Volume 8, Issue C ::: November 2006
Both educators and medical professionals have roles to play in making healthcare more accessible to all
by Jennie E. Anderson & Rima Rudd
Not long ago, Focus on Basics editor Barbara Garner's son gashed his face and needed stitches. She drove him to the hospital and, despite having been there a number of times, couldn't find the entrance. She was stressed. She thought she had followed the signs, but ended up down a dark alley. Finally a young man in medical garb pointed her in the right direction. Do you have a story similar to Barbara's? Perhaps you were more successful and made it into the building, but couldn't find the office you needed.
Hospitals are notoriously hard for anyone to navigate, particularly those with language or literacy limitations, and especially when they're under stress. To understand and document what makes healthcare facilities so confusing, and to highlight unnecessary barriers, a National Center for the Study of Adult Learning and Literacy (NCSALL) research team created the walking interview. The team asked teacher/student pairs to find their way to find their way to particular places in a hospital, such as the diabetes center, the medical records office, or the pharmacy. As the volunteer pairs navigated through the hospital, the students talked aloud about the process, describing how they made choices about where to go. They mentioned the maps, signs, information desks, and passersby they used to find the predetermined locations, pausing during the walk to verbalize decisions like: "I am now taking a right-hand turn because the sign says ‘Medical Records' and points to the right I'm not sure where to turn here so I will ask the man standing over there." The teachers in the pairs encouraged them by using "why" prompts such as, "Why did you stop here?" and "Why did you decide to turn left?"
This activity, conducted a number of times with a variety of people, including adult literacy students and teachers, graduate students, friends, and relatives, was revealing on many levels. One of the most profound results was the impact it had on adult basic education (ABE) teachers, many of whom got lost. As one teacher said, "Now I'm lost and frustrated. Imagine what my students must feel like."
The NCSALL team, known as HALL for Health and Adult Literacy and Learning, also gathered information about the approximate reading grade level of materials found in the hospitals by using the SMOG readability formula (McLaughlin, 1969) and the PMOSE/IKIRSCH document readability formula (Mosenthal & Kirsch, 1998). This yielded data that could be used to encourage hospital administrators to make their institutions more accessible.
The initial, exploratory study provided insight about some of the literacy-related barriers that adults, especially those with low literacy skills, encounter in hospitals. One insight was that participants relied more on people than on signs and maps when they needed assistance with directions. The physical layout and structures of hospitals are shaped by a scientific and medical logic that is not necessarily intuitive to people outside of the healthcare field.
The HALL team learned that the format, placement, and complexity of signs made them difficult to read. For example, a hospital wing funded by the Goldenshorn family was labeled "The Goldenshorn Center" in large letters and "for women's health" in smaller letters. A teacher asked "How is my student going to know that that's the name of the person and not the name of the disease?" Some signs are meant to honor the donor, not to guide the traveler.
Participants were unfamiliar with medical terms. "Nuclear medicine" does not sound like a place to go for tests. In addition, many participants found the abbreviations used on signs and forms problematic. One hospital had a sign that read "ENT" instead of "Ears, Nose, and Throat". The terms used on signs are read by patients as well as medical staff and need to be familiar to all.
The reading grade level of materials such as postings, brochures, and pamphlets ranged from grades eight to 21 (advanced doctoral level). In one patient education brochure the team examined, the first period appears seven lines down into the text. Sentences are lengthy and awkward. Vocabulary is unnecessarily difficult. The writers of these materials do not seem to be trained to communicate with lay readers or readers with limited literacy skills.
Relationship of Health Literacy to Literacy Skills
A commonly used definition of 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" (US Department of Health and Human Services, 2000). However, some researchers are uncomfortable with this definition because of its focus on individuals. As a result, the US Department of Health and Human Services (2003) and the Institute of Medicine (2004) emphasize a dual responsibility for health literacy. In its 2004 seminal report, Health Literacy: A Prescription to End Confusion, the Institute of Medicine (IOM) notes that health literacy is "an interaction between the skills of individuals and the demands of health systems." As a result, the IOM Committee on Health Literacy states that "health literacy occurs when the expectations, preferences, and skills of individuals seeking health information and services meet the expectations, preferences, and skills of the people providing health information and services." Consequently, it is important to examine the skills of adults in our society as well as the skills of health professionals.
Findings from the 1992 National Adult Literacy Survey and the 2003 National Assessment of Adult Literacy indicate that about one half of the adults in the United States do not have the reading, writing, and math skills considered to be necessary to fully engage with print materials used in everyday life in order to accomplish everyday tasks (Kirsch et al., 1993; Kutner et al., 2005). An analysis of health literacy, based on the 2003 survey, indicates that one half of the adults in the United States have limited literacy skills and are not able to use, with accuracy and consistency, available health materials for every day activities such as those related to using information on labels of medicine (Kutner et al., 2006).
At the same time, the communication skills of professionals in the health field could also be described as insufficient. More than 800 published studies indicate that the reading grade levels of health materials far exceed the reading skills of the average high school graduate (Rudd et al., in press). That mismatch makes navigation of health systems exceedingly difficult. Rima Rudd often crystallizes the issue by pointing out the absurdity of a sign saying "nephrology." The nephrologists know where they work, she explains. For the rest of us, the sign should say "Kidney Specialists."
Sharing the Burden
The responsibility for making health activities less burdensome and care and services more accessible should be shared. There is a documented need to remove literacy barriers in health-related services. One action is to identify existing barriers and bring them to the attention of those who can make the changes. This can be done via partnerships like the highly successful teaming that occurred between the Harlem Hospital and the Mid-Manhattan Adult Learning Center (described in the box below). The information gleaned from the walking interviews enabled the HALL team to raise issues with their healthcare colleagues. The team has written The Health Literacy Environment of Hospitals and Health Centers, a guide that healthcare professionals can use to assess and address the literacy-related barriers in their institutions. And literacy teachers can use the many health-related literacy materials available to build their students' navigation skills. (See resources.)
NCSALL's HALL team has started the conversations and provided some of the insight that will eventually make healthcare facilities navigable for everyone. While hospitals, too, must do this work, readers of Focus on Basics tend to be adult basic educators. It is up to adult basic educators around the country to continue this work locally, by working with students and by bringing what they learn to the attention of those in charge at hospitals. That way, the next time someone rushes a loved one to the hospital, finding the proper doctor shouldn't be so hard.
Institute of Medicine (2004). Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies of Science.
Kirsch, I., Jungeblut, A., Jenkins, L., & Kolstad, A. (1993). Adult Literacy in America: A First Look at the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics, US Department of Education.
Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006) The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: US Department of Education, National Center for Education Statistics.
Kutner, M., Greenberg, E., & Baer, J. (2005). A First Look at the Literacy of America's Adults in the 21st Century. Washington, DC: US Department of Education.
McLaughlin, G. (1969). "SMOG grading: A new readability formula." Journal of Reading; 12, 639–646.
Mosenthal, P. & Kirsch I. (1998). "A new measure for assessing document complexity: The PMOSE/IKIRSCH document readability formula." Journal of Adolescent and Adult Literacy, 41, 638–657.
Rudd, R., Anderson, J., Nath, C., & Oppenheimer, S. (in press). "Health literacy:An update of medical and public health literature."In J. Comings, B. Garner, & C. Smith (eds.), Review of Adult Learning and Literacy: Vol. 7.Mahwah, NJ: Lawrence Erlbaum.
US Department of Health and Human Services (2003). Communicating Health: Priorities and Strategies for Progress—Action Plans to Achieve the Health Communication Objectives in Healthy People 2010. Washington, DC: US Government Printing Office.
US Department of Health and Human Services (2000). Healthy People 2010: Understanding and Improving Health (2nd ed.). Washington, DC: US Government Printing Office.
About the Authors
Jennie Epstein Anderson is a consultant at John Snow, Inc. She was the coordinator of Health Literacy Studies at the Harvard School of Public Health, where she completed her master's degree. Her interests include health communication, public health program implementation and evaluation, and health literacy.
Rima Rudd is a member of the faculty at the Harvard School of Public Health and a NCSALL researcher. She is involved with research and connecting research and practice, working closely with the adult education sector as well as with public health and medicine.
Partnerships Between Literacy Programs and Hospitals
Several years ago, teachers at the Mid-Manhattan Adult Learning Center in New York City began noticing that their students were interested in health issues. Students told their teachers about the negative experiences they had at hospitals, explaining that they stayed away from hospitals as a result. Some students talked of being confused about the physical layout of hospitals: they found them difficult to navigate. They mentioned having trouble finding their way to important services in hospitals. At the same time, several students expressed an interested in pursuing careers in healthcare. Teachers from the Mid-Manhattan Center realized that the best way to explore their students' interests in and issues with healthcare was to work with people directly in the healthcare field. They decided to contact Harlem Hospital.
The medical director at Harlem Hospital expressed an interest in working with the Mid-Manhattan Center, and they formed a partnership, largely as a result of the medical director's enthusiasm and dedication. What followed was a series of illuminating events for both staff at Harlem Hospital and adult learners at the Mid-Manhattan Center.
The first event brought Harlem Hospital staff into adult education classrooms. The heads of the pharmacy, the emergency room, and managed care departments visited three different classes at the learning center and spoke with the students about how to navigate services at Harlem Hospital. The students asked a lot of questions and reported feeling empowered by the dialogue.
The second event, a follow-up to the classroom discussions, brought Mid-Manhattan Adult Learning Center students, friends, and families to Harlem Hospital for an all-day event. During this event staff from departments, such as maternity and emergency, presented the visitors with an overview of their services. Hospital staff led the visitors on tours of various parts of the hospital. The hospital staff members were very enthusiastic despite the fact that many of them — the director of the emergency room, for example — had been on call all night.
Information about the Harlem Hospital forum spread. The media covered the forum in both print and on local television news. The students were incredibly appreciative of all that the Harlem Hospital staff did for them. When the students returned back to the Mid-Manhattan Adult Learning Center, they shared their experiences with their classmates. The adult education students who participated in the event developed a short, widely-distributed video that documents their experiences visiting the hospital and talking with hospital staff.
The leadership from both Harlem Hospital and the Mid-Manhattan Adult Learning Center was critical in forming this successful partnership. The activities helped adult education students and teachers better understand how to navigate hospitals. These activities also made hospital staff more aware of the literacy-related barriers that often make it difficult for people to locate services in hospitals. The positive media coverage of the event at Harlem Hospital enhanced the reputation of Harlem Hospital within the community. Partnerships like the one between the Mid-Manhattan Adult Learning Center and Harlem Hospital can be a great way to identify and address some of the barriers people face as they try to access and navigate services in hospitals.
Finding Health Literacy Professional Development and Teaching Materials
Adult educators interested in health literacy have many Web sites available to them. We've chosen a few to get you started.