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Impacts and Outcomes of Participatory Health Education

(partial reprint of article in Literacy Harvest, Fall 2004 by Marcia D. Hohn, Ed.D.)

So what is happening as a result of a decade of work in Massachusetts on health and literacy using a participatory health education, peer leadership model? What health topics have students learned about? What health knowledge and skills have they gained?

In the fall of 2002, I undertook a series of informal focus groups and individual interviews with adult students, student health team members, teachers, and program support staff about the impacts and outcome of their health work. My questions included:

Table 1 shows the number and type of participants in the eight informal focus groups and 19 individual interviews. Eleven programs are represented.

Table 1. Research methods and respondents

  Focus groups Interviews Total
Student health team members 16 16
Other students 16 3 19
Program directors* 3 6 9
Program teachers* 10 5 15
Health team facilitators* 3 5 8
Total 48 19 67

* Program directors, teachers, and health team facilitators were asked to respond to questions based on their discussions with students. They were also asked to comment on the impact of health work on the program's organizational development.

Later on, I gathered additional input from students and health team facilitators who participated in two regional meetings where my findings were presented. Approximately 30 students and 10 facilitators answered three supplementary questions:

A Unique Approach to Health and Literacy

In their responses to focus group and interview questions, teachers and program directors expressed satisfaction with this new approach to health education and literacy learning. One teacher put it this way:

I see this as a very different kind of health education. Lots of ESOL teachers have done health, but it has always been pedestrian. It assumes the health education framework is already there and can be transferred over by language. But the student health teams do not assume any knowledge or experience.

Teachers were also delighted with the way in which health topics energized literacy instruction. In fact, teachers from one program that did not have a health grant or a student health team were nevertheless working with students to develop a curriculum based on the health interests and needs of students. The following comment, made by a teacher, demonstrates the success of working with a topic that encourages students to take ownership of their own learning:

The students were so open and excited, wanting to participate and willing to share. Students really can direct their own learning, and we will never again presume to know what students need, want, and know. This was a learning process for all of us.

A program director agreed that health is a perfect platform for self-directed learning:

Health issues are right there with students' needs. They don't have the information they need and access to services. The health team is reaching students in a new way. It is so incredibility effective. The health team really reached the students and the students got the help they needed. It has heightened consciousness about student leadership and helped make student purposes and goals the centerpiece of the program, [as well as] deepening commitment to providing a variety of learning and growth experience. It infused a different methodology across the program to a critical mass of staff.

Student-reported Learning on Health Topics

In focus groups, student health team members, as well as students who had participated in the health team activities, reported on the health topics their programs chose to study. The most frequently mentioned topics were:

Topics that were also mentioned, although less frequently, included sexually transmitted diseases, including HIV/AIDS; first aid, including CPR; community and family violence; alcohol and drug abuse; and hand-washing techniques, which was particularly popular during the SARS scare. By studying these topics, students said they not only learned new information but, in some cases, new ways to behave.

Learning about Stress and Depression

It's not surprising that many health teams selected stress as a topic to study. Like so many Americans, adult literacy students often find themselves juggling work, school, and family. English-language students may also simultaneously be adjusting to a new culture, a new language, and a new way of life. As one student said, "Everyone has stress. This is a topic everyone can relate to-students, teachers, everyone."

During focus groups, students said that learning about the emotional and physical effects of stress was important to them; they were relieved that others were acknowledging their stress. Many said they had not known that stress could raise blood pressure and, over time, play a role in the development of heart disease. Similarly, many said that they had not known that stress could tighten muscles, resulting in headaches and backaches. One health team member related this learning to his own experience:

I didn't know stress and my back pain were related. I was taking drugs for my back pain but what I really needed to do was get my stress under control. I see how things are connected more now and that there are different options.

Students said they had been interested in examining connections between stress and emotional outcomes, such as anger. During the focus groups, they discussed how the health studies activities allowed them to explore the interplay between physical and mental or emotional reactions. In doing so, they were able to identify stressful situations with their families or their work that had spiraled out of control and how they might have better managed these situations if they had acknowledged and known how to, reduce their levels of stress.

In the focus groups, students said they had fun and were interested in learning about stress-reducing activities. Frequently mentioned activities included self-massage, deep breathing, acupressure, stretching, listening to music, exercise, and reading. Some students introduced stress-relieving techniques from their own cultures, particularly massage and meditation. Students identified smoking tobacco and drinking alcohol as popular reactions to stress. They noted that reducing stress might make it easier to quit smoking. Some talked openly about the way their culture, or in some cases their families, uses alcohol as a form of self-medication for stress and depression.

Like stress, depression is prevalent among adult education students. ESOL students often experience depression as they adjust to life in the U.S. A variety of experiences can trigger depression including past trauma, the loss of one's familiar culture and language, the overwhelming number of adjustments an immigrant must make, feelings of powerlessness, difficult life circumstances, or any combination of these experiences. Similarly, American-born literacy students may feel hopeless about the prospects of improving their lives. Any conversation about depression reveals a variety of cultural beliefs, societal perspectives, and experiences among both English-language learners and English-speaking students about mental illness in general and depression in particular. Some cultures do not acknowledge mental health issues or pursue drug and therapy interventions. Some cultures, including American sub-cultures, interpret depression as a sign of laziness. Moreover, ESOL students are rarely familiar with community health resources for screening and treatment.

In light of these complexities, many students said it was useful to learn about the distinctions between sadness and depression and between stress and depression, as well as how to recognize symptoms and levels of depression. They were relieved to learn that depression has a physical basis and can be treated. Some recent immigrants described feeling "down" and wondered what was wrong with them, why they felt this way. One student explained how studying depression helped her cope with these feelings:

I couldn't understand why I felt so bad. After all, I was in America and this is what I wanted. But my children are still back in my country and it will be many years before I can bring them here. I miss my language and English is so hard and there is so much I do not understand about the culture. I feel so alone. I feel better knowing my feelings have a name and there are things I can do to feel better.

During focus groups, most students reported that understanding the physical and psychological components of stress and depression affected the way they thought about and reacted to the conditions. The health literacy activities affirmed for many students that depression is, in fact, a medical condition-that those terrible feelings of hopelessness have a name and can be ameliorated through medication or therapy, exercise, and diet. As a result, students said that they were more apt to:

Learning about Diet and Exercise

If everyone deals with stress, everyone must also eat. And food, which is about as closely allied to culture and social traditions as a topic can get, generated enormous enthusiasm during the focus groups.

Many students said that prior to health team activities, they had not paid serious attention to what they ate, how much they ate, or how the food they ate was prepared. One student said:

I was appalled when I saw how much [fat] was in Coke, fries, and hamburgers. I did not know this before and I was really shocked. I am trying to eat at home more and use healthy recipes.

"Getting fat in America" was a recurring theme.

In my country everyone walks. But here, everyone rides in a car or a bus. And when it is cold, you stay inside and watch television and eat. There is food everywhere and sizes are so big. You get fat in America.

Every focus groups and interview conducted included a conversation about being overweight and trying to lose weight. The amount of sugar- especially hidden sugar-in foods prompted vigorous discussions. Students said that as a result of the health team activities they were making connections between eating habits and medical conditions such as high blood pressure and diabetes.

Along with learning about diet, students learned about food preparation and cooking. During the focus groups, students said they had learned how to trim the fat from beef and chicken, use recipes that require less oil and salt, and incorporate more fruits and vegetables into their meals. One program conducted a Healthy Eating Fair, in which health team members prepared healthy dishes, accompanied by recipes, representing the students' countries of origin. Some health teams sponsored "healthy recipes" contests with prizes for the best recipes. Students, many of whom were in their mid-30s and had school-aged children, were particularly interested in learning how to provide nutritious meals and snacks for their families. One health team member noted:

Spanish people fry everything and use a lot of butter and mayonnaise. They need to know how much fat that adds to what they are eating. I told my Mom to try different ways to prepare food and she is trying.

In focus groups, students spoke about diet and exercise together; however, most of the behavioral changes they reported were related to food. Students said that they had:

Though exercise was discussed in less detail, students did report behavioral changes, primarily in relation to weight control, stress reduction, and general well being. Students who studied depression recognized the role exercise can have in treating that condition as well. Many students talked about the amount of walking they did in their native countries. Since walking was the primary form of exercise for most students, some health teams prepared posters advertising pleasant places to walk as well as low-cost gyms in the area. To address the needs of parents, one team also prepared information about playgrounds and YMCA programs for children. Students who reported changes in behavior said they substituted walking for riding whenever possible, or walked in the park or on the beach in warm weather.

Learning about Cancers and Smoking

Various cancers and smoking cessation constituted a third cluster of frequently mentioned health topics. Students said they were concerned about cancer because it affected their families. They wanted to learn about different types of cancers and treatments. Breast cancer was of particular interest, perhaps because of publicity from the earlier breast and cervical cancer health literacy initiatives and because of the large number of women enrolled in the programs. Cervical cancer received less emphasis, though the women students were as a group more at risk for cervical than for breast cancer because so many were in their mid-30s.

Most health teams that tackled smoking focused on the physical effects, with an emphasis on how to stop. They talked about smoking as a reaction to stress. They also discussed the role of tobacco smoke in disease, especially cancer. Health teams presented data on the effects of secondhand smoke. This information was new to most students, who were surprised and upset to learn that their smoking could affect their children's health.

In terms of actual behavioral changes, many students said they had tried to stop smoking-although nobody reported that he or she had been able to quit completely. Most students said they were in the process of cutting down; they were interested in stopping completely, as one student put it, "to save money and my health." Students did, however, report significant behavioral changes relating to second hand smoke. Upon learning about the effects of second hand smoke, a substantial number of smokers said they had started to smoke outdoors, away from their children. One health team reported that their program's smokers no longer clustered in the doorway used by children from a day care center.

Student-reported Learning across Health Areas

Besides learning about specific health topics, students said that they would be able to apply the knowledge and skills they had learned to other health issues as well as the health of their families.

Students were particularly enthusiastic about having developed a health vocabulary. It was important for them understand the exact definitions of terms like depression, stress, blood pressure, blood sugar, and cholesterol. Similarly, knowing the names for body parts (such as cervix, uterus, prostate, and testicle) and screening tests (such as PAP, mammogram, and PSA) gave students the means to describe and discuss their health.

In fact, the ability to communicate about health may have been one of the most important outcomes for many students. Students reported that they were better equipped to describe what it means to be healthy, as well as the physical symptoms of medical conditions. As a result, their skill and confidence increased. Students said they were less afraid to pose questions to doctors and other health care professionals, and that they were not afraid to speak up when the didn't understand something.

Students also improved their ability to find and evaluate health information. Most health teams provided information on where to find local health information and community health services, especially for prevention and early detection. During the course of studying health topics, students also learned how to search the Internet for health information. Specifically, they learned how to find sites with easy-to-read information and how to distinguish reliable sources from sales pitches

The concepts of prevention and early detection were new to many recent immigrants. Many English-language students had little or no experience with tools such as blood pressure checks, blood sugar and cholesterol screening, mammograms, or PAP tests. Learning that these tests are available and why they are important prepared many students for learning about specific health topics.

Finding out about available community health services was also critical for many students, especially immigrant students being introduced to the concepts of prevention and early detection. Students learned about community health centers and mobile vans, that provide a variety of screening tests and services, from tests for blood pressure, blood sugar, cholesterol, HIV/AIDS, or sight and hearing acuity to flu vaccines.

Many students said they learned how to make sense of nutrition labels, allowing them to improve the nutritional quality of meals for themselves and their families and to control their weight.

The Impact of Health Learning

During focus groups and interviews, students and staff in programs that had used a peer leadership model to promote health learning reported that students not only gained new knowledge and skills, but also changed their attitudes and even their behaviors in regard to their own health and the health of their families. Self-reported data has its limits, and my findings should be confirmed by studies that incorporate larger focus groups and more varied methods. However, my conversations with program participants lead to several possible conclusions about the impact of the health work in Massachusetts:

Students and program staff affirmed that it is important to learn about health in adult literacy programs.

Teachers and program directors said that learning about health contextualized and energized literacy curriculum and instruction.

Students in this study increased their knowledge about the health topics they studied and their skills across a variety of health areas. They acted on this new knowledge to make changes in their habits and self-care practices that can affect their health and the health of their families. The skills they learned might help them better advocate for their own health as well as the health of their family members.

Students in this study seemed to believe that they have more control over their own health, as well as the health of their family members, than they did before the participated in the activities.

Intense engagement with health education using the empowerment model promotes a positive experience of that education, which may set the stage for lifelong learning about health.

For the students in this study, learning about health through a peer leadership empowerment model promoted self-efficacy in health care and promoted positive changes in thinking and acting about health. These tentative conclusions suggest that the health work in Massachusetts has already had a significant impact on students who have participated in the programs. The peer-leadership empowerment model of health literacy education is working and should be expanded to include more programs and more students.