Background Document on Literacy and Health

1.2 The links between health and literacy

How does this very brief portrait of literacy in Canada and the United States relate to the realities of patients and health care? Health education and promotion are primarily carried through print materials written at a tenth grade or higher reading level, readability levels that low-literate adults cannot comprehend. Most health materials are hard to read. They use terms, concepts and illustrations that are not familiar to lower skilled readers. Thus, for almost half the Canadian population, access to usable and relevant health information and health education is limited. This problem is aggravated by the fact that health education and health promotion have become increasingly important as chronic disease has become a major cause of sickness and death, and the locality of care has shifted to outpatient settings (Hohn, 1998).

There is abundant evidence to support the argument that low literacy has a major negative impact on health. The early research on health and literacy conducted by the Ontario Public Health Association found that persons with low literacy skills as less healthy due to a number of specific health and literacy linkages. Researcher Burt Perrin looked at direct and indirect effects of literacy on health (Perrin, 1998):

Direct effects of low literacy:
The direct impacts on health are attributable to the inability to access vital health information presented in print form. The following situations are cited:

1. Persons with low literacy skills cannot read medication labels and sometimes take medication incorrectly. This applies to both prescription and over-the-counter medications.
2. Persons with low literacy skills have problems to comply with medical directions (ex. a diabetic following a prescribed treatment).
3. Persons with low literacy skills cannot prepare formula properly and may improperly feed infants.
4. Persons with low literacy skills may not understand safety precautions in the workplace. Furthermore, research in the United States has shown that:
5. Persons with low literacy skills cannot read written instructions for preventative care, self-care and follow-up care after an illness or injury.
6. Persons with low literacy skills have problems understanding appointment slips, informed consent forms, discharge information and oral instructions.

1. Persons with low literacy skills are more likely to live in low quality housing and in unsafe areas, with higher rates of pollution and environmental hazards. They are less likely to have safety features such as smoke detectors.
2. Persons with low literacy skills are less likely to request care early in the course of their illness.
3. Persons with low literacy skills smoke more, have poorer nutrition and exercise less.
4. Persons with low literacy skills are less likely to have had a PAP test, to practice breast self-examination or a blood pressure check.

Continuing research suggests that the most serious impacts of low literacy on health status are the indirect ones. Literacy problems affect health in less direct ways by reducing access to well-paid employment and hence increasing the likelihood of poverty and its related stresses, and by diminishing self-esteem and self-confidence (Perrin, 1998).

According to a 1998 report by the Canadian Council on Social Development, between 22% and 50% of adults with lower levels of literacy live in low-income households, compared with only 8% of those with high-level literacy skills. Women with lower level literacy skills are twice as likely as men to live in low-income households (quoted in Norton and Campbell, 1998, p.6).

There is considerable research demonstrating the links between low literacy, poverty and ill health. Therefore, groups that most likely need health education and promotion the most are the groups least likely to benefit from the current practice (Hohn, 1998).

For the purpose of this document, we wish to use the term hard-to-reach patients, which is broader than low-literate patients. Hard-to-reach patients include low-literate patients, patients with learning disabilities and patients facing language and cultural barriers. High literate individuals can become low-literate patients because of cognitive or physical disabilities such as visual impairment, difficulties with oral processing, etc. Many disabilities can seriously diminish or block the capacity to read, understand and apply health education information. Language and cultural barriers can also cause health literacy challenges. Patients who do not have minimal language skills in English or French and who have another first language face serious challenges in processing and applying health information. Someone may be high literate in Chinese or Swahili, but low-literate in English or French. But an immigrant or a refugee may also be low-literate or illiterate in both mother tongue and English or French. In addition, some patients face cultural barriers, having views and beliefs about health very different from our North American views. All these factors directly affect the capacity to understand and use health information.

As noted above, written materials are often above the comprehension level of many patients. In 1995, a study of more than 2600 patients in the United States used a diagnostic test of functional health literacy (please see definition in annex 1). This test measured the patient's ability to understand and read medical instructions and health care information in the form of texts and numerical information. In the study, up to 33% of patients did not adequately understand instructions for a common radiographic procedure written at a fourth-grade level. From 24% to 58% did not understand directions to take a medication on an empty stomach. More than 20% of patients incorrectly answered questions regarding information on a routinely used appointment slip. In a more recent study, patients with low literacy skills suffering from diabetes and hypertension were unable to effectively control the physical manifestations of their illness even after receiving educational material and/or classes (Williams, et al., 1998).

Health care providers are concerned because patients who misunderstand their diagnosis and treatment plans usually exhibit poor compliance (Mayeaux, 1996). There are also legal implications and ethical issues. Case law examples have been collected on the issue of providing health care information and handling consent forms with low-literate patients (Brandes, 1996). Some health care professionals have been sued and found guilty of not having provided sufficient medical information in a manner that the patient could understand. These cases provide evidence that health providers cannot assume that because they gave information orally and handed out additional written information, the patient has understood what is needed.