Health Literacy and Serious or Persistent Mental Illness: A Mixed Methods Study

Abstract

Background: Health literacy is increasingly recognized as a major determinant of health; however, our insights into the health literacy strengths and needs of adults living with serious or persistent mental illness remain limited by a notable lack of research in this area. Improving our understanding is important because people in this group are especially vulnerable to numerous negative health outcomes, many preventable. Objective: To assess the health literacy strengths and needs of people living with serious or persistent mental illness in terms of their ability to acquire, understand, and use information about their illness and the health services they require. Methods: A cross-sectional convergent mixed methods design guided by the Ophelia Access and Equity Framework. People diagnosed with serious or persistent mental illness were offered participation. Quantitative and qualitative data was collected using questionnaires (Health Literacy Questionnaire [HLQ], World Health Organization [WHO-5]) and semi-structured interviews. Hierarchical cluster analysis identified and grouped participants with similar health literacy scores into mutually exclusive groups, for the development of clinical vignettes. Key Results: Participants struggled most with the appraisal of health information (HLQ mean 2.72, standard deviation [SD] .63 [scale 1–4]) and navigating what they often perceived to be a confusing health care system (HLQ mean 3.29, SD .79 [scale 1–5]). On the other hand, most participants reported positive experiences with their health care providers (HLQ mean 3.19, SD .62 [scale 1–4]) and generally felt understood and supported. The cluster analysis suggests we should not assume people living with serious or persistent mental illness have homogeneous HL strengths and needs, meaning a one-size-fits-all solution for improving health literacy in this diverse group will likely not be a successful strategy. It will be important to explore solutions that embrace patient-centered care approaches. Conclusions: This study is one of only a handful assessing the health literacy strengths and needs of people living with serious or persistent mental illness. By collecting both quantitative and qualitative data, then analyzing the results using sophisticated cluster analysis methods, the authors were able to develop clinical vignettes per the Ophelia Framework that offer results in a practical way that can be readily understood and acted upon by stakeholders. We found that the HLQ is a measure of HL that is acceptable to mental health clients, and our findings provide preliminary data on the use of this instrument in the mental health population. [HLRP: Health Literacy Research and Practice. 2023;7(1):e2–e13.] Plain Language Summary: This study explored the health literacy strengths and needs of people living with serious or persistent mental illness. The results showed a mix of strengths and needs among our participants, though several consistent themes emerged. Most of our participants felt understood and supported by their health care providers, but many often struggle with judging the quality of health information and finding their way through the health care system.