|Tools for Evaluating HIV Voluntary Counselling and Testing (UNAIDS, 2000, 59 p.)|
It is only recently that Voluntary Counselling and Testing (VCT) services have been considered important as an entry point for prevention and care interventions for HIV/AIDS. Access to VCT services, however, remains limited and demand is often low. In many high-prevalence countries VCT is not widely available and people are often afraid of knowing their serostatus because there is little care and support available following testing. Furthermore, the quality and benefits of VCT, in particular with regard to confidentiality, counselling and access to clinical and social support, vary enormously.
Setting up VCT and ensuring a quality that will create demand is thus a considerable challenge. Building in self-assessments, monitoring and regular evaluation is an important tool to enhance the quality of VCT.
This document provides guidance on monitoring and evaluation of the various aspects of planning and implementing VCT. It provides tools for the evaluation of VCT as part of a national programme, as well as VCT services at specific institutions, independent sites and services for special groups, including community-based non-governmental organizations (NGOs). It includes monitoring and evaluation of VCT services associated with the prevention of mother-to-child transmission of HIV (MTCT) and tuberculosis preventive therapy (TBPT). This document revises and adapts previous draft guidelines1 2 3 4 and incorporates relevant operational research findings.
1 WHO draft report (Alfred Chingono). Protocol for setting and monitoring locally acceptable standards of counselling in relation to HIV diagnosis, 1994.
2 WHO draft report. Guidelines for implementing HIV/AIDS counselling, 1993.
3 NACO, India, draft report. Counselling policy and related aspects: National AIDS prevention and control policy, 1998.
4 Miller D, Casey K. Thailand Department of Mental Health HIV/AIDS counselling: participant information and casework audit form, 1998.
The context of evaluating VCT
The scope and challenges of VCT have changed over the past decade. At the outset VCT was primarily used to make a diagnosis of infection in symptomatic people to help medical management, and testing was often accompanied by minimal counselling. It was also promoted, in a piecemeal way, as a component of HIV prevention. There were reports of barriers to HIV testing because of the perceived stigma associated with a diagnosis, the lack of services and interventions available to those who tested seropositive5 and adverse consequences, particularly for women, following testing6. The development of antiretroviral (ARV) treatment for people with HIV, less costly interventions to reduce the incidence of HIV-associated infections (such as tuberculosis preventive therapy7 8 and cotrimoxazole prophylaxis9) and relatively cheap and feasible methods to prevent MTCT10 have made the need to promote VCT for people with asymptomatic disease more compelling. VCT services for young people are also being developed and services linked with family planning are becoming more widely available. The importance and cost-effectiveness of VCT in reducing HIV transmission are also now recognized11.
5 Baggaley R. Fear of knowing: why 9 in 10 couples refused HIV tests in Lusaka Zambia, Abstract number E.1266, 10th International Conference on AIDS and STDs in Africa, Abidjan, December 1997.
6 Temmerman M et al. The right not to know HIV-test results, Lancet, 1996, 345: 696-7.
7 Mwingwa A, Hosp M, Godfrey-Faussett P. Twice weekly tuberculosis preventive therapy in HIV infection in Zambia, AIDS, 1998, 12: 2447-2457.
8 WHO/UNAIDS. Policy statement on preventive therapy against tuberculosis in people living with HIV, document WHO/TB/98.255 UNAIDS/98.34, 1998.
9 Sassan-Morokro M et al. Significant reduction in mortality attributed to cotrimoxazole prophylaxis among HIV infected tuberculosis patients in Abidjan, Cd'Ivoire. Abstract 12461, presented at the 12th World AIDS Conference, Geneva, Switzerland, 1998.
10 Centers for Disease Control and Prevention. Administration of zidovudine during late pregnancy to prevent perinatal HIV transmission Thailand 1996-1998, MMWR, 1998, 47: 151-153.
11 Sweat M, Sangiwa G, Balmer D, HIV counselling and testing in Tanzania and Kenya is cost effective: Results for the voluntary counselling and testing study. Abstract no. 33277, presented at the 12th World AIDS Conference, Geneva, Switzerland, 1998.
HIV testing methods have also become simpler and cheaper, making testing a more feasible option in many developing countries12. The ease of HIV testing has also increased the role of the private sector in VCT in many developing as well as industrialized countries. The monitoring and evaluation of VCT services in the private sector brings additional challenges. VCT services have also been set up for vulnerable groups such as sex workers, prison populations, injecting drug users (IDUs) and refugees. These services need particularly careful monitoring to ensure such groups are not further marginalized and services are truly voluntary and confidential.
12 The importance of simple and rapid tests in HIV diagnostics: WHO recommendations. Weekly Epidemiological Record, October 1998, 73(42):321-328.
Studies evaluating VCT have concentrated on attempting to prove that VCT reduces incidence of HIV infection and thus contributes to prevention. This is because in planning and funding of VCT services it has been important to demonstrate that VCT works. Studies on the efficacy of VCT have largely concentrated on the role of VCT in risk reduction and changing sexual behaviour13 14 15. Monitoring of VCT has depended on reporting attendance, coverage and return rates. This document aims to provide guidelines to evaluate not only the implementation and effectiveness of VCT in HIV prevention, but also ways of assessing the acceptability and quality of services. It also aims to assess the effectiveness of VCT in enabling people with HIV to better accept and cope with their infection and access appropriate services.
13 Coates T, Collins C. Preventing HIV infection. Scientific American, July 1998, pages 96-97.
14 Sangiwa G et al. Voluntary HIV counselling and testing (VCT) reduces risk behaviour in developing countries: results from the multisite voluntary counselling and testing efficacy study. Abstract 33269 presented at the 12th World AIDS Conference, Geneva, Switzerland, 1998.
15 Allen S, Serufilira A, Gruber V. Pregnancy and contraceptive use among urban Rwandan women after HIV counselling and testing, Am J Public Health, 1993, 83: 705-710.
Counselling without testing
Despite reductions in the costs of HIV testing kits, VCT as a service will not be available in the near future for the majority of people in high-prevalence developing countries, especially for those living outside the capital cities. Sometimes testing services will be offered intermittently when test kits are available. However, even where testing is unavailable, there are often well-developed counselling services for people with symptomatic HIV and their families, and services providing HIV prevention counselling (such as counselling about safer sex in family planning clinics). This document, although primarily aimed at evaluating VCT services, will also include counselling services where testing is not available, as in many settings this is a much more common option.
Testing without counselling
As HIV testing becomes simpler to perform it is increasingly available, often without counselling or without adequate counselling or follow-up. Furthermore there are reports of coercion to test and testing which is not truly voluntary. Home testing and testing in the private sector pose particular challenges.
The majority of people attending VCT, whether they test positive or negative, will attend one or, at the most, two post-test counselling sessions. Studies have shown that even when further counselling sessions are offered or referral to specialized counselling services is available, many people do not want further counselling, at least not in the immediate future16. Some people do, however, require ongoing counselling and some will attend for further counselling in the 1-5 years following VCT. This often coincides with a crisis or change in personal circumstances. Following VCT, many people find other informal services or resources in the community to help them with their emotional needs. Church groups, family members, friends and traditional medical workers often provide emotional support. VCT services should therefore be flexible and either able to provide ongoing counselling or have close links with organizations providing this service. They should also be able to refer people to community organizations and spiritual/church groups when appropriate.
16 Baggaley R et al. Kara coping study interim report, Geneva, UNAIDS/WHO, 1998.
VCT is being carried out in various settings in developing and industrialized countries, depending on demands and resources.
· Free-standing VCT sites
· Hospital services
- NGO within the hospital
- integrated into general medical outpatient services in public hospitals
- as part of specialist medical care, e.g. sexually transmitted infections (STI) clinic, dermatology clinic, chest clinic, antenatal and family planning services
· VCT as entry into the continuum of care/home-based care (including palliative care services)
· Health centre urban or rural
· Private sector (clinics and hospitals)
· Workplace clinics
· Referral sites for legal requirements, pre-employment, pre-travel, pre-marital
· Youth health services and school health services
· Health services for vulnerable groups
- sex workers
- prison populations
- men who have sex with men (MSM)
- children, orphans and street kids
· Self testing/home testing
· Attached to research project/pilot project
- associated with antenatal services and interventions
- associated with tuberculosis (TB) services and TB preventive therapy
· Blood transfusion services
Different models of VCT are available in many different settings in developing and industrialized countries. There is no single preferred model and the choice of VCT service will depend on the needs of the community, HIV seroprevalence, maturity of the epidemic, attitudes towards HIV, political and community commitment to VCT, available financing and existing VCT resources.