Objectives: To understand the difficulties that patients with poor reading ability have interacting with the health care system and to identify the coping mechanisms they use to deal with these problems.
Design: Focus groups and individual interviews with patients who are illiterate and patients with low literacy.
Setting: Two large, urban public hospitals.
Participants: Sixty patients with marginal to poor reading abilities as measured by the Rapid Estimate of Adult Literacy in Medicine were interviewed in focus groups or individual interviews.
Measurements and main results: Patients with low literacy harbor a deep sense of shame, which is reinforced by hospital staff who become frustrated or angry when someone cannot complete a form or read instructions. Seeking medical care is intimidating for patients with low literacy because they cannot understand signs and registration forms. Many patients recounted serious medication errors resulting from their inability to read labels. To cope with these problems, the patients with low literacy rely heavily on oral explanations, visual clues, and demonstrations of tasks to learn new material. Most also use a friend or family member as a surrogate reader.
Conclusions: Patients with poor reading ability have important problems accessing the health care system, understanding recommended treatments, and following the instructions of providers. Because of their shame, patients with low literacy may be unwilling to disclose their problem to health care providers, and screening tests of reading ability may be necessary to identify those who need special assistance. Patients' coping mechanisms give insight into possible interventions that may improve their interactions with the health care system.