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The role of health literacy in chronic respiratory disease management Shum, Jessica


Background: Health literacy (HL) is defined as the ability to access, understand, evaluate, communicate, and use health information to make informed health decisions. Studies have reported a relationship between low HL and less health-related knowledge, poorer skills in taking medication, and treatment non-adherence. Despite this, measurement of HL (in particular to the abovementioned domains) is still in its infancy and the impact of HL on self-management (via a key informant lens) has yet to be studied. Objectives: The main aim in this thesis was to incorporate both sides of the HL equation (patients and key informants) into investigating the role of HL in chronic respiratory disease management. This led to two objectives: 1) To identify HL tools used in asthma and/or chronic obstructive pulmonary disease (COPD) management and examine their characteristics; and 2) To assess key informants’ perspectives re barriers to asthma/COPD self-management and the solutions to address such challenges. Methods: A systematic review was undertaken to review the literature on HL tools that assessed any of the five domains on asthma/COPD patients. Following this, a qualitative study was conducted with national and international key informants (e.g., health care professionals (HCPs), researchers, and policymakers) who were involved in the care of asthma/COPD patients to determine perceived patient barriers to competent self-management and the possible solutions to overcome these barriers. Results: The review identified 65 tools with a majority assessing ‘understanding’ and a minority on ‘communication’. Only two tools assessed all five domains and less than half had been validated. Thematic analysis of the 45 interviews resulted in seven barriers surrounding the themes of time, information overload, and jargon and six solutions focusing on tailored education, better communication, and building relationships. Conclusions: Self-management is a combined effort achieved only through the engagement of patients, HCPs, and the system. Both studies showed shortcomings in the ‘communication’ domain, possibly due to the complex phenomenon of communication requiring at least two individuals in the process. These findings suggest that HL researchers and health care programs should recommend new strategies for chronic respiratory disease management with a specific emphasis on the concept of ‘communication’.

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