HEALTH LITERACY AND DISEASE SELF-MANAGEMENT: AN EXPLORATORY STUDY OF CHRONIC KIDNEY DISEASE PATIENTS' PERSPECTIVES

Abstract

Introduction: Health literacy (HL) involving the ability to obtain, process and understand the health information, besides seeking appropriate care and making informed health decision is becoming a fundamental element in disease self-management of patients with chronic diseases. There is growing number of evidence on HL and disease self-management, but limited research focused on the self-management within the context of HL of chronic kidney disease (CKD) patients. Objective: The study explores the self-management of CKD patients with different HL need. Methodology: One to one interviews were conducted in eligible purposively selected CKD patients attending a Nephrology clinic at a tertiary hospital in Penang, Malaysia. Interviews were guided by a set of open-ended questions developed based on literature review and field experts' inputs. The participants' HL level was determined with the original Expanded Brief Patient Health Literacy Screen (EBPHLS) or translated Malay version. Interviews were transcribed and analyzed using thematic analysis. Results & Discussions: The study findings revealed poor self-management practices among CKD patients irrespective of their HL levels. The majority of participants claimed a good understanding of the instruction and information provided by their healthcare providers although some still raised concern about the use of medical terms and unclear language. Some barriers to seek for further information were identified and were more apparent in limited HL patients. Most of the participants reported non-adherences to prescribed medication with differences noted on the reasons cited by aqeduate and limited HL patients. Generally, the study participants failed to have proper meal plans and routine physical activities, in addition to the lack of self-monitoring of their blood pressure and blood sugar level. Conclusion: Understanding self-management from the perspective of CKD patients and recognizing the differences in regards to their HL is crucial in designing individualized and targeted self-management CKD education programs.