THE HEALTH-CARE EXPERIENCE OF PATIENTS WITH LOW-LITERACY

Objectives: To understand the difficulties that patients with poor rea ding ability have interacting with the health care system and to ident ify the coping mechanisms they use to deal with these problems. Design : Focus groups and individual interviews with patients who are illiter ate and patients with low literacy. Setting: Two large, urban public h ospitals. Participants: Sixty patients with marginal to poor reading a bilities as measured by the Rapid Estimate of Adult Literacy in Medici ne were interviewed in focus groups or individual interviews. Measurem ents 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. See king medical care is intimidating for patients with low literacy becau se 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 litera cy rely heavily on oral explanations, visual clues, and demonstrations of tasks to learn new material. Most also use a friend or family memb er as a surrogate reader. Conclusions: Patients with poor reading abil ity have important problems accessing the health care system, understa nding recommended treatments, and following the instructions of provid ers. Because of their shame, patients with low literacy may be unwilli ng to disclose their problem to health care providers, and screening t ests of reading ability may be necessary to identify those who need sp ecial assistance. Patients' coping mechanisms give insight into possib le interventions that may improve their interactions with the health c are system.