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Role of Shame and Concealment in Patient-Provider Communication Among Individuals With Low Health Literacy: Protocol
Tsuyoshi Okuhara1, Hiroko Okada1, Rie Yokota2
1Department of Health Communication, School of Public Health, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, Japan, 81 1-3-5800-6549.
Background:
Health literacy, defined as the ability to obtain, understand, evaluate, and use health information, influences health behaviors and outcomes. Low health literacy (LHL) is associated with misunderstandings of treatment instructions, poor adherence, and inadequate preventive behaviors, all of which contribute to health disparities. Although universal precautions such as plain language and the teach-back method are recommended, recent studies indicate that these measures alone cannot fully address the challenges faced by patients with LHL. Previous qualitative studies have examined psychosocial processes through which shame and concealment shape patient-provider communication; however, these findings remain fragmented across settings and disciplines, and no scoping or systematic review has yet synthesized this evidence.
Objective:
This review aims to map how patients with LHL experience shame and concealment, how health care providers' behaviors and communication influence these experiences, and how these processes affect patient-provider communication and care. It also seeks to identify strategies to reduce the impact of shame and concealment in clinical practice.
Methods:
This review will be conducted and reported in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. PubMed, MEDLINE, CINAHL, PsycInfo, Web of Science, and Academic Search Complete will be searched using terms related to health literacy, patient-provider communication, and qualitative research. Qualitative and mixed methods studies with qualitative findings will be included, and quantitative-only studies will be excluded. The participants may include patients, health care providers, or both. Data extraction will include specific manifestations of shame (eg, embarrassment, fear of judgment, and self-blame), concealment behaviors (eg, silence, avoidance, and impression management), provider communication behaviors (eg, time pressure, use of jargon, dismissiveness, and validation), and key findings. The accuracy of the data will be verified by multiple reviewers. Data will be synthesized using thematic synthesis, with the findings presented in tables; narrative synthesis; and a conceptual model depicting the interactions among shame, concealment, and provider communication. The findings will describe how shame and concealment are conceptualized, how they shape communication and care, and strategies suggested to reduce their effects. A conceptual diagram will illustrate these dynamics.
Results:
This study was funded in April 2025. Database searching is scheduled for October 2025, with study selection and data extraction planned for November 2025. As of September 2025, no data extraction has been completed. Data synthesis is expected to be finalized by December 2025, and results are planned for publication between June and August 2026.
Conclusions:
This will be the first scoping review to systematically map the roles of shame and concealment in health care communication among patients with LHL. Synthesizing qualitative evidence will provide insights into relational dynamics, inform professional education and training, and guide organizational- and policy-level strategies to promote equitable and patient-centered health care communication.
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