Healthlink Worldwide

Treatment literacy: empowering communities to access AIDS treatment

As access to anti-retroviral therapies (ARTs) improves in developing countries, information and communication about treatment become ever more important.

With effective communication communities are better informed about drugs, improve their understanding about what ARTs are, why they are needed and what they can and cannot do.

Healthlink Worldwide’s latest findings paper Treatment literacy: empowering communities to access AIDS treatment examines the challenges of communicating effectively about ARTs and highlights some of the latest research in this area.

Issues of accessing ARTs are complex. They range from collaborating on global funding, ensuring the sustainability and reliability of access to medication, improving support to diagnosis, strengthening health systems, and monitoring adherence and drug resistance. Engaging the public sector through community based organisations and the private sector through the workplace is also critical to expand coverage and impact of community based treatment. The report’s author, Alison Dunn says: “The landscape is complex and it is easy to overlook the vital role that communication plays, but research shows that information and communication are essential elements to achieving universal access to ARTs.”

The Findings paper focuses on the following key points:

• Communication around ARTs is required for an effective and comprehensive response to HIV and AIDS that includes and makes linkages between prevention, treatment, care and support.
• Treatment literacy leads to improved health outcomes, better adherence to drug regimes and higher uptake of voluntary counselling and testing services.
• The process of developing treatment literacy materials is important and should include people living with HIV and AIDS and those taking ART and their guardians and supporters who can either enable or obstruct adherence.
• Communities need to be prepared to support their members taking ART. This means reducing stigma and discrimination and dispelling myths.
• Community care and treatment responses should be recognised as an important component of greater access to treatment.

All the key points advocate putting people with HIV at the centre of care. By doing so, individuals and their care-givers gain knowledge and skills to manage their health, while myths, fears and misconceptions about HIV and AIDS are reduced. The widely known Treatment Action Campaign uses this approach. Its trained practitioners use personal stories and experiences alongside medical and scientific knowledge to increase treatment literacy among people with HIV and their supporters.

The report says the challenge for many local organisations providing effective treatment literacy services is that people have to have a basic understanding of HIV before they can understand ART and with the expansion of access to ART information changes fast. The paper argues that at a community level the introduction of ART means more than ensuring individuals and families are able to support and care for people taking anti-retroviral drugs. Entire communities with diverse members, some of whom are marginalised or minority groups should be able to understand HIV and AIDS and what it means to start and adhere to ART. Close work is also required to ensure that environments are not hostile and the different needs of community members are taken into account.

The Findings paper highlights a range of tools and channels which can be used to engage and prepare communities and a specially prepared Key list of resources from Source – the International Information Support Centre – gives access to further information about treatment literacy, effective communication and preparing communities on ARTs.

Download the Treatment Literacy Findings paper (PDF 8 pages, 483 KB)

A Key list of resources on ART and preparing communities is available on the Source website