Table 1.

Definitions of “literacy” within the health arena

#	Illustrative quote
Treatment literacy
1	This concept [treatment literacy] denotes not only the capacity of infected persons to use ARVs effectively but also to “interpret information about HIV/AIDS prevention, testing and care” and “prevent HIV/AIDS-related stigma and discrimination” [15].
2	The treatment literacy model, developed by the Treatment Action Campaign (TAC) in South Africa, can be useful for activist groups in working with health professionals… TAC used a “right to health” approach to HIV through a combination of protest, popular mobilisation, and legal action [16].
3	They [TAC] emphasised building capacity among affected people, prioritising those who were disadvantaged, and through the cornerstone concept of treatment literacy. HIV education materials and methods were developed, including on the benefits and side-effects of treatment, embedded in the science of medicine, the political context, human rights, equity of access to health care, and the duties of governments [16].
4	From the outset it [TAC] sought to build a capacity to pursue human rights entitlements directly among the poor and to catalyse a political movement for health. Part of the rationale for this was a distrust of the professional “AIDS and human rights movement,” which often seems part of the global industry spawned by the epidemic, articulate but ineffective [17].
5	Treatment literacy is not taught in a neutral or bio-medical fashion. Information about the science of medicine and health is linked to political science, human rights, equality, and the positive duties on the state [17].
6	Treatment literacy is the base for both self-help and social mobilization. Armed with proper knowledge about HIV, poor people can become their own advocates, personally and socially empowered [17].
7	UNESCO/WHO have defined treatment education as “… forming the bridge between the provision of treatment and the preparation and involvement of people and communities in comprehensive responses to HIV and AIDS” [18].
8	The aim of treatment literacy… was to provide knowledge and skills to understand and manage (to the best of their capacities) their disease, treatment and broader health issues, and to equip them with tools to take some responsibility for their own health [18].
9	Treatment education targeted to individuals and communities encompasses a wide range of ART-related issues, including how the medication should be taken, the importance of adhering to prescribed medication regimens, treatment side effects and how to manage them, interpreting CD4 counts, and how to access local ART services. Treatment education aims to empower persons with HIV to navigate the health system, learn their serostatus, access care, effectively manage ART, and practice HIV transmission-related protective behaviours. In the community, treatment education raises awareness about HIV and AIDS and the effectiveness of ART; encourages people to know their HIV status; and provides information on the availability of VCT and ART, eligibility criteria for accessing ART, and the management of ART. Treatment education also mobilises action to combat AIDS related stigma and discrimination, which act as barriers to accessing HIV counselling and testing – a key entry point for care and treatment, and as barriers to HIV prevention programmes [19].
10	Treatment Preparedness is the term that refers to a person's readiness to begin antiretroviral treatment. It includes “treatment literacy” or having the appropriate knowledge about HIV and the medicines used to treat it, as well as “empowerment” or the meaningful involvement of PLWHA in decisions regarding their care, including the distribution of resources [20].
Health literacy
11	Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions [21].
12	Health literacy has been defined as the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Health Literacy means more than being able to read pamphlets and successfully make appointments. By improving people's access to health information and their capacity to use it effectively, health literacy is critical to empowerment [22].
13	Health Literacy … addresses the environmental, political and social factors that determine health. Health education, in this more comprehensive understanding, aims to influence not only individual lifestyle decisions, but also raises awareness of the determinants of health, and encourages individual and collective actions which may lead to a modification of these determinants. Health education is achieved therefore, through … interaction, participation and critical analysis [22].
14	Health literacy affects people's ability to: Navigate the healthcare system, including filling out complex forms and locating providers and services; share personal information, such as health history, with providers; engage in self-care and chronic-disease management; and understand mathematical concepts such as probability and risk [23].
15	Health literacy incorporates a range of abilities: reading, comprehending, and analyzing information; decoding instructions, symbols, charts, and diagrams; weighing risks and benefits; and, ultimately, making decisions and taking action [24].
Prevention literacy
16	… In addition to increasing access to treatment, research towards developing a prevention vaccine must be pursued. Innovative models of care were needed to increase retention and improve HIV prevention literacy [25].
17	The Science and Treatment College (STC) seeks to increase the HIV/AIDS science, treatment and prevention literacy of Black Americans in an effort to improve their ability to protect themselves from infection, equip those who are already infected from infecting others, and enhance the community's position as a whole to impact perceptions of and policy regarding HIV/AIDS and health in Black communities [26].
18	Taking structural and environmental challenges into account, some scholars have called for community engagement through “prevention literacy” programs, to address these structural and environmental conditions and to advance the acceptance of and adherence to new modalities of biomedical prevention. Prevention literacy aspires to generate critical knowledge and also ownership of prevention modalities [27].
19	These studies suggest that targeted HIV-prevention interventions can effect improvement for this vulnerable population when programs remain sensitive to gender and cultural differences and expectations, and address the social and economic inequalities that make women vulnerable. Solving these problems on a larger economic scale will require institutional participation and political support for women's equity, HIV prevention literacy, and a broader HIV-prevention agenda [28].
20	We urge international institutions, national governments, and community activists to work together to build demand for HIV prevention: Develop a broad HIV-prevention movement, grounded in the strengthening of natural constituencies for HIV prevention in the communities of those who are most vulnerable and affected; support HIV-prevention literacy at all levels, linked to the successful scaling up of treatment literacy; identify and promote bold advocates and public models for changing harmful social, behavioural, and legal norms and practices; [and] create an active coalition between the movement for HIV prevention and the movement of people living with HIV/AIDS, and link this coalition with other motors of social change, including treatment activists, entrepreneurs, rights activists, and women's and youth activists [11].
21	Treatment and prevention literacy is a community-based activity that helps people learn factual evidence-based information in a non-threatening manner, thus addressing stigma and discrimination, as well as myths about these issues in the community. It is important to engage the community to dispel myths and support changes in how cultures approach prevention so that your health centre can provide effective services [29].