Trying to understand the illness: A qualitative investigation of health literacy of patients undergoing maintenance hemodialysis

Limited health literacy is high among patients with chronic kidney disease, which can pose challenges in health care. Evidence of health literacy in Indonesia, particularly regarding patients undergoing hemodialysis, is lacking. In this study, we aimed to explore health literacy in adult patients undergoing maintenance hemodialysis. An inductive qualitative study was conducted. Individual semi‐structured interviews were conducted with 10 adult patients undergoing hemodialysis, four family caregivers, and four healthcare professionals. Interviews were transcribed verbatim and analyzed thematically. Three themes emerged from the data: “Trying to understand the illness,” “searching and obtaining health information,” and “applying health information.” Understanding and accepting the illness included raising awareness of the changes in their lives and accepting these changes. Participants actively sought information from healthcare professionals and other sources and used it carefully. Behavioral changes included patients' adherence to therapy, although participants often felt bored during the illness trajectory. Understanding the illness and being willing to seek and critically evaluate health information before implementing it are important. These aspects may affect patient outcomes and require further intervention and research.