Background Document on Literacy and Health

2.4 Discrimination and learner/patient empowerment

One example of alternative forms of health education stands out in the American literature: the participatory action research facilitated by Marcia Hohn in Lynn, Massachusetts (1998). Massachusetts is a leader among the states in adult education and health education. In this project, within the context of an adult literacy centre called Operation Bootstrap, a multicultural team of literacy students facilitated by Hohn worked collectively through participatory processes to explore and learn about two major health issues. They identified three major problems with health education. First, print materials about health topics were too difficult. Second, even if the materials were written at appropriate literacy levels, they were insufficient by themselves in promoting active engagement likely to result in behaviour change. Finally, many health educators were ill prepared to do effective teaching with low-literate audiences.

One of the major issues identified by these students was discrimination, defined as the level of fears about being poorly treated in a social sense at health care facilities and not knowing their rights and responsibilities in seeking medical care (Hohn, 1998, p.48). According to Hohn, there is a fundamental need to provide a psychologically safe atmosphere for health teaching and learning where people's questions are respected and addressed. Inherent to this safe environment is the need to respect different cultural perspectives and different belief systems. Students must feel comfortable to tell their stories, ask questions and even challenge information. Low-literate groups must understand their rights and responsibilities in the health care system, and how to negotiate within this system.

While health care is significantly different in the United States and in Canada, some of these concerns apply to Canada. Hard-to-reach patients in Canada can also have difficulties navigating the health care system and can, in some instances, feel they are poorly treated. For many different reasons, their questions are often not being answered (possibly they do not ask the questions) and they do not have the self-confidence to go a step further and find the answers. These problems are multiplied in the case of patients from ethno-cultural communities who face language and cultural barriers.

Unlike the majority of available studies and research on health literacy, the Hohn study focused on the empowerment of low-literate individuals. Participatory health education goes beyond having a patient understand information on a disease or taking prescribed medication. The goal is to empower users of the health care system so they may gain control over their own lives in the context of participating with others to change their social and political realities.

Empowerment education allows people in group efforts to identify their own problems, critically analyze the cultural and socio-economic roots of the problems and develop strategies to effect positive changes in their lives and in their communities (Wallerstein, 1994). This approach is inspired by the work of Brazilian educator Paulo Freire. According to Wallerstein, field research has documented better physical and behavioural health outcomes from increasing participation and control in one's life (Wallerstein, 1994). People who live with low literacy, poverty and health problems may more frequently feel disempowered by attitudes and actions of people, groups and institutions that hold power in our society. Empowerment becomes the strategy to address the lack of control that characterized individuals in positions of perceived and actual powerlessness. This is achieved through greater participation in community actions, a stronger sense of community, vibrant social networks, promoting a belief in people that they can control their environment and through actual socio-economic changes.

According to Hohn, an empowering education process must include:

1. direct teaching by peers;
2. a safe and respectful atmosphere to ask questions and talk culture;
3. creative and inclusive methods.

The teaching and learning approaches need to be supported by simple, easy-to-read materials. The whole process must start from the reality of learners' lives, their issues, problems, challenges, cultures and aspirations. Involving participants in the development of learning materials is often used as a strategy. The final product reflects both the reality and the language of people in the community.

Hohn believes that learning must take place in three realms: the physical, the cognitive and the psychological-emotional, looking at the whole person. Students learn about their bodies and about health issues. They develop greater self-confidence and emotional strength. Students learn how their reality fits into the larger social context. Health as a topic provides tremendous energy, motivation, and a commitment for learning and improving literacy skills. Learning programs like this one can serve both the health and the language-literacy needs of adult literacy students in a process that is mutually reinforcing. (Hohn, 1998).

A thoughtful Canadian example of a participatory health education process comes from the Learning Centre Literacy Association based in Edmonton, Alberta. Following a series of participatory health literacy education workshops for women, the Centre produced Learning for Our Health: A resource for participatory literacy and health education (1998). This resource was written by and for women with the objective of empowering women. It puts participatory education in a larger context and analyses the links between health and literacy. This resource was extensively field-tested and is clear and well developed. A series of ten workshop plans are included. The topics are: stress, saying no, exercise, healthy weight, eating for our health, menopause, anger, STDs, living healthy on a low budget and living with welfare.

This kind of change linked to individual and community empowerment takes time. The student action health team of Operation Bootstrap started its work in 1994 and the intense involvement of Ms. Hohn lasted approximately two years. The experience of the women in literacy class in Edmonton showed that it took almost 20 weeks before some women began to speak with comfort and confidence (Norton and Campbell, 1998, p.16).