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Literacy, Health, and Health Literacy: State Policy Considerations

Literacy, Health, and Health Literacy: State Policy Considerations

by Marcia Drew Hohn
Both the literacy and health care worlds are increasingly coming to see the connection between low literacy and poor health as an issue of social and economic justice, and the two fields are starting to address the problem together. Across the nation, a slow but growing movement is leading to initiatives and programs that use an integrated literacy and health approach. Focus on Basics asked me to review the policies and supports being put into place by state adult basic education (ABE) policy-makers that will enable the ABE field to address this national concern. In this article, I provide an overview of five strategies worth considering when contemplating how to engage with literacy and health issues. The strategies were drawn from a series of interviews with Bob Bickerton, Director of Adult and Community Learning Services in Massachusetts; Cheryl Keenan, Director of Adult Basic and Literacy Education in Pennsylvania; Kim Lee, Director of Assessment, Evaluation, and GED at the Georgia Department of Education; Matthew Scelza, Programs and Advocacy Director at California Literacy; and Yvonne Thayer, Director of Adult Education and Literacy in Virginia, all of whom are responsible for initiating literacy and health activities in their respective states. They were chosen for the diversity of their approaches. I also draw from my work in Massachusetts over the last decade as a researcher, practitioner, and advocate in integrating literacy and health education. By no means was I able to interview all the states, programs, and individuals who have been, and currently are, doing meaningful work in the literacy and health arena. The recounting of selected experiences does, however, provide a broad array of ideas for policy and process.

In this article, the term ABE (adult basic education) is used interchangeably with adult literacy and is understood to include English for speakers of other languages, General Educational Development (GED) programs, the broad array of basic education from beginning literacy through pre-GED, and specialty programs such as Family Literacy and Correctional Education.
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Health Literacy is understood to mean the ability to obtain, interpret, and understand basic health information as well as the ability to apply skills to health situations at home, at work, and in the community (Rudd, 2000).

Leveraging Interagency Cooperation

Cheryl Keenan, director of Adult Basic and Literacy Education in Pennsylvania, explains that 1996 legislation in her state created an Interagency Coordinating Council (ICC), an advisory body charged with improving the delivery and outcomes of basic skill services across four key state agencies. In its first full report, the ICC connected adult literacy to several major policy priorities in Pennsylvania, including economic and workforce development, welfare reform, and school improvement. Legislated membership of the ICC was then expanded to include the Secretary of the Department of Aging and Pennsylvania's Physician General as a representative of the Department of Public Health. In formulating a plan to expand the scope of interagency collaboration to these two new interagency partners, issues related to health literacy were added to the ICC's agenda.

In July, 2001, the ICC sponsored a special symposium on health literacy. Because of Pennsylvania's large number of older citizens, an emphasis was placed on health literacy issues and aging. In addition to ICC members, special guests with interests and expertise in health and health literacy participated. The symposium raised awareness around literacy and health, and stimulated important dialogue among professionals about how to meet the health needs of certain populations, including those who have diverse cultural or linguistic backgrounds, low literacy, or who are more than 65 years old.  Embedding health literacy in the work of the ICC, a well-established and visible organization, helped to bring greater attention to the issue. A proceedings paper is providing a foundation for crafting recommendations for action. The implications of low health literacy and the need for expanded interagency partnership will be a centerpiece of the second ICC report, scheduled for publication in 2002.

California Literacy's Matthew Scelza recounts how members of his agency looked at social issues of importance to ABE and were drawn to the research and writing about low literacy and poor health. California Literacy, a private, non-profit organization, develops organizational capacity and leadership among community-based organizations delivering ABE services. Scelza was particularly startled by the finding that 40 percent of Americans cannot understand medication instructions (Williams et al., 1995). "California," he says, "does not have a coordinated effort to address literacy and health issues although there are many exemplary small programs and individual efforts."

In an effort to provide coordination and build critical mass around addressing these issues, California Literacy organized a two day event that brought together people from Health and Human Services, California medical providers and insurance groups, the state Department of Education, nursing associations, and other stakeholders in November, 2001. The purpose of the meeting was to build awareness, develop ideas and broaden involvement, and build an action agenda for working together across agencies.

Bob Bickerton, director of Adult and Community Learning Services in Massachusetts, points out that when literacy joins other public agencies to address a common social issue, in, for example, such endeavors as the Massachusetts Family Literacy Consortium, a greater appreciation for the key role of adult literacy emerges. This gives birth to a new group of literacy advocates, frequently raising unexpected voices for support of ABE overall. Bickerton also points out that many ABE advocates in the United States are currently struggling to be defined not solely by workforce development. While employability is important, it is not the only goal for ABE students. Connecting with health has the potential to position ABE more broadly and to leverage investment in literacy for broader purposes.

Enhancing Current Services and Leveraging Resources

Yvonne Thayer, director of Adult Education and Literacy in Virginia, remembers how her state became aware of the connections between low literacy and poor health at the national Adult Literacy Summit held in Washington, DC, in 2000.  Recognizing the importance of taking action, but lacking a dedicated stream of funding, Virginia integrated the concept of health into English language services with an emphasis on technology. Bonus points in a funding process were given to projects that included a health literacy component. The state is initiating two levels of activity: enhancing current services and curriculum development. Results from the first year were encouraging. The importance of health literacy was recognized and teacher-student teams developed projects that were shared electronically across the state. For example, one team created web-based virtual tours of local hospitals, supported by the state technology component that provided equipment, technical assistance, staff development, and software support. 

State plans include providing video conferencing that will enable students to talk to each other about the health projects, general health concerns, and other topics of importance to them. The health literacy curriculum development projects are also showing the potential to energize and catalyze the revision of curricula. 

At this time, Yvonne Thayer says they are "testing the waters" to see what will work and then evaluate policy and process for the long term. The state is not letting the dearth of specific funds for health literacy deter them. Dr. Thayer points out that states and state directors need to reflect on what is important to the populations served. When states do not have enough funds, she says, look to leveraging already existing funds, making one initiative interactive with another. States also need to think about issues in the broader public domain and connect with the great social issues of the day. ABE engagement in these issues creates public awareness about what ABE is all about and provides information that others can understand. Echoing Bickerton, she reminds us that it builds support for ABE over the long term. 

Promoting Contextualized Education

Massachusetts' Bob Bickerton notes that many state directors believe in the need to have curriculum and instruction embedded and contextualized in learners' lives. They support the views of Malcolm Knowles (1989), known for his clear and coherent voice on honoring adults' "need to know" and using immediate questions as fundamental starting points. Mezirow (1990), Brookfield (1986), and Quigley (1997) also all suggest that adult learning must address immediate needs and concerns. Auerbach (1992) and Fingeret (1990) both promote an approach in which literacy education is understood in the context of adults' lives, rather than separated from it. For Fingeret, the context of adults' lives - their issues, problems, aspirations, skills, cultures, languages - creates the basis for literacy work as well as the tools to engage in it. State directors, however, have a difficult time creating an environment that ensures that this actually happens this in the field. As Bickerton notes, "Health can be a wonderful way to begin a different process.  Health is a vitally important topic to the ABE learner and their families and communities.  It is a common denominator in multilevel classrooms, illuminates the value of group learning, and can be jet fuel for programs to begin discussions about the how contextualized curriculum and instruction is approached, and how curriculum can be reshaped." More on how this works in practice is covered in the following section.

Building Student Leadership and Enhancing Literacy Education

Building student leadership has been both the foundation and the outcome of the literacy and health work done in Massachusetts over the last decade. The work has emphasized the development of Student Health Teams. These teams are comprised of groups of students who work with facilitators, teachers, community health organizations, and health practitioners. Using teamwork and creative methodologies such as drama, art, and music, these teams employ a peer teaching and learning together approach to engage in a variety of activities. Student Health Team activities may include:

The philosophical basis is allied to that of contextualized education and the teachings of Paulo Friere. Friere argued that traditional adult literacy approaches promote literacy as a set of monolithic skills existing independently of how or where they are used and as an individual deficit to be corrected, perpetuating the marginalization and disempowerment of learners (Auerbach, 1992). This leads to the "banking" model of education, in which learners are seen as empty vessels awaiting deposits of knowledge by the teacher, who makes all the decisions and controls the process. According to Freire (1985), the banking model supports the development of individuals who accept the passive role imposed on them and learn, along with a fragmented view of reality, to adapt to the world as it is and not to act upon and change it (Rudd & Comings, 1994).

In Massachusetts, student leadership of the health projects through Student Health Teams has helped programs to move away from the banking model and towards education for transformation. As one member of a student health team put it:

"I saw my opinion was important and it felt good.  In Hispanic families, the parents or the husband make all the decisions. I thought, Žoh my God, I have the right to speak and give opinions.' We [the health team] said that HIV/AIDS and drug and alcohol use were the biggest community health problems÷and we found that brochures to teach about these problems were too hard. No one understood the words and everything was too crowded, too complicated÷so we started with making simpler brochures. Everyone on the team, my family, and friends like them and it made me so proud."

Students across the state echo feelings of pride in their work, and  in being involved with health issues important to everyone in the program, including staff, and in projects that made real changes and have visible results. The personal growth that comes from being involved and being supported has been highly motivating.  

The experience of talking in front of many other groups and being heard is also motivating. As one student said, "When I realized that what I had to say was more important than how I said it, I could speak English." Reading, writing, math, and technology skills are pressed into service and enhanced through the literacy and health work. Student teams learn to use the Internet to search for health information, read maps, construct surveys, make presentations, learn how to ask questions, and develop knowledge about the economic and political environment surrounding health issues. One teacher noted, "There is nothing like a small group experience, like the student health team, that arises around purpose and a focus where all the cognitive stuff happens peripherally. When you are not focusing on learning goals, learning sneaks up on you."

Massachusetts' adult basic education learners have been articulate about what they see as the problems with health education for limited-literacy individuals and groups and have developed an array of projects, interventions, and materials to assist in addressing the problems (MA Department of Education, 2000). In the process, they have developed new knowledge, skills, awareness, and vision for social action that promote new images of themselves as people who can help make things change. Learners involved in these activities reported that they did not feel like immigrants or foreigners in their own living place. For the first time, they felt included in and part of the United States (System for Adult Basic Education Support, 2001).

Reaching New Student Groups

Kim Lee, director of Assessment, Evaluation, and GED within Georgia's State Department of Technical and Adult Education, notes that Georgia is experimenting with a new approach to literacy and health. A year ago, they read the symposium proceedings report from the National Health Council (2000) about literacy and health that made them take a closer look what was being done, and not done, in Georgia. A working group of ABE and health education professionals was formed to explore what could be done. The group wanted the work to assist health care providers who identified literacy as an issue and help ABE teachers incorporate health into their classrooms. They decided to break the ABE work into two pieces, both of which will emphasize referrals and collaborations between ABE programs and health care facilities

The first activity was training for ABE teachers on how to modify and incorporate health content into existing ABE programs. The Georgia State Department of Education sponsored a summer curriculum academy for fulltime teachers to review and begin the process of integrating health content literacy into curriculum. To identify top health concerns for integration, panels of physicians, public health specialists, and dentists were brought together with the teachers to speak together about relevant health areas, identify resources, and answer questions in response to the specifically identified health concerns. Through these processes, four broad health areas emerged: diabetes, heart diseases including hypertension, oral health, and HIV/AIDS. A full-time health literacy coordinator with a nursing background has been hired at the state Department of Education to review the results of the academy and work with teachers to use this information as part of curriculum revision and incorporation of health information 

The other aspect of the initiative was to create "health literacy" classes to be taught by literacy and health education teachers together in a variety sites such as hospitals, churches, and public health agencies. Such programs may attract groups of learners who often do not seek regular ABE services.

The healthy literacy classes were included because Kim Lee and others in the Literacy and Health Working Group had explored the literature on how limited-literacy adults often feel stigmatized (Beder, 1991; Davis et al., 1996). Many individuals in need of services will not go to a regular ABE program but might attend "health literacy" classes that have a dual agenda - learning about health topics important to you while simultaneously developing literacy skills - and perhaps transition to regular ABE in the future. Health education can thereby become a vehicle for literacy, an approach that the Massachusetts experience supports.

Kim Lee says that Georgia is venturing into uncharted territory; they are not sure where the road will lead them. However, staff in the state think that the junction of literacy and health is a crucial area for ABE to address that has a natural fit with ABE services overall, and family literacy in particular, and they are committed to its pursuit.

Lifelong Learning Tools

The past decade has provided insights into how best to approach integrated literacy and health education. The following are my perspectives as a researcher, practitioner, and advocate in literacy and health about what has been learned from the Massachusetts' experience, from the work of other states' ABE systems, and through dialogue and collaboration with the professionals in public health and health care. I have learned that health education needs to be more than simply reaching people with a particular health message or a particular piece of health information. The current emphasis on addressing the health education needs of limited-literacy groups through simply rewriting existing materials at an easier language level is exceedingly limited. Information is only one piece of a process that needs to include community context, participation, and support. Adult basic education learners in Massachusetts have, in fact, been very articulate about what they need. Simpler materials are only the tip of the iceberg, they say. A psychologically safe environment in which to learn about health, the opportunity to ask questions and to consider the relevance of the information to everyday life, and the opportunity to talk about different cultural perceptions about health and medical treatment are all vitally important. They also say that many recent immigrants may have little or no experience with concepts of prevention and early detection, rendering many public messages ineffective. Information about and a forum in which to discuss how the American health care system, including public health insurance programs, operate is needed.

A recent series of focus groups with patients at Montreal (Canada) General Hospital found similar views on health education in relation to particular medical conditions. These focus groups articulated a need for small, comfortable settings for patients and their families in which they can learn about their medical conditions and their treatment. They should be designed by patients and families working with medical personnel, using multifaceted approaches to patient information and activities, with an emphasis on participatory group activities (Centre for Literacy of Quebec, 2001).

Working towards the integration of literacy and health education has made me confident that ABE programs offer the luxury of time and an appropriate environment, in which adult literacy learners and staff can work together with community health educators to design and implement health teaching and learning programs. The programs can address the health and the language and literacy learning needs of ABE students and can catalyze them in a process of mutual enhancement. ABE can provide tools for lifelong learning about health that can be applied in myriad settings, both within health education and in the broader world.

Conclusions

Enormous opportunities for synergy with the health care field exist. Both ABE (including our learners) and health care need to develop system goals and map strategies together to accomplish these goals. Both sides need to rethink and reshape how we can work together to enhance the health status and literacy level of our country's most vulnerable populations.

In this article, I have presented a number of different approaches that state literacy systems have used to begin their work. These approaches are based on the unique circumstances, needs, and concerns of particular states and, in most cases, are still in the very beginning stages. The ABE system overall needs to think through what policy supports need to be in place to provide a firm foundation on which to rest literacy and health work. Attention also needs to be paid to how states can involve ground level practitioners in developing and shaping the work.

One obvious support needed is financial. Teacher training on integrating health content, revising curriculum, and grappling with work that may throw difficult personal health issues into sharp relief have costs associated with them. Student health teams also need to be supported in their work. Staff need supported time in which to work with their local health care agencies on information sharing, on cross-referrals, and to explore collaborative actions.  

Creating a climate that supports literacy and health programming is also needed. Such a climate begins with a long-term commitment to the importance of literacy and health work, and to building the ABE field's capacity to work effectively in a new arena.  It also includes time and space to consider crucial questions that arise as the work increases. These questions include such concerns as 

None of this will come without financial support, capacity-building, research, and the willingness to rethink and reshape practices in both the literacy and health worlds.  However, the reasons to do this work are clear and compelling. Our country's most vulnerable, low-literacy groups, concentrated in minority populations and numbering 90 million people, have poor health (Davis et al., 1996; Kirsch et al., 1993; US DHHS, Public Health Service, 1991). They die sooner than the average population and have a higher incidence of chronic disease (US Bureau of the Census, 1993; Weiss et al., 1992). Many are also our ABE students. Collaborating with the health care world to address their health literacy needs to be one of ABE's priorities in the coming years.

References

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Beder, H. (1991). "The stigma of illiteracy." Journal of Adult Basic Education, 1 (2).

Brookfield, S.D. (1986). Understanding and Facilitating Adult Learning. San Francisco: Jossey-Bass.

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About the Author

Marcia Drew Hohn has been a researcher, practitioner, and advocate for the integration of health and literacy education for the past decade. In Massachusetts, where she is the Director of North East System for Adult Basic Education Support, she helped initiate and carry out comprehensive health projects with the Massachusetts ABE community.