when symptoms impaired one’s ability to work normally, or when people knew their partner had died of AIDS. Oftentimes, friends or family members would advise these individuals to go for testing. Hope of obtaining ARVs and resultant improvement was a further reason. Respondents knew that ARVs would help them live longer. Concern about past sexual activities also emerged as a motivating factor. These include past sexual experiences with a person who later died with conditions similar to AIDS, recent unprotected sex, personal anxiety over having multiple sexual partners, or concern over the condom “leaking.” The potential to gain access to support services was also influential, as was concern about initiating or continuing a sexual relationship. Several married men had been asked by their wives to get an HIV test repeatedly. Couples HCT The International HIV Counseling and Testing Workshop in Lusaka, Zambia identified couple counseling and testing as one of the six key issues for national CT policies and guidelines (National CT Policies and Guidelines 2008). The Government of Uganda’s special attention to CHCT in its policies and guidelines signifies its importance as an HCT strategy in Uganda. Couples HCT (CHCT) is comprehensively defined by the Ministry of Health’s HIV Counselling and Testing Toolkit for Coordinators and Supervisors (2005) as “HCT given to any two clients who come to take an HIV test together. The couple may be planning to have sex together or they may already be having sex together.” This is in line with findings out of the Lusaka workshop, which held that not only married and cohabitating couples, but also couples in pre-marital, casual, polygamous, and other sexual partnerships be targeted for CHCT (Lusaka Report 2008). Practically, CHCT in Uganda includes the same steps as HCT. Additionally, Uganda’s National Policy on HIV Counseling and Testing (Uganda Ministry of Health 2005) holds that the pre-test session must be voluntary by both partners, and that the couple should agree to treat the other with respect and dignity, encourage equal participation of the other, listen and respond, provide understanding and support, engage in candid and open discussion of HIV risk issues, receive their results together, respect the confidentiality of their partner’s result, and make a mutual decision about disclosure to others. Despite policy guidance, however, HCT remains focused on individuals in Uganda, rather than couples in sexual partnerships (Conversation Notes 2007). Even when interventions do attempt to focus on couples, Painter (2001) argues that there’s a greater emphasis on the “technicalities” of safer sex (e.g. correct and consistent condom use) than with the presence or absence of communication and negotiation processes. When clients go for individual VCT, discussions are between the client and the counselor, and therefore disassociated from the clients’ everyday realities of a couple relationship. Following the session, individual VCT clients return to their partners, who affect clients’ abilities to follow through on decisions made during the individual sessions. Painter gives credit to AIC as an exception to the emphasis on individual counseling. AIC’s number of persons requesting VCT as couples steadily increased from 8% of all clients in 1992 to nearly a third in 2001. Promotions that target couples with a two-for-one approach and pressures from young couples’ families and churches to be tested before marriage were primary facilitators for the increase. 9 Benefits of CHCT In terms of message development, the Toolkit (Uganda Ministry of Health 2005) articulates the benefits of CHCT in the Ugandan context, which any program aiming to carry out HCT promotion should take into consideration: The couple is supported to discuss risk concerns and issues. The couple learns together about how to adopt safer sex practices. They learn about shared responsibility among partners and hear information and messages together. The couple learns their results together and receives appropriate counseling and support. If results are positive or discordant, the counselor can help reduce tension and prevent blaming. The couple can plan for their future and that of their family. Can strengthen the relationship and promote mutual understanding between the couple. AIC promotes the following benefits of couple counseling: Couple HIV Counseling and Testing (CHCT) allows sexual partners to learn their HIV status together as a unit. Couple Counseling sessions focus on discussing risk issues and concerns, risk reduction, and linkages to care, treatment, and support. Pre- and post-test counseling sessions focus on recommending and offering the HIV test, obtaining informed consent, using the test results to make medical care decisions or recommendations, and providing appropriate referrals. Couple counseling and testing identifies discordant couples. Once they learn they are HIVdiscordant, couples can adopt preventive behaviors to reduce the chances of HIV transmission to the negative partner (Byruhanga 2008). Barriers to CHCT In addition to barriers to HCT in general, couples HCT faces its own unique challenges (Nwalika 2008): Many people do not realize couples can have different test results There is a belief that monogamy is ‘safe’ Fear of stigma Gender inequality Lack of knowledge about where to obtain CHCT Couples require specialized counseling, hence there is increased need to improve the capacity of counselors Inadequate resources – limited publicity, community mobilization, documentation Inadequate on going support services for the couples after HCT Bringing the couple together for HCT at the same time, given different work and domestic schedules Messages Promoting CHCT Multiple sources have suggested messages to promote CHCT (Uganda Ministry of Health 2005; Bunnell 2008; New Start 2008): Always aim to test before starting a new relationship. HCT helps couples stay safe. If you are both negative, you work out how to keep staying safe. If both positive, you plan to live together positively. If one is negative and the other positive, HCT can help you to support the positive one to live longer. 10 Testing together is one of the best things you can do. Never judge your partner. Testing as a couple is a good way to start. A counselor can help you both cope with your situation. If you are planning on getting married or having children or even if you are already married, you owe it to yourself, your partner and your children to know each other's HIV status. Many couples are afraid to even bring up the subject of going for counseling and testing. Here are a few tips on how to bring up the subject with your partner: - Remind your partner that your children's future depends on it. Any couple considering having a baby should both be tested for HIV so that they can avoid transmitting HIV to the child during birth. If you already have children, you owe it to your family to remain healthy so you can take care of them. - Focus on the positive aspects of knowing each other's status. Let your partner know that if you find out early that you are HIV-positive, you can make lifestyle changes that allow you to live a long life. If you find out that you are HIVnegative, you can make sure you stay negative. Whatever the result - HIV-positive or HIV-negative - learning your status, and learning early, is the right choice. - Don't talk about past infidelities. Many couples don't want to even talk about testing because they think it will lead to arguments about infidelity. Start the conversation by telling your partner that you don't want to discuss infidelity and that you want to test because anyone who has sex even once could have HIV. Focus on the future. - Remind your partner that just because you are negative does not mean your partner is also negative and vice versa. Most people don't know that it is very common for one partner to be HIV-negative and the other to be HIV-positive. Interventions for CHCT Painter (2001) and Coates et al. (2008) offer several practical suggestions for interventions to encourage and improve CHCT, which include: Use HIV positive men/women/couples that have coped successfully after receiving positive results from HCT Cover a range of more specialized topics for couples, including approaches to develop realistic prevention strategies within couples, detailing roles/responsibilities of couple members, thereby better equipping and empowering couples to work together Provide community-based support for couples, including confidential support groups Consider redefining the benefit of CHCT as one of protecting children (the next generation) from HIV/AIDS Convince political and public health leaders to speak more often and more convincingly about the importance of HCT for couples, e.g. a tv/radio mini-series that follows a head of state and his wife through the HCT for couples process Synchronize messages between new treatment options and prevention information Target couples with complementary information and recruitment efforts Understand and address risk factors for violence and break-up of relationships Assist couples in negotiating safer sex strategies Establish strategies to deal with serodiscordance Consider integrating contraceptive counseling 11 Premarital CHCT Kamenga (2008) argues that premarital HCT for couples is a serious neglected opportunity for HCT promotion. Rather than focusing on the potential benefits of premarital CT, debate has centered around its mandatory versus voluntary aspect, and premarital HCT has therefore has been left to families, churches, and municipalities, rather than health promotion programs. However, some HCT services see sizeable numbers of people requesting HCT in preparation for marriage. This suggests latent demand for premarital CHCT that can be harnessed to increase uptake (Lusaka Report 2008). Kamenga also suggests that programmers can extend this concept beyond premarital HCT to pre-engagement testing, pre-sex testing, or other major life events, such as entering university or starting a new job. Of course, premarital HCT is not without its challenges. Often, sex starts before the decision to marry. Pressure to get married may cause people to forego the test, and there is a potential for negative social consequences, especially when HCT happens at the last minute. Discordant couples remain a challenge here, as does the potential for seroconversion after marriage. A whole new set of concerns exists were premarital HCT ever to be made mandatory, e.g. the possibility of fraudulent testing certificates. Kamenga advocates for the development of national guidelines and strategies on premarital HCT. Cost Effectiveness of CHCT A study that sought to estimate the cost effectiveness of various HCT strategies in Uganda found that the HBHCT with 100% coverage saw the most couples test together (22%), followed by VCT (12%), HBHCT for ART household members (5%), and finally RCT (3%) (Wamai et al. 2008). Rights-Based HCT Dixon-Mueller and Germain (2007) argue for a rights-based approach to HCT, whereby both persons in a sexual relationship have equal rights and responsibilities for their mutual pleasure and protection. Individuals’ sexual partners’ right to protect themselves from HIV corresponds with an obligation to respect a partner’s need to know and right to make informed sexual and reproductive health decisions. The authors advocate that clients be told that they have an obligation to inform your partner if they are HIV positive, and that their partners have a right to protect themselves from HIV. Clients can lead informed, safe, and satisfying sexual lives based on respect for mutual rights and responsibilities. There is need to discuss likely positive and negative outcomes of disclosure, including relationship dynamics, possible discrimination or violence. It is critical that counselors offer non-judgmental support. Risk Reduction Counseling Risk reduction counseling is essential in order to prevent risk compensation (Coates et al. 2008, Bunnell 2008). Risk reduction counseling involves moving people from their current risk status to one of lesser risk. This is done by tailoring the counseling session to the individual’s serostatus, risk factors, and potential to reduce risk. Counselors should assess clients’ current HIV transmission risk. Does the client have a partner of unknown or negative status? Is parent to child transmission of HIV a factor? Counselors should also assess clients’ personal motivation for reducing HIV transmission risk through questions such as “What are your reasons for not wanting to transmit HIV to your partner?” and “How would you feel if you infected your partner?” Finally, counselors should lead clients through a process of determining individual “safer goal behaviors” that they can adopt to reduce their chances of transmitting HIV. 12 Painter’s concept of the continuum of couple configurations should also be taken into consideration in order to appropriately support HIV positive women. The continuum includes: ongoing couple relationships where males partners are supportive following disclosure of women’s positive status; ongoing couple relationships where males partners are unsupportive following disclosure of women’s positive status; ongoing couples where women do not or cannot disclose their serostatus to partners; and couple relationships that have been seriously disrupted or destroyed due to prior conflicts related to sexual issues or following disclosure of woman’s HIV positive status. Discordance HIV discordance is common in Uganda. Estimates of discordance in the country range from 5-43% (Uganda Ministry of Health & ORC Macro 2006; Malamba et al. 2005; Were et al. 2006; Homsy et al. 2006). According to the 2004-2005 UHSBS (Uganda Ministry of Health & ORC Macro 2006), 5% of cohabitating couples are discordant, with the male infected in 3% of these relationships, and the female in 2%. In the remaining 95% of concordant relationships, an estimated 92% of cohabitating couples are both HIV negative, and 3% are both positive. Discordance is more common in urban couples, and is particularly high among couples who disagree whether their union is monogamous or polygamous. In a study that systematically sought out partners of ART-eligible clients for HCT, HIV discordance was dramatically higher: 43% of spouses of HIV-infected participants age 15-44 were HIV negative (Were et al. 2006). In a PMTCT-focused study, 13.5% (14/104) of couples tested during ANC had discordant results, and 7.4% of those (13/176) who tested at the maternity ward were discordant (Homsy et al. 2006). Although somewhat dated, approximately 9% of all couples and 18% of married couples at AIC were HIV discordant in 2000, and 74% of all HIV positive clients presenting at the clinic with their partners had a negative partner (Malamba et al. 2005). The Malamba study found that living together, having a high HIV load, being uncircumcised for men and reporting an STD with the 6 months before enrollment for women were significantly associated with being in an HIV concordant relationship. However, while other studies have found that women in discordant relationships are more likely to be employed, more educated, and have higher incomes than women in concordant relationships, Malamba et al. saw no significant differences between concordant and discordant couples when they looked at education and occupation. Combined with the high rates of discordance is an alarming lack of understanding and disbelief in the existence of discordance. Misconceptions around discordance are highly prevalent in Uganda: 75% of both men and women incorrectly believe that if one partner is infected with HIV, the other partner always is, too (Uganda Ministry of Health & ORC Macro 2006). This common conviction that co-infection is inevitable suggests a sense of fatalism and a mentality that if my partner is infected, I must be, too, which may in turn result in a lack of motivation to practice risk reduction behaviors. This data is supported by one of the most comprehensive qualitative studies on discordance in Uganda, which found that very few clients or counselors were able to give accurate information about why HIV discordance exists (Bunnell et al. 2005). Clients reported being confused by their HIV discordant results, and when asked why discordance exists, the most common initial response by both clients and counselors was that they had no explanation. Attempted explanations of HIV discordance reflected a common assumption that the efficiency of HIV transmission was much higher than scientific estimates, and focused on the characteristics of the HIV negative couple member, rather than on varying infectiousness of the HIV positive couple members. 13 Four dominant explanations of discordance emerged from clients, the first three of which were also identified in counselor explanations. 1. HIV-negative couple member is actually infected. Clients believed the HIV negative couple member was actually infected; the virus was just taking time to show up in his/her blood. Counselors heavily referenced the window period and the need to re-test, greatly inflating the probability that the HIV negative partner could be in the window period and indirectly communicating that the HIV negative couple member is infected, too. 2. Immunity. Clients believed that some people are immune from HIV infection, referencing “strong blood” and the “O” blood group in particular. 3. HIV infection is only through “rough” sex. “Gentle” sex and the amount of vaginal fluids present were seen as reasons for non-transmission of the virus. 4. Protection from God. HIV negative status was viewed as a reward from God. These explanations have the potential to undermine the motivation of discordant couples to engage in HIV risk reduction behaviors. If people believe that they are already infected; immune from infection; know how to practice ‘gentle’ sex, or have God’s protection; then they have little reason to adopt preventive behaviours in the future. Counselor testimonies further corroborate the difficulties communicating with clients about discordance: “Some of our most challenging cases are couples who arrive seemingly healthy and discover they are discordant. If the husband is positive, sometimes he will say, ‘I have been with my wife for a long time and she has not been infected yet. Why should we start using condoms now?’ He will take the free condoms we offer and the wife will return later tell us he is refusing to use them” (Alwano-Edyegu & Marum 1999). The Bunnell et al. (2005) study also shed light on the major challenges associated with discordance. Many couples thought discordance was very rare, and felt isolated by their test results. Couples did not consider that they might have entered their relationship with HIV discordant status. Discordance was equated with unfaithfulness of the positive partner, which resulted in blaming and strained relationships. The largest challenge, especially for women, was managing sexual relationships once found to be discordant. Coping and prevention strategies within discordant couples tended to evolve time, but condom use was the most common and preferred strategy. Separation was used in particular by couples whose relationship had been shorter and did not include children. Interestingly, children served as a bond that helped discordant couples to stay together and to protect the negative partner from HIV infection so that their children would not become total orphans. Abstinence was chosen by few couples, but many HIV negative females expressed that they would have preferred abstinence if their HIV positive partners had not refused. There is a real and immediate need for stronger communication around the definition, meaning, and reason for HIV discordance. The Ministry of Health’s HIV Counselling and Testing Toolkit for Coordinators and Supervisors (Uganda Ministry of Health 2005) and Bunnell et al. (2005) offer a wealth of useful guidance on messages to promote to discordant couples: Discordance is when one person is infected with HIV while the other partner is not. It is common in Uganda. In some cases, the couple enters into the relationship when they are already discordant. In other cases, it may be a result of being unfaithful. HIV is not transmitted at each exposure. The partner with HIV can pass the virus immediately to the uninfected partner or it may take many years. There are several issues that affect the risk of HIV transmission: - Condom use: Couples that use condoms correctly and consistently each time they have sex have a lower chance of transmitting the virus to the HIV negative person. 14 - Frequency of sex: Couples that have sex less often have fewer chances of spreading the virus to the HIV negative person. - Viral load: The amount of HIV virus in a person rises and falls depending on the overall health of the person and time since infection. A person with a higher viral load has a higher chance of transmitting the virus to their partner. However, you cannot know whether your partner’s viral load is high or low since it changes very often. - Other factors: Recent infection with HIV, presence of sexually transmitted infections, use of ARV. HIV discordance is NOT a sure sign of infidelity. In many cases, the couple enters their relationship when they are discordant. Less frequently couples become discordant due to outside partners or other exposure to HIV. A couple can remain HIV discordant for a long time. HIV is NOT transmitted on every exposure. HIV negative partners in discordant couples are at a very high risk of infection if the couple continues to have unsafe sex. HIV transmission within discordant couples CAN be prevented. Many couples have successfully learned to live with their discordance and the HIV positive partners have been able to prevent transmission to their HIV negative partners. Effective risk reduction options exist including: abstinence or reduced frequency of sex, condoms, STD diagnosis and treatment, mutual masturbation, and separation. No one is immune to HIV. The HIV negative person in a discordant couple is NOT immune. The ‘infectiousness’ of the HIV positive person – or the viral load – is much more important than any biologic characteristics of the HIV negative member of the couple. These messages clearly and effectively address the major issues highlighted above. There is cause to elaborate on how recent infection with HIV, presence of sexually transmitted infections, use of ARVs increase or decrease probability of transmission to the HIV negative partner. Further, health communicators need to take care to promote safer sex messages together alongside any “faithfulness” messages. Monogamy does not decrease HIV transmission risk within discordant relationships: “One of the difficulties with counseling HIV discordant couples is that the increased risk of infection comes from within stable relationship, rather than from outside sexual partners” (Malamba et al., 2005). Uganda’s policy for post-test counseling of discordant couples is to help the couple develop a plan to keep HIV negative partner uninfected, help the couple plan for ongoing care/support of HIV positive partner, and assess the likelihood of violence/abuse and develop strategies to avoid it (Uganda Ministry of Health 2005). Others have argued that enhanced couple counseling should focus on understanding discordance and coping with challenges and social pressures around childbearing; (Were et al. 2006). Others yet have put forth that discordant couples should receive rapid STD diagnosis and treatment, basic preventive care, and ART (Malamba et al. 2005). Discordant couples themselves have suggested that discordant couples receive individual as well as couple follow-up counseling, support groups, legal assistance, provision of condoms, income generation assistance, and educational seminars (Bunnell et al. 2005). Disclosure Intricately linked to the concepts of CHCT and discordance is the matter of disclosure. It is not HIV testing alone, but subsequent disclosure of HIV serostatus to one’s sexual partners that allows couples to make informed decisions about sexual behavior. Couple communication around HIV in general is low in Uganda – 83% of men and women age 15-49 have never discussed HIV with any sexual partner (Uganda Ministry of Health & ORC Macro 2006). Knowledge of partners’ HIV serostatus is even lower; an 15 estimated 89% of similarly aged men and women do not know the HIV status of any of their partners (ibid). Without this essential follow-step to HCT, the benefits of counseling and testing are limited. A quantitative and qualitative study conducted with HIV-infected TASO clients in Jinja provides the most comprehensive account of benefits and barriers to disclosure of HIV status in Uganda to date (King et al. 2008). Interestingly, 83% of survey respondents disclosed (to anybody) the same day that they received the test results. Men were most likely to disclose their HIV status to their sexual partners (27%) and brothers (21%), and women to their sisters (21%) and mothers (19%). Perhaps even more encouraging is the fact that 87% of both men and women said it was not difficult to disclose their status, suggesting that disclosure may not be as hard as typically thought. However, this TASO client population may not necessarily be representative of HIV-infected persons aware of their status in Uganda as a whole. The most common reasons for disclosure (to anyone) among both men and women were access to medical or home care (21% of women and 27% of men) and so that family would know their cause of death (18% of men and 17% of women). Other reasons included emotional/spiritual support (15% of men and 14% of women), s/he knew client was sick (14% of men and 15% of women), financial support (9% of men and 7% women), encourage others/partner to test (8% men, 4% women), both tested on the same day (7% men and 5% women), and other (8% men and 11% women). The low prominence of “encouraging others/partner to test” on this hierarchy is worthy of note for the purposes of this literature review. This does not appear to be a major motivating factor for disclosure of HIV status. In-depth interviews shed further light on outcomes of and perceived benefits and barriers to disclosure. Positive outcomes after disclosure (24) outweighed the negative (4). Motivations for disclosure were to: Avoid transmission to an uninfected partner or re-infection of an HIV positive partner. Risk reduction strategies included initiation of condom use, reduction in numbers of partners or frequency of sex, and abstinence. Receive increased caring or kindness by partner. Disclosing HIV status is viewed as a sign of trust and love. Facilitate partner HIV testing and subsequent access to are and counseling. Allow the discloser to openly seek care at health facilities when sick rather than having to get treatment secretly. Enable partners to care for them when they fall sick. Avoid partners finding out from someone else or on their own. Make known their cause of death, so that partners do not think they died from witchcraft or an unknown cause. Live longer as a result of fewer worries. Plan for the future of the family (e.g. children). Eliminate potential blame associated with the members of the couple who tested first. Only when prompted did participants comment on the benefits of disclosure for preventing unwanted pregnancies and PMTCT. The authors also draw attention to a fascinating irony: misconceptions on HIV prevalence and discordance seemed to result in increased motivation for HCT and disclosure: “Perceptions of high HIV prevalence and low levels of understanding on discordance appears to have facilitated disclosure as people believed their untested partners were HIV positive and should access medical care.” While most participants did not experience negative outcomes following disclosure, fear of these negative outcomes created substantial barriers for those who had not disclosed. Barriers included: 16 Fear of separation from sexual partners. This was true both for women, who worried about losing a source of income, and men, who were concerned about who will care for them and their children at home. Concern about which member of the couple was first infected. The partner who tests and discloses first was typically believed to be infected first. Fear of blame from one’s partner and extended family. Blame was often associated with infidelity and accusations that lead to stigma and discrimination. Anxiety around stigma and discrimination, especially when showing symptoms. Fear of physical abuse by their partner, especially for women. A qualitative study further found that one barrier to disclosure was the counselors telling clients that the results were confidential (Nsabagasani and Yoder 2006). Clients misunderstood this to mean that they could not tell anyone; it was their “secret.” Some men also felt that “women have weak hearts” and could not tolerate hearing that their husband tested HIV positive. Contrary to the commonly promoted model of direct face-to-face communication with sexual partners, King et al. found that indirect and assisted methods of disclosure are also quite prevalent, used by 27% and 18% of participants, respectively. Most respondents who communicated directly with partners did so as a result of declining health and visible symptoms. However, indirect methods such as telling stories about infected neighbors or influential community members, accounts of one’s own potentially HIV associated conditions, and showing or placing condoms, HIV related medications, or referral forms in a place where a partner could see them were also used to normalize issues, prepare listeners for the news, and initiate discussion around HIV serostatus. Friends or professionals were also used to prepare sexual partners for disclosure or to actually disclose to them, particularly for those fearful of their partners’ reactions. Another strategy was to suggest couple HCT after testing positive, rather than disclosing one’s own HIV status. The authors recommend that counselors openly assess appropriate methods of disclosure with clients during the post-test session, as direct communication is not the only or necessarily the best option for couples in Uganda. Counselors can assist in developing a personal disclosure plan that takes into account decisions about when and how to disclose, to whom and under what conditions. Involuntary disclosure is also a reality in Uganda. Not breastfeeding an infant, being seen buying or taking ARVs, or attending specialized clinics or clubs for PLHA may reveal a person’s HIV status (Nsabagasani and Yoder 2006). The response of the person disclosed to is also a key piece of the disclosure process. If the person disclosed to does not believe or accept the news as true, then disclosure does not have the desired effect. Actual and perceived health affects how news is received; individuals may refuse to believe those who appear healthy are HIV positive. Conversely, they may not believe those that appear ill, or who have lost a spouse to AIDS, can be HIV negative. Disclosure must involve mutual acknowledgement of the HIV test results and their implications (Nsabagasani and Yoder 2006). Target audiences The Ministry of Health encourages health programmers to consider certain factors when targeting groups for HCT promotion efforts (Uganda Ministry of Health 2005). Specifically, target audiences should have behaviours or characteristics that put them at risk of HIV, should not be benefiting from HCT services, should pose a barrier to others accessing HCT services, should live in an area the program is able to serve, and the infrastructure should be in place to appropriately deliver the services needed by this group. 17 As previously discussed, couples are an important target audience in Uganda. The literature also points to several other groups in need of targeted HCT interventions, including pregnant women, young people, children, and repeat testers. Pregnant women Effective short-course antiretroviral (ARV) regimens are available for the prevention of mother-to-child transmission of HIV (PMTCT). One of the critical first steps toward receipt of ARVs and a resultant 3050% reduction in HIV transmission is HIV testing of pregnant women during antenatal care (Bassett 2002). However, HIV testing rates for pregnant women in Uganda are very low, resulting in too many missed opportunities for PMTCT. This is due both to low rates of counseling and test offers on the part of health workers, as well as low acceptance of testing by pregnant women. In 2004-2005, 28% of women who gave birth in the two years preceding the survey were counseled on HIV during ANC (Uganda Ministry of Health & ORC Macro 2006). Of these, 6% were offered and received an HIV test, but only 2% were counseled, offered an HIV test, received the test and found out their results. Like has been seen with other audiences, these estimates are higher in the 2006 UDHS: 39% of pregnant women were counseled during ANC, and 18% were counseled, offered, accepted and received an HIV test, and received the results (Uganda Bureau of Statistics UBOS & Macro International Inc. 2007). A study assessing VCT uptake of first-time ANC attendees in Gulu District found that VCT was offered to 87% of all ANC attendees, 56% of which accepted (Fabiani et al. 2007). Mukaire et al. (2004) found that 38% of mothers of children 0-11 months were counseled to take an HIV test. Of those, 13% took the test. Mukaire et al. explored why these women fail to take an HIV test despite counseling. The most commonly cited reasons were that women were afraid of losing their marriage in the event of a positive result, and that “you die very fast due to frustration” when you know you are HIV positive. Other reasons were that women cannot be bothered, that there is no money for VCT (men only give money for illness, not investigations), fear of community gossip when one tests HIV positive, lack of time to undergo many medical procedures when pregnant, VCT is not provided at ANC centre/it is far and we don’t have money for transport, and the misconception that one must go with her partner. Men were also asked why they thought women do not test for HIV. Fear of the results and fear of losing their marriage were mentioned most frequently, followed by the fear of being seen by the public and “branded” as HIV positive, “after all, husbands have extra marital affairs,” fear that medical people kill HIV positive people, VCT sites are far, drugs are expensive, and that VCT is not rewarding (“you are just victimized”). Focus group discussions carried out with pregnant and breastfeeding women in Masaka District found that, in principle, women were willing to take an HIV test and be counseled in the event of pregnancy (Pool et al. 2001). The primary facilitator to testing was to save the baby. Barriers included the possible consequences of obtaining a positive HIV result, the stigma attached to obtaining a positive HIV result, that treatment will only benefit the infant, not the woman, “fear knowing that I am among the dead and I am to experience much suffering of AIDS,” and concerns over the reliability of test results. Women were also asked why they would or would not inform maternity staff of their status once tested. Again, the welfare of unborn child was central for almost all women; they wanted their baby to be saved. Women also felt that HIV is common these days, that it is easier to tell biomedical staff that TBAs, who are not necessarily trained in counseling, aware of importance of confidentiality, or equipped with proper necessary protection against infection from seropositive patients, and that maternity clinic staff would be more careful during delivery to protect the baby and themselves from becoming infected. 18 However, several women also felt there were reasons not to inform the maternity staff of one’s HIV positive status: maternity staff may mistreat you thinking you will infect them; AIDS is a shameful disease acquired through shameful activities; you’re already sick – why bother; lack of confidentiality; discrimination; and rumours that medical staff intentionally kill HIV positive people to reduce the spread of infection. The study also examined barriers to informing husbands of their status. Found to be much more concerning that telling the medical staff, consensus was men would “universally condemn the wives for ‘bringing the disease into the home,’ even if the woman was faithful and the husband knew himself to be promiscuous.” Furthermore, disclosure could lead to separation. Homsy et al. (2006) recognized the importance of male partners in the PMTCT and HCT processes by stressing their involvement in all information and counseling sessions. Furthermore, “women not accompanied by their partners were given a formal invitation letter signed by the hospital director and addressed to their partner asking them to visit the hospital’s new Family Health Programme to help them and their wife to prevent infections in their unborn baby.” During ANC, 96% (3591/3731) of pregnant women of unknown HIV status were tested, along with 97% (104/107) of male partners. While testing acceptance rates were high among the women and men, relatively few men attended ANC with their partners, and those that did typically wanted to test individually before decided whether to share their HIV status. In contrast, more men came with their partner to deliver, and were more willing to share their results. In the maternity ward, 86% (522/6050) of women were tested for HIV. Twenty-five percent of women with unknown HIV status presented with male partners here, and 98% of male partners accepted testing (176/180). Young People Young people are particularly vulnerable to HIV infection, and experience testing barriers different than adults due their age. According to the UHSBS (Uganda Ministry of Health & ORC Macro 2006), of those age 15-24 who have had sex in the last 12 months, 14.2% of young women and 10.8% of young men were tested for HIV and received the results in the last 12 months. The 2006 UDHS puts these estimates slightly higher, at 17.1% for females and 12.9% for males, using the same indicator (UBOS & Macro International Inc. 2007). In a presentation at the International HIV Counseling and Testing Workshop in Lusaka, Zambia, Coates et al. outlined the specialized needs of adolescents: the need for adolescent-friendly clinics, nonjudgmental counseling and nursing, guarantees of confidentiality, post-test support for issues of disclosure, marriage, and pregnancy, referrals for treatment, and ways to work with family (2008). Mukaire et al. (2004) looked in depth at young people’s risk perception, perceived obstacles to VCT, and perceived motivators for VCT in Uganda. Thirty-three percent of males and females age 15-24 perceived themselves to be at high risk of HIV infection, and the remaining 57% at low or no risk. Of those that felt they were at high risk, 36% said it was because they don’t trust their partner, 26% said it was because they were not married, and 25% said it was because they had no steady partner. Less commonly mentioned reasons were that they had many partners (17%), they don’t use condoms (16%), and because most people were infected (10%). Among those that perceived themselves to be at low/no risk, 25% said it was because they were abstaining, 19% said it was because they were not married, 17% said it was because they were still young, and 17% because they were still a virgin. Faithfulness (13%), condom use (13%), and being married (7%) were also mentioned. 19 The major barriers to VCT for young women were fear of the results and fear of news being spread about them. For young men, it was that VCT services are far and they do not have transport, and lack of knowledge on VCT. Both males and females thought that that bringing VCT services nearer and sensitizing communities about VCT would motivate them to go for VCT. While Uganda is challenged with a lack of youth friendly HCT services, youth-oriented strategies implemented by AIC and the Naguru Teenage Information and Health Center (NTIHC) have proven successful, and offer provide helpful direction on delivery of youth sensitive HCT (Conversation Notes, 2007; McCauley et al. 2004). Strategies employed by the sites included the establishment of a separate “youth corner” with its own gate behind the adult clinic, training of staff in the delivery of youth-friendly VCT services, reduction of the testing fee, provision of free reproductive health services, and promotion through posters, brochures, articles in a youth magazine, and radio programs. Young people’s main reason for testing was risk exposure. Other reasons included preparation for marriage, to protect a relationship in which a partner asked them to test, to plan for the future, and because their job/education/insurance required it. The most common reason for not testing was the fear one could not handle the situation if they tested positive, citing an inability to concentrate at school and work, depression, suicide, risky behavior, and increased stress as common or inevitable outcomes of receiving a positive result. Those with many sexual partners or a partner with AIDS believed that they were already HIV positive, and did not see the need to test, and those who had never had sex or unprotected sex felt they were safe and did not see the need to test. Fear of counselor criticism, distrust of the test results, and fear of stigma even upon entering the facility were other reasons for not receiving an HIV test. Exit interviews, in-depth interviews, and focus groups discussions with tested and untested youth revealed that youth were highly satisfied with the new youth-oriented services. At AIC and NTIHC, the most common answers to what the young people like best were friendly providers, warm reception and provider professionalism. Confidentiality as an aspect of the service that youth liked best doubled from 15% to 30% before and after the intervention. Young women were more likely to use the services than young men. Reasons for the gender disparity were that females are more vulnerable to infection (due to rape, intercourse with older men, or forced sex at younger ages); females are more likely to have a single partner and therefore a better chance of testing negative, whereas men may fear positive result; female youth more concerned about their lives and future; and more females get married in late teens and early 20s. Media, particularly the radio, and friends were the major source of information on VCT for both centers. In some cases, groups of friends went to get tested together. Simultaneously encouraging and discouraging was the increased level of demand for HCT by young people. Unable handle all the young clients who came, media outreach had to be discontinued to reduce demand. Children The MOH has expressed concern over the lack of child focused HIV interventions and facilities in Uganda, pointing out that children are often rejected by their families upon disclosure of HIV status, and citing a need for more child communication and life skills counseling (Conversation Notes 2007). The literature on HCT for children, however, is limited. In a study that systematically sought out family members of ART-eligible clients for HBHCT, none of the children had been tested for HIV previously (Were et al. 2006). HIV prevalence was 9.5% among children 0-5 years and 2.9% among 6-24 year olds. Among children whose mothers had died or were HIV positive, HIV prevalence was 17.7% for those 20 aged 0-5, 5.2% for those 6-10 years, and 1.7% for those 11-17. The authors suggest that it would be costeffective to limit child VCT to children whose mothers died or who are HIV infected. Repeat testers There is a small body of evidence that repeat VCT acceptors need to be targeted as a special high-risk group for HIV risk reduction interventions (Matovu et al. 2007). Of the 64% of individuals who accepted VCT in a Rakai study, 38% of these were repeat acceptors. These repeat acceptors were significantly more likely to report inconsistent condom use compared to non-acceptors of VCT, suggesting an increased risk of HIV infection. The authors recommend that risk-screening tools be designed for providers to identify HIV-negative testers who are most likely to engage in high-risk sexual practices, in order to tailor pre- and post-test messages to this group. Messages should emphasize this group’s continued vulnerability to the risk of HIV infection; the risk of HIV infection remains apparent as long as they and/or their sexual partner(s) continue to engage in high-risk behavior, regardless of the number of previous HIV negative tests one has had. A study that sought to estimate the cost effectiveness of various HCT strategies in Uganda found that the number of first-time testers ranged from 65% at stand-alone VCT sites, 79% for RCT, 90% for HBCT with 100% coverage, and 95% for HBHCT provided to household members of those receiving ART (Wamai et al 2008). HCT Campaigns in Uganda and Beyond Several African nations have previously or are currently implementing HCT demand generation campaigns. There are abundant lessons to be learned from their experiences. Uganda: Enhancing Couples HCT Uganda’s AIDS Information Center (AIC) has taken some innovative approaches toward enhancing couples HCT, starting with their inclusive definition of a couple (Byaruhanga 2008). AIC inclusively defines a couple as two people, a man and a women, who are or intend to have a sexual relationship, or a man/woman with multiple partners who are or intend to have a sexual relationship. One of AIC’s new strategies to encourage couples to test together is the promotion of “couples weeks,” a highly publicized event whereby couples are offered CHCT free of charge at AIC centres. Clients undergo risk assessment both as a couple and individually. Testing is done together, and couples receive their results together, enabling immediate partner notification, discussion of the results, and the opportunity to plan risk reduction strategies together. In AIC’s last promotion, 510 couples were offered CT, 3.7% of which were found discordant. Couples are further referred to couple clubs for ongoing support in the way of support groups, health education talks and films, discussions about disclosure and positive living, free on-going counseling at the facility and in the home, access to post-test services, free condoms, and IEC materials, and referrals to other organizations. The couple club emphasizes messages around the long term nature of HIV infections, the window period, sexual relations and condom use, effective couple communication, and the importance of keeping the HIV negative partner free from the infection. 21 Kenya: Impact of Logo Use and a Mass Media Campaign on the Utilization of VCT Services Between 2002 and 2005, PSI conducted a phased mass media campaign in Kenya to attract asymptomatic individuals to VCT sites (Marum 2008). Targeted toward urban areas with existing VCT sites, all four phases of the campaign were linked to a national VCT logo approved by the Government of Kenya National Task Force. The logo was used for site identification and to promote mobile VCT. Organizations were free to add their name to banners above the national logo. Phase I of the campaign introduced the logo and directly confronted the target audience’s fears and misconceptions. Materials asked questions such as “What do I do if I have HIV?”, “If I’m healthy, do I still need an HIV test?”, “If I find out I have HIV, will I die right away?”, and “If my baby is healthy, does this mean I don’t have HIV?” They also included a call to action: “Discuss this question at a VCT centre near you.” Phase II introduced popular entertainment figures, and added a “Chanuka” (“Get smart”) component. Phase III encouraged couples to be tested together through the use well known couples and the slogan “Chanukeni pamoja” (“Get smart together”). No mention of testing HIV positive was made is Phases II and III. Phase IV focused on the family, and added the slogan “Onyesha mapenzi yako,” meaning “Show your love.” Some materials directly addressed the issue of testing positive through messages such as, “I know I’m HIV positive and my husband still loves me.” An impact evaluation of the campaign found that the first and fourth phases, which directly mentioned HIV, were associated with a significant increase in VCT uptake. Therefore, HCT promotion should not shy away from the possibility of testing HIV positive. Lesotho: Know Your Status Campaign The Government of Lesotho launched the “Know Your Status” (KYS) Campaign on World AIDS Day 2005 (Lebona 2008). The campaign goal was to contribute to halting and reversing the spread of HIV in Lesotho, in the context of comprehensive HIV and AIDS prevention, treatment, care and support, and to provide high quality access to CT for all Basotho through a variety of models, including mobile, door to door, and facility based. The campaign’s vision was that “all people above the age of 12 years living in Lesotho will know their HIV status by the end of 2007, so that those who are negative remain negative and those who are positive live longer, productive lives.” KYS embraced a multisectoral approach; testing was conducted through TB clinics, PMTCT, private surgeries, stand alone sites, community outreach testing, home-based testing, workplace testing, out patient testing, and STI clinics. In collaboration with the MOH, PSI provided intensive assistance to KYS through its New Start VCT centers. KYS counselors were attached to New Start sites; New Start counselors served as mentors for KYS community counselors and supervised KYS counselors to ensure quality. New Start lab technicians provide quality assurance in testing component. PSI assisted in development of communication materials and provided logistical support (e.g. commodities, transport). The acceptance rate for HIV testing was over 92% by the end of December 2007, and there had been a five-fold increase in the number of people testing for HIV in the 3.5 years time period – up from 2.7% in 2004 to 19% in 2007. 22 Limited resources for planning, programming, implementation and coordination; lack of fully operational quality assurance/control, human resources, and IEC materials; and weak M&E systems presented the largest challenges. The Lesotho experience sheds light on the need for: Long term HCT planning, preferably a 3-5 year operational plan Effective fundraising and increased donor and government support On-going supervision and mentorship of facility based HCT providers and community-based counselors Increased and decentralized post-test services Strengthened quality assurance and control Implementation of one monitoring and evaluation system Standardisation of data management tools, data analysis, etc. Scale up community mobilisation, awareness creation and education Involvement and strengthening the support groups, especially for PLHA Botswana: Promotion of CHCT in Tebelopele’s VCT Centers Botswana’s promotion of CHCT through Tebelopele VCT centers encouraged married, pre-marital, presexual, non-marital sexual partners to test together because, “Couples that test together stay together” (Loeto et al. 2008). Mass media messages portrayed couples who asserted their shared knowledge of each other’s status, and posed the question to the audience, “We know our status. Do you?” February was deemed the “Month of Love.” Promotional items were distributed (t-shirts, chocolates, sweets, flowers for couples), and activities such as braais, exhibitions, dinners, raffles, and talk shows for couples conducted. Service delivery models received equal attention. Tebelopele developed a couple-specific HCT protocol, and rolled out CHCT counselor training to ensure that every center had a counselor trained in couple counseling. VCT centers were opened for couples on weekends and in the late evenings, and mobile caravans took services to the people. Tebelopele introduced ongoing supportive and prevention counseling for couples, especially discordant couples. Challenges included explaining discordance, the issue of child bearing among discordant couples, inadequate referral services for couples in general and discordant couples in particular, and adhering to risk reduction plans in the face of multiple concurrent partners. Tebelopele plans to continue special weekends for couples and couple specific activities throughout the year, as well as roll-out CHCT at marriage solemnization sessions and increase involvement in church couples activities, and scale up ongoing prevention counseling for discordant couples in all TVCT centers. Nigeria: Development of a National HCT Logo and Campaign Formative research in Nigeria found low knowledge of the existence and location of HCT centers, low knowledge of the benefits of knowing one’s HIV status, low knowledge of availability of care and treatment services for positives, stigmatization of facilities offering HIV/AIDS services, low levels of risk perception, and a lack of trust and confidence in service providers’ ability for confidentiality (Ngige 2008). In the absence of any national HCT demand creation response, stakeholders went through a one day meeting to review existing HCT responses and programs and agree on uniform strategy for HCT demand creation, then held a CT demand creation campaign workshop. Nigeria aimed to position HCT centers as 23 places for “confidence building and empowerment” and promote them as places where you can chat with trained, highly qualified “friends” (counselors) about life plans, especially as they relate to health and well-being. This included comprehensive information about HIV/AIDS. The outcome was a branded “Heart to Heart” logo, with the tagline, “We listen, we care.” Launched by the President, all USG implementing partners (IP) and federal government HCT sites were encouraged to utilize the logo in radio jingles, tv slots, and IEC materials. However, many service providers still saw the logo as a brand for originating IP and were reluctant to adopt it for regular use. The programmers therefore encourage a government-driven process that involves all key stakeholders at all stages of branding and logo development – including PLHA, developing strategies to ensure strict compliance in use of the brand and logo, and policy enactment on the use of the brand. Malawi: National Testing Week Malawi implemented National HCT Week for the first time in July 2006 and again in July 2007 as part of the national strategy for rapid scale up of HIV testing (Moses and Ngo’mango’ma 2008). The objectives of the free national HCT week were to mobilize all Malawians to go for HCT, to increase the visibility of HCT and encourage patronage of existing services, and to refer those tested (positive or negative) to appropriate support, care and/or preventive services. Malawi established Multisectoral National and District Task Forces, who were responsible for publicity and communication, procurement and distribution of HIV test kits and all required consumables, planning for full operation of all static and outreach HCT sites, quality assurance monitoring and supervision, and data collection. Client level data was captured using the National HCT Register, aggregated by district and sent to the HIV and AIDS unit for analysis. Communication activities took place at the national and district levels. HCT quality assurance received high priority. All counselors were certified and received an orientation package that emphasized compliance with standard HIV counseling process, HIV testing protocols and algorithms, and district HCT supervisors used standard counseling observation checklists and offered on-site support. Known positive and negative quality control serum samples were also distributed to all testing sites to monitor the performance of rapid test kits. The HCT week strategy was effective in increasing HCT; 20% and 28% of the total population were tested in 2005 and 2006 respectively. Over 10,000 previously undiagnosed HIV infected individuals were identified and referred for appropriate services in 2006, and over 15,000 clients in 2007. The national HCT week saw 28.9% repeat testers and 71.1% first-time testers; 5.6% tested as a couple, and 94.4% alone. Overwhelmed by high demand, the number tested nearly doubled the target in both campaigns (target of 50,000 in 2006 – 96,849 tested; target of 130,000 in 2007 and 186,631 tested). Despite the fact that about 65% of the sites were either outreach or mobile, extending further into rural areas, there were still several missed opportunities, such as trading centers and market places. Equitable distribution of test kits and other medical consumables presented a challenge – some sites ran out of supplies earlier than expected because of unexpected high demand. Further, supervision teams did not have the capacity to respond quickly to the needs of the HCT sites. Still, HCT week activities created momentum for increased public support for HCT services and normalization of HIV testing. Malawi recommended rapid expansion of HCT using innovative approaches such as HCT week campaigns for countries similarly affected as theirs, and further suggested 24 that HCT week campaigns be conducted annually. HCT weeks are also an opportunity to collect data for planning more responsive and innovative HCT services. South Africa: Leveraging the potential of the private sector Creative partnerships between the public and private sectors will be essential to achieve universal access to HCT (International HIV Counseling and Testing Workshop Report 2008). A partnership between New Start in South Africa and Levi’s, one of the country’s most popular clothing brands, proved highly successful in increased HCT uptake among young men in urban areas. Together with Levi’s, New Start South Africa established mobile CT sites in busy urban areas, including shopping malls, train and bus stations, churches, workplaces, and tertiary institutions (Mhazo et al. 2008). Levi’s played a large role in increasing the visibility around CT. They co-branded the New Start Mobile CT, provided New Start with branded tents, promoted New Start in the media and through its retail stores, helped New Start gain access to shopping malls, and linked New Start CT to their “Rage for the Revolution” concert. Clients who got tested a stood a chance of winning a ticket to the concert. All artists who performed at the concert had to have gone through New Start CT, and celebrities gave messages on the importance of knowing one’s HIV status during the event. More than three times as many people accessed HCT in 2007 compared to the year before. The location choices made CT highly visible, and individuals saw others being tested, the link to Levi’s, and the privacy that individual counseling tents offered as incentives. Partners and volunteers assisted in mobilization, and celebrities, TV and radio stations, community leaders, church leaders, and company directors endorsed HCT. Clients who tested received red “I know my status” rings. Challenges included weather, the allocation of mall space that lacked adequate visibility or was too small, and meeting the demand for CT (e.g. not enough tents, staff, vehicles). The program recommended partnering with a popular private sector brand that appeals to the target audience and can raise the profile of the campaign, offering CT in non-traditional but highly trafficked and visible locations for national testing days/weeks, and providing some sort of incentive for testing. Zambia and Rwanda: Couples Voluntary Counseling and Testing (CVCT) Centers In addition to the more traditional radio and print material strategies, the Zambia Emory HIV Research Project (ZEHRP) uses a variety of innovative CVCT strategies in order to increase CVCT uptake, including community sensitization talks, mobile weekend CVCT, CVCT talks at antenatal clinics and other forms of collaboration with stakeholders, as well as an Influential Network Agents (INAs) model, in which INAs are recruited by community leaders from health, religious, non-governmental and private sectors and are trained to invite couples for CVCT using their personally established community networks (Nwalika 2008). Zambia: Improving Client-Centered Counseling Messages As part of their process to update the National Counseling Curriculum, Zambia developed a series of materials that used a client-centered counseling approach in order to provide counselors with a a balance between structure and flexibility to help the client guide the process in meaningful ways (Beyer 2008). They developed “cheat sheets,” such as a post-testing counseling aid for a positive result that was used in training as well as to help new counselors. Client counseling request forms were used to help counselors and clients pre-determine topics to cover during the session. The forms asked clients to tick off any 25 options they wanted the counselor (e.g. PMTCT, STIs, male circumcision, supportive counseling in behavior change and risk reduction, family planning, nutrition counseling, drug and alcohol abuse, GBV, rape, ART, TB, safe water in my home, malaria). 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