Chapter 1: What Is Health Literacy? An Overview of a Complex Problem
It is a common misperception that low health literacy is simply a lack of health knowledge or inadequate reading (literacy) skills. In fact, everyone, regardless of education level, intelligence, or socioeconomic status can experience challenges in processing medical information, especially when undergoing the stress of dealing with a serious illness.
Shreya is an uneducated 30-year old mother. When Shreyas four-year old daughter complained of ear ache and fever because of otitis media, her doctor prescribed her an antibiotic, in the form of a syrup. Shreya promptly poured the medicine in her daughters painful ear.
You may feel a rush of sympathy for Shreya and her unfortunate daughter. You may think - this would never have happened if she had been literate! You may also feel superior, "Who would make such a stupid mistake." But remember that just because you are more educated doesnt mean that you are immune to committing medical errors or misunderstanding medical information! Do you always understand everything your doctor tells you? How well informed are you about the side effects of the medicines that you are prescribed? Do you read the information leaflet supplied with your medicines? Do you understand the fine print in your health insurance policy? Can you make sense of your hospital bills?
Being educated and being health literate are two different things. Health literacy is much more than just a measure of the level of knowledge you have about health. Just because you can read and write doesnt mean you can make sense of health information, because this is often presented as complex medical jargon. The US Department of Health and Human Services (2010) defines health literacy as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions for themselves.
It is a common misperception that low health literacy is simply a lack of health knowledge or inadequate reading (literacy) skills. In fact, everyone, regardless of education level, intelligence, or socioeconomic status can experience challenges in processing medical information, especially when undergoing the stress of dealing with a serious illness. Just like doctors need an MD degree in order to practice medicine, patients also need to acquire basic health literacy skills to receive good medical care.
For example, after your annual health check-up, you get a file full of medical test reports, filled with daunting scientific terms and numbers. Do you know what they really mean? How often have you had questions you wanted to ask your doctor, but were afraid to do so, because you didnt want to look like a fool? Have you been frustrated by the fact that your health insurance company refused to pay for your surgery, claiming you had a pre-existing condition? Have you felt lost and powerless because your father is in the intensive care unit (ICU) and no one is assigned the responsibility of telling you what is happening?
If so, read on, because the diagnosis is clear - you are experiencing poor health literacy, and this book will help you tackle this extremely common condition.
For starters, it is important to distinguish health literacy from health education and health communication. Health literacy is the goal and is a test of your functional skills; health education on the other hand is just one tool for reaching that goal. Similarly, the terms "health literacy" and "literacy" cannot be freely interchanged. Health literacy encompasses more than just the ability to read written materials; it implies understanding the information so that you can take an active role in managing your health.
In addition, health literacy gives you the skills to:
- Interact confidently with doctors, nurses, and pharmacists
- Find reliable health information on the Internet
- Understand different treatment options so you can take a well-informed decision
- Understand risks and benefits of your chosen treatment option
- Complete health insurance and medical history forms in an efficient and knowledgeable fashion
In the USA, the National Assessment of Health Literacy is conducted every 10 years, and uses the following sample tasks in their assessment of health literacy skills:
|SKILL LEVEL||HEALTH LITERACY TASK|
Adapted from: https://nces.ed.gov/pubs2006/2006483.pdf
In India, our health literacy standards are much lower. Indeed , our government defines a person as being literate if he can merely sign his name. Obviously, in this day and age, this is grossly inadequate! Illiteracy in India magnifies the health literacy problem several folds and makes this a much more difficult goal for us to achieve.
The earliest definitions of health literacy were clinical in nature because they were provided by healthcare professionals, and were focused on the patients ability to read and understand the medical information handed out to them . However, today the meaning has evolved to reflect a broader and more enabling conceptualisation. Australian researcher Don Nutbeam (Nutbeam, 1999) pointed out that the traditional definition of health literacy misses out on the deeper meaning and purpose of literacy. Nutbeam gives a three-level definition that defines health literacy not simply as a measure of reading and writing skills but also as a strategy for empowerment. The three levels that Nutbeam identifies are:
- Basic/functional literacy - sufficient skills to be able to function effectively in daily life;
- Communicative/interactive literacy - advanced skills that, together with social skills, can be used to actively participate in healthcare decisions;
- Critical literacy - Advanced skills that can be applied to critically analyse information and use it to execute greater control over public health and manage it for the entire community.
From the above definitions, it is clear that health literacy may be linked to general literacy skills but general literacy skills do not necessarily imply health literacy. Health literacy incorporates health numeracy, which is reflected in a wide range of skills, from checking your blood pressure, tracking your cholesterol levels and counting calories to critical decision making with regard to the risks and benefits of a particular treatment plan. In addition, you require math skills to choose the right health insurance plan, and making sense of your hospital medical bills these days seems to require an advanced degree in statistics. Indeed, numeracy skills are important for doctors as well, who often have limited understanding of medical statistics, which impairs their ability to apply evidence-based medicine to their patients.
All said and done, since the field of medicine is ever-evolving, health literacy needs to be dynamic too. A health literate patient should be able to discard out-dated information and learn new information on an on-going basis, as medical science evolves. Reflecting this need, a recent Canadian Expert Panel has given the following definition of health literacy:
The ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life course. Thus, health literacy demands not just the ability to read, but also the skills of listening, analysing and decision making, and the ability to apply these skills in the health context.
In the final analysis, while experts may argue about how to define health literacy, everyone agrees that it is in short supply. Both low literacy and illiteracy can be serious health hazards, because of the risks involved in not understanding your doctors orders; or not being able to communicate your symptoms and personal preferences.
Reasons for limited health literacy skills include:
- Lack of educational opportunity - for example, people who have not completed high school Learning disabilities
- Cognitive declines in older adults
- Limited English proficiency (this could be a significant problem in India, where the majority of patient educational materials are still available only in English, even though this remains a foreign language for most Indians.)
Even people with advanced literacy skills can be overwhelmed by the glut of health information available in public domain. Medical science develops rapidly, and most of us have read something about our bodies in the past that may appear to be incorrect based on new scientific information. Remember, once upon a time it was believed that stress and spicy foods caused peptic ulcers, but now a bacteria called H. Pylori has been identified to be the main culprit behind stomach ulcers!
Culture and Health Literacy
Culture is the lens through which individuals view the world and influences the way we think and react to a particular situation. It plays a major role in taking decisions regarding ones health and illness, because these decisions influence what you expect from your doctor - and what he in turn expects from you. If both you and your doctor come from the same culture and see eye to eye, the interaction between the two would be smoother. However, India being one of the most culturally diverse countries in the world, the cultural competency of your doctor affects the quality of health care he is able to provide you.
For example, many paediatricians often dont know that in Indian villages chicken pox is viewed as a sign of a Goddesss anger. Fearing the wrath of the Goddess, parents usually avoid taking their children to doctors and seeking treatment, unless serious complications set in. The doctors then jump to the wrong conclusion that the parents are irresponsible, and are not able to take care of their childrens medical needs properly because they are uneducated. In this situation it is difficult for the doctor and the patient to see eye to eye , because both of them come from very different cultural backgrounds. Until the doctor learns to respect the cultural practises of his patients, he will not be able to persuade them to change their ways.
Similarly, people with mental illness are thought to be possessed by evil spirits and are marched off to faith healers and temple doctors rather than psychiatrists. This does not mean that the family is foolish - they simply do not believe that the doctor has better treatment options to offer, and are much more comfortable practising what their forefathers have done for generations ! In order to make them see the truth without hurting their sentiments , the doctor needs to understand their perspective. A dramatic example of how an inability to bridge these cultural gaps can harm patients is recounted beautifully in the book, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures by Anne Fadiman, that chronicles the struggles of a Hmong refugee family from Laos, and their harrowing experience with the health care system in USA. This book tells the story of Lia, who was diagnosed with severe epilepsy, and the cultural conflict that obstructs her treatment because of the dichotomy between the Hmongs perceived spiritual beliefs and the Americans scientific understanding of the ailment.
Remember that the healthcare world is a complex eco-system, a culture in itself - one that can come across as foreign to patients. Healthcare professionals are trained for many years in an academic and clinically-detached environment that may distance them from local cultural concerns. Doctors anyway have a language all their own that is unique to their institution or specialty. Bridging these linguistic or cultural gaps may be difficult for patients, regardless of their educational levels.
In this context, it is interesting to see how the concept of health literacy has emerged from two different streams - as a clinical "risk" and as a personal "asset". In the former case, doctors and hospitals are being educated about the dangers of poor literacy skills, and in response are implementing changes in their clinical practice that can help low literate patients navigate the complex healthcare system.
On the other hand, as a refreshing contrast, health literacy as an asset finds its roots in educational research, adult learning, individual empowerment and political activism. This concept is focused on the development of skills that enable people to exert greater control over their health status. A good example is how AIDS activists banded together and learned to galvanise a sluggish healthcare system, as a result of which the medical care they now receive has improved by leaps and bounds.
Health literacy is a complex, multi-faceted issue that requires a multi-disciplinary approach. The term health literacy itself implies a junction, a straddling of two sectors: adult education and health. It is everyones problem - which is why it seems to be no ones problem. This is a challenge that must be tackled, because the rewards are well worth it. While no one person can do it alone, the good news is that if we all work together, we can leave a significant impact. This is a battle worth fighting - not only for our own sakes, but for the sake of our children as well.