HIV Counseling and Testing in Uganda:
A Literature Review
Prepared by Jennifer Orkis
For HCP Uganda
June 2008
1
Table of Contents
Table of Contents
Acronyms
Introduction
Methodology
Context
HCP Policy
HCT Coverage
HIV Counseling and Testing
Knowledge
Uptake
Barriers to HCT
Facilitators to HCT
Couples HCT
Benefits of CHCT
Barriers to CHCT
Messages Promoting CHCT
Interventions for CHCT
Premarital CHCT
Cost Effectiveness of CHCT
Rights-Based HCT
Risk Reduction Counseling
Discordance
Disclosure
Target audiences
Pregnant women
Young People
Children
Repeat testers
HCT Campaigns in Uganda and Beyond
Uganda: Enhancing Couples HCT
Kenya: Impact of Logo Use and a Mass Media Campaign on the Utilization of VCT Services
Lesotho: Know Your Status Campaign
Botswana: Promotion of CHCT in Tebelopele’s VCT Centers
Nigeria: Development of a National HCT Logo and Campaign
Malawi: National Testing Week
South Africa: Leveraging the potential of the private sector
Zambia and Rwanda: Couples Voluntary Counseling and Testing (CVCT) Centers
Zambia: Improving Client-Centered Counseling Messages
Conclusion
References
Acronyms
AICAIDSInformationCenter
AIDSAcquired Immunodeficiency Syndrome
ARVAntiretroviral
ARTAntiretroviral Therapy
CHCTCouples HIV Counseling and Testing
HBHCTHome Based HIV Counseling and Testing
HCTHIV Counseling and Testing
HIVHuman Immunodeficiency Virus
MOHMinistry of Health
NTIHCNaguru Teenage Information and HealthCenter
PEPPost Exposure Prophylaxis
PEPFARPresident’s Emergency Plan for AIDS Relief
PMTCTPrevention of Mother to Child Transmission of HIV
RCTRoutine Counseling and Testing
TASOThe AIDS Service Organization
UBOSUganda Bureau of Statistics
UDHSUganda Demographic and Health Survey
UHSBSUgandaHIV/AIDS Sero-Behavioural Survey
VCTVoluntary Counseling and Testing
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 partnerscan 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 evidenceindicates 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 forHCT. The present literature review seeks to inform this process, and as such addresses the currentcontext 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 peer-reviewed 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.
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 UgandaNational 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 Ugandahave 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 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 hadeverbeen 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 highin 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).
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.
1
Theme / Barrier / ReferencesLack of Knowledge / Lack of knowledge of HIV counseling and testing / UHSBS 2004-2005
Mukaire 2004
Do not know where to get an HIV test / UHSBS 2004-2005
Mukaire 2004
Not sure when/where VCT outreaches will be conducted / Mukaire 2004
Never thought of testing / Wanyenze 2006
Misconceptions / When found positive, you are injected with drugs that may kill you / Mukaire 2004
Printed lists of names and test results are pinned on the wall of the counseling office. / Wolff 2005
Tests are not valid; some who publicly claim to test negative for HIV fall sick or die shortly afterwards / Wolff 2005
Counselors will change positive test result to a negative one for a sufficient sum of money / Wolff 2005
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) / Wolff 2005
Low Risk Perception / Lack of perceived risk of HIV infection / UHSBS 2004-2005
Mukaire 2004
Wanyenze 2006
Were 2006
Nakanjako 2007
No previous illness / Wanyenze 2006
Have been faithful/not sexually active / Wanyenze 2006
Fear / Fear of results/knowing one’s status / Mukaire 2004
Were 2006
Nakanjako 2007
Wolff 2005
Fear of consequences of test results (reaction of spouses, partners, family members, community members) / Mukaire 2004
Wolff 2005
Nakanjako 2007
Fears of inadvertent disclosure or false rumours starting from being seen at the counseling offices / Wolff 2005
Fear of “emotional transparency” that would allow others to guess their status after learning of their result / Wolff 2005
Fear that worry about the future would hasten poverty and death by accelerating the course of the disease / Wolff 2005
Lack of motivation/time / Unconcerned, not a priority, can’t be bothered / UHSBS 2004-2005
Mukaire 2004
Wolff 2005
Don’t want to know if have the virus / UHSBS 2004-2005
No incentives (e.g. soap, food) / Mukaire 2004
Difficult to find time to leave the home and maintain standards of dress and appearance / Wolff 2005
Fatalism / Individuals assume they are already HIV positive – why test? / Mukaire 2004
Wolff 2005
Economic Barriers / Test costs too much/lack of money/lack of access to free testing / UHSBS 2004-2005
Mukaire 2004
Wanyenze 2006
Nakanjako 2006
Structural/Service Barriers / Testing site is too far/no transport / UHSBS 2004-2005
Mukaire 2004
Were 2006
Negative attitude of health workers toward client / Mukaire 2004
Can’t get treatment if HIV positive / UHSBS
Mukaire 2004
Long, unpredictable waiting times to get results in rural areas / Wolf 2005
Afraid results are no longer valid by the time they become available / Wolf 2005
Do not trust health workers to give true results / Mukaire 2004
Do not trust instruments used for testing (may give false results) / Mukaire 2004
Gender Barriers / Husbands won’t allow their wives to go for VCT / Mukaire 2004
Readiness Barriers / Need to consult sexual partner prior to HIV testing / Nakanjako 2007
Need for more time to think about it / Nakanjako 2007
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.