This 6-page paper focuses on the role of communication in ensuring that individuals and communities around the world understand what anti-retroviral therapy (ART) is, and what the scope of its role is in the context of AIDS treatment/care. That is, author Allison Dunn here describes treatment literacy as part of an effective and comprehensive response to HIV and AIDS, and shares concrete communication-based strategies for fostering it, urging that learning from community responses is crucial.

According to Healthlink Worldwide, "Engaging with individuals and communities effectively around ART can improve health outcomes, contribute to greater uptake of voluntary counselling and testing services, facilitate better adherence and lead to a greater belief in the effectiveness of ART." However, research (by the International HIV/AIDS Alliance) shows that an increased quantity and quality of resources and capacity is needed if communities can fully understand and support ART. A focus on the centrality of information and communication is characterised here as key in confronting various challenges to accessing AIDS treatment, such as stigma and discrimination and misinformation. As one example, she cites a study carried out in Tanzania which found that overcoming barriers to adherence involved educating patients through leaflets, seminars, counselling sessions, television, and radio. The key seems to be drawing on a variety of approaches, depending on the context; research from Zambia has indicated that restricting ART information sharing to verbal communication between patients and health care workers, some of whom were lacking knowledge and training, could be limiting.

Dunn proceeds to highlight some specific strategies that have been drawn upon to foster treatment literacy in particular programmes around the world. Participation is the core approach used in such initiatives as the Treatment Action Campaign (TAC), which Dunn describes as putting people with HIV at the centre of care in an effort to give individuals and their caregivers knowledge and skills to manage their health and to reduce myths, fears and misconceptions about HIV and AIDS. As part of TAC, trained treatment literacy practitioners use personal stories and experiences combined with medical and scientific knowledge to increase treatment literacy, drawing on a variety of activities and materials such as:

• community education/awareness campaigns that use posters, videos, booklets, brochures or pamphlets, and t-shirts
• curricula for health care providers, for people on treatment, and for peer educators
• teaching aids such as health diaries, calendars, and charts, as well as broadcast media programmes
• instructional materials to guide participatory discussions, role plays, and interactive exercises
• support groups and networks of people living with HIV/AIDS (PLWHA)

The key, according to Dunn, is that in facilitating the exchange of ART information, PLWHA should be encouraged and enabled to fully participate in the design of treatment literacy activities and materials - helping ensure that they are appropriate, relevant, and meet people's actual needs within the particular context. This process might lead to adapting materials for local use by, say, drawing on images and examples that many different groups within a particular community - including minority groups and non-literate people (e.g., children) - can engage with and relate to.

Along these lines, Dunn stresses the importance of empowering entire communities (not just PLWHA) and going beyond the provision of appropriate information to fully involve a constellation of parties to ensure broad awareness of, and support for, ART. The author draws on concrete research and examples to illustrate the ways in which a range of communication tools and channels can be used to foster adherence to ART by building skills in problem solving, overcoming stigma and discrimination, and preparing communities (through processes carried out with and by community members) for the introduction and sustainability of ART in their particular contexts. Among the many strategies mentioned are: working with local leaders; conducting community education through roadside coffee shops and internet cafes; working through church programmes and traditional healers; using drama activities to encourage voluntary counselling and testing (VCT), as well as "post-test" clubs to support people following VCT; and use of mass media. Drawing on the power of partnership - e.g., by facilitating collaboration between community-based organisations (CBOs) and the public sector, and supporting civil society in its efforts to spur broad local involvement - is described here as key to making these strategies work in practice.

In short, fostering community involvement, guided by the various methods and illustrations shared here, is advanced as a promising strategy for raising awareness about, supporting adherence to, and sparking action around ART as part of an effective response to HIV/AIDS.

Editor's note: A list of key organisations, articles, newsletters, books and websites on the topic of ARTs and treatment literacy is available from Source International Information Support Centre; click here for access.

Click here to access a related peer-reviewed summary on the Health e Communication website, and to participate in peer review.