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

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 (< or =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.

Health Literacy Instrument in Family Medicine: The "Newest Vital Sign" Ease of Use and Correlates

“…Previous studies found similar acceptability. 33,34 The NVS was administered, on average, in less than 3 minutes, which demonstrates the utility of the NVS in primary care and which is consistent with prior findings. 35 The NVS would not be administered during every patient visit, but our data suggest that periodic reassessment should prove helpful to target patient-provider communication appropriately.…”

Different Measures, Different Outcomes? A Systematic Review of Performance-Based versus Self-Reported Measures of Health Literacy and Numeracy

“…Another limitation is selection bias within the included studies; we expect that low literacy patients, particularly those with fewer resources, may have declined study participation for fear of embarrassment or shame, a concern reported by other studies. 18,43 Had these patients participated, studies may have yielded different results. Further, in following the 2011 AHRQ protocol for relevant outcomes, we did not include studies examining the relationship of health literacy and knowledge.…”

“…They also have the advantage of being shorter and potentially less embarrassing for patients. 8,18,19 They therefore could allow for more efficient research about health literacy, as well as fewer negative feelings for patients involved in health literacy research. However, it is currently not clear whether self-reported measures have the same relationship to outcomes as the performance-based measures.…”

Brief Health Literacy Screening Items Predict Newest Vital Sign Scores

“…17 Second, specifically testing HL may cause patients to feel shame and/or embarrassment. 18,19 For these reasons, brief, onesentence items have been developed and tested to quickly identify in a non-threatening manner patients who are potentially at risk of having limited general HL and numeracy skills. 20 -25 This article was externally peer reviewed.…”