Patients' Shame and Attitudes Toward Discussing the Results of Literacy Screening

TLDR

The study examined patients’ willingness to have their reading ability recorded in medical records and the shame or embarrassment linked to such disclosure. Structured interviews with 283 primary care patients at an urban public hospital assessed literacy using the REALM and self‑reported shame or embarrassment via an oral questionnaire. About 48 % of patients with reading at or below third grade reported shame, compared to 19 % and 6 % for higher levels, and more than 90 % of low or marginal literacy patients said it would help if providers knew, highlighting the need for providers to recognize the shame that literacy screening can evoke.

Abstract

We investigated patients' willingness to have their reading ability documented in their medical records and the degree of shame and embarrassment associated with such disclosure. Structured interviews were conducted among a consecutive sample of 283 primary care patients at an urban public hospital. Patients' literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM). Self-report of degree of shame and embarrassment related to literacy skills was measured using an orally administered questionnaire. Fifty-one percent of patients had low literacy skills (≤sixth grade) and 27.9% were assessed as having marginal literacy (seventh–eighth grade). Half (47.6%) of patients reading at or below the third-grade level admitted feeling ashamed or embarrassed about their difficulties reading, compared with 19.2% of those reading at the fourth–sixth-grade level and 6.5% of those reading at the seventh–eighth-grade level (p < 0.001). More than 90% of patients with low or marginal literacy reported it would be helpful for the doctor or nurse to know they did not understand some medical words. Patients with limited literacy were more likely to report feelings of shame as a result of disclosure (p < 0.05). Health care providers must recognize the potential shame patients might experience as a result of literacy screening.