Title: Addressing health literacy as a community priority
Words:
Author: Jennifer Kimbrough, PhD
Associate Director, Center for Youth, Family & Community Partnerships
University of North Carolina at Greensboro
Jennifer Gore, MSW
Executive Director
Reading Connections, Inc.
Mandy Benson, MPH
Community Health Program Manager, Center for Youth, Family & Community Partnerships
University of North Carolina at Greensboro
Sandra Blaha, RN, BSN
Assistant Coordinator, Congregational Nurse Program
Moses Cone Health System
Charles Hansen, xx?
Director of Research, Internal Medicine Program
Moses Cone Health System
Title: Addressing health literacy as a community priority
Abstract:
The ability to obtain, understand and use the information needed to make informed health choices is known as health literacy. Low health literacy among members of populations such as those with poor reading skills, those with limited mastery of the English language, members of ethnic or cultural minorities, and immigrants is likely a major contributor to health disparities in the U.S. 1A southern community consciously formed a collaborative partnership to identify and address health literacy needs. Group processes, successes and failures of a four-year initiative are reported here in anticipation of more communities beginning to focus specifically on health literacy issues.
Key Words: health literacy, community health, health communication, community development
The ability to obtain, understand, and use the information needed to make informed health choices is known as health literacy. Low literacy among members of populations including older adults, those with poor reading skills, those with limited mastery of the English language, members of ethnic or cultural minorities, and immigrants is likely a major contributor to health disparities in this country, according to Healthy People 2010. 1
People with low health literacy may lack not only the ability to read well but also knowledge about the body, its functioning, and the nature and causes of different types of disease.1 Low literacy skills impact health status and create barriers to access and comprehension of diagnosis and treatment options. In the healthcare system, patients with low health literacy often have greater difficulty understanding their conditions and making decisions related to treatment. An individual’s difficulty is exacerbated when their health care providers do not fully understand the degree to which they are lacking in understanding. Low health literacy costs the health system as much as $73 billion a yearand results in poor health outcomes and a lower quality of life for individuals with low health literacy.1,2
Many barriers—including poverty, limited education, low reading levels, and inadequate English-language skills—stand in the way of developing basic health literacy.1 Beyond gaps in the education and reading skills of Americans, however, additional barriers arise because healthcare professionals often inadvertently make it difficult for lay people to understand what to do. Throughout their professional education and training, healthcare providers are taught to use precise technical language to discuss body parts and processes, disorders, and treatments—a habit that usually continues throughout their professional careers.1 Providers have begun to recognize the need for plain language communication, and some attempts are being made to advocate for improving patient-provider communication.9 This need for change in communication patterns is further being bolstered as the health care system begins to move away from a ‘doctor knows best’ model to one where patients must partner with providers to care for themselves. 10 In addition to the routine challenges this system change brings about, patients with low literacy skills are further saddled with the responsibility of recognizing and communicating their lack of understanding.
Community Background
Guilford County, North Carolina has a total population of 451,905and is an unusually diverse community. At the beginning of 2006, the population includedapproximately 65,000 immigrants, from more than 115 countries and speaking over 136different languages. The school system reported 6500 English for Speakers of Other Languages (ESOL) students in 2007, a little more than half of whichwere Spanish speakers. The next most common languages reported in descending order were Vietnamese, Arabic, Hindu/Urdu, Korean, French, Lao, Rade, Khmer, and Chinese.11 In addition to a rich immigrant community, Guilford County includes residents who are black (31%), white (64%), Latino (6%), and Native American (.5%). This vibrant community is growing rapidly, has a slightly higher median household income than the state, and includes both urban and rural areas. About 15% of the population lives below the federal poverty level.
In the summer of 2005, the county’s adult literacy agency, Reading Connections, convened a large group of community members to begin addressing health literacy as a community issue. The original invited group included xxx individuals, representing xx community organizations. The group met monthly during the summer and early fall of 2005 to assess community strengths, resources, gaps, and needs. This process was facilitated by an outside, paid advisor, who was familiar with adult literacy. These beginning steps were funded by a small grant from a community health foundation of $xxxx. As with most community coalitions, there were varying degrees of interest and commitment to the issue, and by September, a core group of individuals had emerged to do the work. These founding members included Reading Connections, Lutheran Family Services, Guilford County Department of Public Health, Greensboro Area Health Education Center, Community Care Network and the University of North Carolina at Greensboro. Though other partners have filtered in and out of the initiative over the years, these organizations have maintained continual contact with the health literacy issue and have participated as decision-makers in the initiative.
Community Assessment
Early in the process, group members decided to complete a formal assessment of the community for health literacy. At the same time, it was determined that it would be most appropriate to concentrate on community members perceived to be most in need of assistance with health literacy. The group defined the priority groups as those with literacy challenges, and those whose first language was not English. Based on those priorities, the initial assessments included members of these communities and health care providers who served them. The assessments were conducted by the Center for Youth, Family & Community Partnerships at the University of North Carolina at Greensboro, in collaboration with multiple community organizations. The community assessment was funded by the Weaver Foundation at $xxxxxx; the small assessment budget was augmented by in-kind donations of staff and graduate assistantships from UNCG and Reading Connections. All research involving human participants was approved by the Institutional Review Board at the University of North Carolina at Greensboro.
Health Care Provider Focus Groups
Three focus groups were conducted with physicians, nurses, health educators and practice administrators affiliated with the Moses Cone Health System. Most of the participants were principally responsible for primary care and included the indigent clinics, Hispanic clinic and Health Serve ministries of the hospital. Participants were highly aware of patient literacy and health literacy issues and noted that these issues were of very high priority to them. None of the participants systematically assessed patient literacy but noted that they had ways of telling when a patient had literacy issues, including excuses about forgetting glasses, eye problems, etc. Connections to poverty, learning disabilities and cognitive limitations were also drawn by participants.
When asked about the impact of low health literacy, participants believed that a strong connection exists between low literacy and poor health outcomes. Frequent medication errors, missed appointments, incomplete medical histories and higher rates of morbidity and mortality were mentioned. It was also noted that highly educated people can experience low health literacy when faced with emotional or overwhelming health issues, for example a cancer diagnosis.
Interestingly, there was a bit of a difference noted between the responses of the physicians and the “front-line” providers when asked about what they are doing to address patient literacy issues. Physicians responded that they are primarily in the stage of learning about the issue and are reading and talking with one another about it. The only tangible change they mentioned in practice was in writing down patient instructions instead of only offering verbal information. The nurses and health educators systematically offered more practical solutions to patients, including teach-back instruction methods, offering low literacy or Spanish language written materials, providing pill boxes or other devices for medication compliance, using pictorial instructions, and using real-life examples for teaching (for example actual labels or food items for diabetes education).
A number of important issues were highlighted by the focus groups. Physicians were concerned with the amount of time, effort and money it would take to effectively teach patients and noted that the insurance companies (including Medicaid) were not willing to pay for this. They also were aware of issues of numerical literacy with patients and would like to see patient education to include ideas of risk and probability. Trust, especially within the African-American community, was an important issue that impacts patient care and compliance, and both physicians and ancillary care participants noted the importance of cultural sensitivity in communicating health information. Cultural needs and issues were also addressed by the group. One provider said that often people from other cultures do not understand that some conditions are life-long and that medicines must be taken over the course of a lifetime, not just temporarily. The physician then took responsibility for the issue saying, “That’s my fault for not saying, ‘You will have to take this forever’.”
Because illiteracy causes embarrassment and discomfort among both patients and providers, it was suggested that health literacy be considered a global issue, thereby increasing the comfort level for everyone. This could lead to a better flash assessment of a patient’s literacy level. It was further suggested that to do health care well would require a contextual understanding of each individual patient and to do this would require a complete revamping of the health care system.
Adult Literacy Student Focus Groups
Two focus groups were held with students pursuing the General Educational Development (GED) diploma at Guilford Technical Community College, Jamestown Campus and students of Reading Connections’ tutoring services. Participants included individuals who were completely illiterate to those who were seeking GED diplomas. These students were quite vocal about the difficulties they encounter with the healthcare system and expressed their frustration with not being able to read everything on the form at the doctor’s office. One female participant stated that all she could understand was ‘Name’ and ‘Date.’ If they did not know what a question was asking or what they were supposed to write, most said they just left the form blank. They also said that there were ‘too many questions’ and that answering the ‘why?’ questions was the most difficult for them.
Most participants expressed feelings of frustration and said they felt ‘bad’ when they could not understand what was being said to them by the doctor or nurse.
The vast majority of the students in this class said that they prefer ‘written words’ from their doctor over verbal instruction. One woman said the reasoning for this was so they could reread instructions in case they forgot what they were supposed to do and even ask for help from a family member in understanding the instructions.
Native English speakers have a different perspective of the American healthcare system and going to the doctor. Most of their discussion focused around the structure of the system rather than literacy issues. Most said that they do need help filling out the forms and that it is ‘embarrassing’ for them to ask. They prefer for their health information to be ‘written down’ instead so someone else can ‘read it to them later’. There was a general agreement that pharmacists were better about explaining instructions to them, and one person even commented that ‘1 out of every 100 doctors has good handwriting’.
They also said that ‘just because you are sick doesn’t mean you go to the doctor’. One of the reasons they do not go to the doctor every time they are sick is because, as one person put it, “When you say something is wrong they just don’t believe you. None of the medicines work and they don’t listen.” When asked what could make visiting the doctor a better experience one person replied “go to a better doctor”. Another suggestion was ‘eating properly’ so that it wouldn’t be necessary to go to the doctor in the first place.
The instructor for one of the courses added, “The population is aging and there are new problems arising, Medicaid D is messed up and people don’t know about it or what to do.”
Adult ESOL Student Focus Groups
Two focus groups were held with adults in basic and advanced ESOL classes at GTCC. Translation was a significant issue for non-native English speakers. When no bilingual providers or translators are available, children or other relatives are required to translate. This can lead to disruption in the hierarchy of the family and can cause power struggles within the family. When asked if they preferred to get health advice in person or over the telephone (in their native language), the majority said they would prefer face to face communication. When asked what could be done to make going to the doctor a better experience for them as ESOL, one man replied, ‘we need to learn English’, and everyone else in the room nodded in agreement.
The advanced level English language students had some different opinions of the healthcare system and they noted that their biggest concern was dealing with ‘front desk’ personnel. One woman spoke about her dentist’s office more than any other topic. She said that the front desk personnel were ‘hard to understand’ and that the dentist’s ‘helpers’ were not much better. However, the overall consensus of the group was that the doctors and dentists would take the time to speak slowly if it was necessary and they felt that they were receiving good care overall.
Pharmacists were highly rated by ESOL students as approachable and easy to understand. They said that the pharmacist ‘explained very clearly’ the directions for taking their medicine. One even said that the pharmacist was ‘better than the doctor’ when it came to explaining things. Most said that the pharmacist used ‘labels’ to help them take their medicine properly.
Regardless of understanding how to take the medicine, other communication issues can lead to problems. One woman said that she was given a medicine for high blood pressure and that she took it for 2 weeks. After her 2-week check up, her blood pressure had dropped considerably so she stopped taking the medicine and kept going to the gym. She said she was not asked again about her medicine regimen.
All of the students said that they do not trust the internet for health information and that they prefer for a provider to first verbally explain what is needed to them followed by written instructions. They mentioned that HealthServe was good about doing this. The first step towards good health in America, according to the students, is to have health insurance. One woman receives hers through her husband’s job; the others do not have any at all, which makes it very ‘difficult’.
Lay Health Advisor Focus Groups
Greensboro is home to the Center for New North Carolinians which provides advocacy and services to immigrants to North Carolina. One program of the Center trains community members as interpreters and community advisors on issues of health and health care. These lay health advisors provide valuable links to health care for new residents. Two focus groups were conducted with lay health advisors from the Asian and Hispanic communities. The Asian lay health advisors represented Montagnard, Hmong, Lao and Korean immigrants to the area.
Communication of symptoms was identified as a significant issue with the immigrant and refugee population. The lay health advisors noted that many individuals say only that they feel sick, but cannot describe specific symptoms. This makes it hard for the interpreter and the health care provider to help the individual. Also, one participant noted that recent immigrants sometimes expect too much from the physician. They believe that the doctor should be able to treat them immediately based on a particular symptom and don’t understand why the doctor asks so many questions. This may indicate a kind of mythology about what doctors are capable of doing. One LHA described this as, “total trust that the health provider knows everything.”