Shame and health literacy: The unspoken connection

Illiteracy is a well known national crisis, yet relatively little research has focused on how low literacy affects patients' health care experiences. The purpose of this study was to determine the relationship between shame and low functional literacy in the health care setting. It hypothesized that many patients with low literacy may not admit they have difficulty reading because of shame. Patients who presented for acute care at a large, public hospital in Atlanta, Georgia were interviewed. A total of 202 predominately indigent African-American patients completed a demographic survey, the Test of Functional Health Literacy in Adults (TOFHLA) and answered questions about difficulty reading and shame. Of the 202 patients interviewed, 42.6% had inadequate or marginal functional health literacy. Patients with low literacy were more likely to be male (P < 0.05), have less than a high school education (P < 0.01) and be over the age of 60 (P < 0.01). Of those patients with low literacy, 67.4% admitted having trouble reading and understanding what they read. Almost 40% (n = 23) of patients with low functional literacy who acknowledged they have trouble reading admitted shame. Of the 58 patients who had low functional health literacy and admitted having trouble reading, 67.2% had never told their spouses, and 53.4% had never told their children of their difficulties reading. Nineteen percent of patients had never disclosed their difficulty reading to anyone. Many patients with reading problems are ashamed and hide their inability to read. Shame is a deeply harbored emotion that plays an important role in understanding how low literate patients interact with health care providers. Further research is needed to understand how providers should deal with the shame associated with low literacy.