Abstract

BackgroundInadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes. However, little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Our objectives were to describe how patients with a long-term condition practice health literacy in the management of their health and communication with health professionals, how they become more health literate over time and their experience of using health services. We also sought to identify and describe the motivations, facilitators and barriers in the practice of health literacy in healthcare consultations.MethodsWe designed a longitudinal qualitative study using serial interviews with 18 participants to explore their experiences of learning to manage their condition and their experiences of health literacy when participating in healthcare processes. Participants were recruited from patient education programmes and were interviewed three times over a period of 9 months. A framework approach was used to analyse data.ResultsA model is presented that illustrates the development of health literacy along a trajectory that includes the development of knowledge, health literacy skills and practices, health literacy actions, abilities in seeking options and informed and shared decision making opportunities. Motivations and barriers to developing and practising health literacy skills partly reflected participants' characteristics but were also influenced by health professionals. Some participants developed their health literacy to a point where they became more involved in healthcare processes (including informed and shared decision-making).ConclusionsPatients with a long-term condition can develop health literacy skills over time and put their skills into practice in becoming more active in healthcare consultations. Our findings have implications for developing health literacy interventions aimed at patient involvement in healthcare processes and improved self-management of long-term conditions.

Highlights

  • Inadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes

  • The most commonly used measures used to investigate the relationship between health literacy and health outcomes are the Test of Functional Health Literacy in Adults [TOFHLA] [9], which focuses on reading comprehension, and the Rapid Estimate of Adult Learning in Medicine [REALM] [10], which focuses on reading ability

  • We present the Health Literacy Pathway Model to describe how health literacy develops along a trajectory that enables individuals, supported by others, to seek, engage with and act on health information to manage their health and become more actively involved in healthcare consultations, in the context of various long term conditions

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Summary

Introduction

Inadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes. Little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Our objectives were to describe how patients with a long-term condition practice health literacy in the management of their health and communication with health professionals, how they become more health literate over time and their experience of using health services. Descriptions and measurements Little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Zarcadoolas et al [6] consider the outcomes of health literacy which are to “make informed choices, reduce health risks and improve quality of life“. The most commonly used measures used to investigate the relationship between health literacy and health outcomes are the Test of Functional Health Literacy in Adults [TOFHLA] [9], which focuses on reading comprehension, and the Rapid Estimate of Adult Learning in Medicine [REALM] [10], which focuses on reading ability

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