The Health Literacy Needs of People with Serious Mental Illness

Abstract

Background and Purpose: Health literacy (HL) is an essential skill (Kickbusch, 2008) for making informed decisions about one’s health and navigating complex health/mental health care systems. While a vast body of literature on health literacy exists, there is little research using a strengths-based perspective (McCormack, McBride, & Paasche-Orlow, 2016). Likewise, HL among people with serious mental illness (SMI) is understudied (Clausen, Watanabe-Galloway, Baerentzen, & Britigan, 2016), nor is it researched from a strengths-based perspective. The present qualitative study focuses on people with serious mental illness as experts to explore how they make medical decisions and navigate health/mental health care systems.

Methods: Purposive sampling was used to identify 14 participants (ages 31-64) who use or previously used community mental health services in the Pacific Northwest. In focus groups and individual interviews, participants were questioned about how they make medical decisions when they feel well, as well as when they feel distressed or confused, in both health and mental health settings. At the conclusion of focus groups and interviews, the researchers’ notes were reviewed with participants to ensure member checking. Transcripts were manually transcribed and constant comparative analysis was used to guide an iterative, inductive process to identify major themes.

Results: Participants were predominantly white females with a wide range of serious mental illnesses (bipolar, schizoaffective disorder, major recurrent depression, PTSD). Nearly all had multiple mental health diagnoses and co-occurring physical health problems. A major theme was the experience of having providers discount, dismiss, or ignore participants’ health/mental health needs. Participants also noted challenges, such as tracking time and understanding instructions, when experiencing distress due to their mental illness. In exploring how participants made medical decisions and navigated health/mental health systems, self-advocacy (e.g., being persistent about needs, changing doctors) was revealed as necessary to navigate complex systems, often at the cost of being labeled “a difficult” patient.

Conclusions and Implications: Study participants’ observations suggest that people with serious mental illness experience unique barriers to health literacy that are important to address at both provider and health system levels. Complicating the challenges of persistent negative stereotypes and epistemic injustices (Carel & Kidd, 2014), people with SMI also experience varying levels of health literacy when symptoms of their mental health condition cause challenges understanding or recalling instructions, feeling comfortable with taking medication or tracking time. To address these challenges, social workers and other health care providers must use methods such as “teach-back”(Williams, Davis, Parker, & Weiss, 2002) to check for comprehension. Engaging trusted family, loved ones, friends or peers to reassure people experiencing distress, and simplifying medication regimens also are important for social workers, other health care providers and health systems to implement. In order to develop relevant HL interventions and supports, future research must be grounded in collaboration with people living with mental illness as experts in their own health care.