Health Literacy: A Review

Miranda R. Andrus, PharmD, Mary T. Roth, PharmD


Pharmacotherapy. 2002;22(3) 

In This Article

The Health Care Experience of Patients with Inadequate Functional Health Literacy

The prevalence of inadequate literacy translates to many difficult, frustrating, and disturbing experiences for patients in the health care environment.[2,45,46] In a study designed to explore these encounters, 60 patients with very low REALM scores were interviewed about their experiences functioning in the health care environment.[46] The dominant, prevailing theme was the sense of shame regarding reading difficulties. Six important problems were identified as barriers commonly faced by patients in their interactions within the health care system: navigation, or finding the hospital and locating departments within the hospital; completion of forms or registration to receive medical care; interpretation and application of dosing instructions; communication between providers and patients; interpretation of appointment slips, which often requires assistance from family members to decipher the date and time; and coping strategies of patients who have received negative treatment by health care workers in the past when they admitted they had difficulty reading and needed assistance. The following are quotes from patients enrolled in this study:

I had some papers, but I didn't know they were prescriptions, and I walked around for a week without my medication. I was ashamed to go back to the doctor, but a woman saw the papers I had and told me they were prescriptions. It's bad to not know how to read.

All these problems, not knowing how to read, it feels like being blind, ignorant, not able to understand, to explain or ask people. If there are many people around, I feel embarrassed to tell the doctor I cannot understand. I feel really bad, that I am not worth anything, that there is no reason for me to be in this world, that I came into this world only to suffer.

What I feel, in my case, if there could be a person that could talk like us, and be kinder, and to ask us if we can read, or offer to fill it out, and with a smile, so we feel the person supports us. But if we see their hard faces, how could we ask for help to fill out the form?

Several studies have explored the perspectives of patients with low literacy on their inability to read.[47] In one study, participants described exposure of their inadequate reading abilities as a risky situation but identified an opposing force of perceived risk if they did not disclose their inadequate literacy during a hospitalization. Reports of feeling embarrassed or stupid were common, but past experiences reinforced that a lack of knowledge could negatively affect the ability to function in a health care setting. These participants expressed an expectation that the hospital environment should be a safe and caring place, where health care providers are knowledgeable, approachable, compassionate, and respectful of patient confidentiality. Participants agreed that health care professionals should be aware of a patient's literacy status but admitted that some emotional discomfort might result if screening tools such as the REALM are used.

Patients with inadequate health literacy often harbor a deep sense of shame and may not admit that they have difficulty reading, which may result in a delay in seeking medical care. A study, which recruited 202 patients from the emergency department and walk-in clinics at a public hospital, was conducted to explore the relationship between low health literacy and shame.[48] The survey included administration of the TOFHLA and questions regarding reading difficulty and shame. The TOFHLA scores revealed that 42.6% of patients had inadequate or marginal functional health literacy, but only 67.4% of this group of patients admitted they had trouble reading or understanding what they read. Of those who admitted they had difficulty with these skills, 39.7% admitted shame. Patients in both the adequate and low literacy groups suggested similar coping mechanisms for patients who have difficulty reading, such as bringing along someone who can read, making excuses, watching others, or asking staff for help. When patients who admitted having difficulty reading were asked, "Who knows you have difficulty reading?", 67.2% had never told their spouses and 19% stated they had never disclosed their reading difficulties to anyone. More than three-fourths of patients said they never brought anyone who could read to the hospital with them. This sense of shame and the stigma associated with illiteracy may significantly limit the effectiveness of the health care experience of these patients.