Current Research and Good Practice in HIV and AIDS Treatment Education

"As antiretroviral treatment (ART) is scaled up, there is a growing realisation among programme managers and donors that merely providing ART and training health providers is not sufficient and that unless efforts are made to engage communities and individuals to improve their knowledge and understanding of HIV, AIDS, and ART, programmes will fall far short of attaining universal access to treatment."

This 53-page UNESCO report describes current research and field experiences related to HIV and AIDS treatment education undertaken with individuals and communities in Kenya, South Africa, Thailand, Uganda, and Zambia. The paper, which was written for the United Nations Educational, Scientific, and Cultural Organization (UNESCO) and the World Health Organization (WHO) for presentation at a Technical Consultation in Paris, France (November 22-23 2005), also discusses a treatment literacy intervention evaluated in the United States. It highlights some of the strategies shaping, and successes of, these programmes and identifies the gaps and problems that have emerged.

As the authors explain, specific interventions have been introduced at the individual level to support treatment adherence, such as peer support, treatment "buddies", visits by community health workers, and comprehensive counselling and adherence support for patients receiving ART. In addition, community education and preparedness interventions have been developed, and draw on a number of different strategies and activities. For example, in South Africa, the Treatment Action Campaign (TAC)'s community mobilisation and treatment literacy programme "Project Ulwazi"(meaning "knowledge") draws on a cadre of volunteers to reach the community with information via high schools, public sector health clinics, shopping centres, workplaces, churches, the media, and other fora. The programme also uses HIV-positive "treatment supporters" to assist persons with HIV who are receiving ART. TASO in Uganda uses HIV-positive peers, several of whom are on ART, and community health workers, known as Field Health Officers (FHOs), to conduct community outreach and education. In Zambia, the ACER project uses a variety of community resources to conduct treatment education such as traditional healers, church groups, networks of people living with HIV and community health workers (CHWs). Street plays, and radio and television media, are some of the other approaches that have been drawn upon in these programmes.

As explained here, ART programmes are finding that CHWs and people living with HIV/AIDS (PLWHA) are useful resources to help mitigate the shortage of health workers by providing outreach support near patients' homes, and - in the case of peers - serving as role models for others infected with HIV. Several examples are cited to illustrate this strategy, such as Haiti's Equity Initiative's use of CHWs (or, "Accompagnateurs") in its tuberculosis (TB) and HIV directly observed treatment (DOT) programme. Also, in Thailand, the national ART programme is using peer educators to support people living with HIV on ART in the northern provinces of the country; it has been found that this approach not only benefits clients in the programme but also benefits the peers themselves by improving their self-confidence and self-esteem, and providing them with a source of income.

While research to assess the effectiveness of treatment education is limited, the authors present some evidence indicating positive associations between exposure to treatment education and various outcomes such as HIV- and treatment-related knowledge, self-efficacy, adherence to treatment, immunological and virological outcomes, health-related quality of life, internalised or perceived stigma, and practice of preventive behaviours. That said, there are various gaps and challenges that should be considered when developing treatment education initiatives, the authors claim. They include:

• Reaching marginalised groups and key populations, such as men who have sex with men (MSM) and injecting drug users (IDUs).
• Offering treatment education in educational institutions - According to research shared here, some programme managers felt that community initiatives providing HIV and treatment education in schools were limited in their reach; the need for a standard curriculum across a country (one that also included universities and vocational institutions), was mentioned.
• Expanding treatment education in the private sector - As explained here, private sector health facilities, employer-based health programmes, and workplace interventions are often left out of HIV education and awareness programmes due to problems of access.
• Improving coordination among agencies that provide HIV and treatment education in the community - It was found that there are often several agencies operating within a given community; programme managers stressed that there is frequently very little coordination among them, giving rise to inconsistent and conflicting education messages being sent out to the field.
• Developing and disseminating treatment literacy materials - Programme managers noted shortages of literacy materials and funds to reprint materials, indicating that programmes also lack resources to translate literacy materials into local languages. Non-availability of age-appropriate materials was also mentioned as a gap.
• Maintaining ongoing services while expanding into new areas - The need for repetition and reinforcement of messages within the same community raises the issue of resources.
• Extending ART treatment literacy and education to other HIV prevention services, such as those for voluntary counselling and testing (VCT) and prevention of mother-to-child transmission (PMTCT) of HIV.
• Addressing gender gaps in HIV knowledge and service utilisation - Research data from many African countries show that women tend to have less HIV prevention knowledge than men. In some communities, women may be more likely to seek treatment or take advantage of support services, such as post-test clubs or peer support; therefore, programmes may need to reach out more to men, according to the resource.
• Meeting needs beyond providing information about HIV and treatment, such as by providing a complete package of care that takes into account the economic and nutritional needs of HIV-positive persons on ART.

In conclusion, "treatment education for individuals and communities is an important component of HIV and AIDS care programmes. Several successful strategies are being implemented across countries. There is a need to document and disseminate these experiences to maximise replication and scale up at other sites."