When your patient can't read: Working with illiterate patients

By Samar Mahmoud, PhD | Fact-checked by Barbara Bekiesz
Published May 31, 2022

Key Takeaways

  • Patient education usually involves written materials, given to patients to help them understand their healthcare needs.

  • Low health literacy is highly prevalent and has been associated with nonadherence, risk of hospitalizations, and poor outcomes.

  • Healthcare providers can use alternative means of communication to ensure that patients comprehend their healthcare needs and responsibility to meet those needs.

Written materials are a crucial element of patient health education, the process by which patients are taught about their healthcare situations and needs.[]

However, discrepancies have been reported between the reading level of these materials and that of many patients. This is problematic, as patients who can’t read instructions and information regarding their care are unable to fully participate in it and make informed decisions.

Prevalence of low health literacy

Health literacy is defined as an individual's ability to read, understand, and act upon health-related information.[]

The prevalence of low health literacy is surprisingly high, with 77 million people in the US lacking health literacy, putting them at increased risk for problems in a healthcare setting.

Around 30% of adults 65 years or older lack basic health literacy skills.

Low health literacy has been linked to nonadherence to medical treatments, increased risk of hospitalizations and rehospitalizations, malpractice suits, poor clinical outcomes, increased medication errors, and heightened healthcare costs.

How to assess health literacy

Due to the stigma associated with low health literacy levels, patients may not always disclose that they don’t understand instructions. The level of education listed on an individual's admission form may not be a good indicator of their level of health literacy, as years of schooling aren’t necessarily indicative of an individual’s current literacy skills.

Healthcare providers can evaluate patients by using formal health literacy assessment tools. One such tool is the Rapid Estimate of Adult Literacy in Medicine Short Form, also known as the REALM-SF.[] It’s available from the Agency for Healthcare Research and Quality.

In addition to formal tools for assessing health literacy, healthcare providers should be on the watch for these red flags indicating low health literacy:

  • Incomplete or unfinished healthcare forms

  • Problems with understanding medication and treatment instructions

  • Failure to show up for follow-up appointments

  • Reluctance to read health information in your presence

  • Inability to explain or share what they’ve read or learned

  • Irregular serum drug levels

  • Inappropriate behavior such as abruptly leaving the office or hospital when asked to fill out health forms

Alternative strategies

The ultimate goal of patient health education is to make sure patients are aware of their healthcare needs and can participate in the dialogue about their care to ensure the best clinical outcomes. If you find your patient has low health literacy, be empathetic and respectful, and tailor their care by recognizing that everyone has unique learning needs.

Ask patients about their learning strategies and what techniques allow them to learn new information.

Use short words and sentences with all communication, whether verbal or written, and avoid using any medical jargon.

Use lay terminology whenever possible. For example, instead of saying “hypertension” and “myocardial infarction,” say “high blood pressure” and “heart attack,” respectively.

You can also use illustrations, audio or videotaped information, charts, graphs, and diagrams to supplement verbal and written information.

The power of pictures

In a report published in BMJ Open Quality, researchers found that discharge prescriptions that utilized pictures and symbols, instead of words, increased comprehension among illiterate patients in Lahore, Pakistan.[]

The investigators had noticed very poor medication adherence in the patient population.

Baseline measurements revealed that nearly half of the hospital’s patients were illiterate, with only 5% to 12% able to comprehend handwritten discharge instructions.

However, that number increased to 23% to 35% of patients able to comprehend discharge instructions after healthcare providers started utilizing pictures and symbols instead of handwritten notes.

What this means for you Low health literacy is an impediment to patients comprehending and playing an active role in their own medical care. Recognize that written instructions may not be appropriate for every patient. Tailor instructions to patients' unique learning needs and use non-traditional methods of communication, such as illustrations or graphics. Remember that the ultimate goal of patient health education is to ensure that patients can comprehend their medical needs.

Related: Cultural competency: How to work with a patient who is not like you

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