A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals

Abstract Objectives Limited Health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management. Methods We performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n=24) and HCPs (n=37) from general practices and hospitals. Results Four themes arose among patients: 1) CKD elusiveness, 2) suboptimal intake of knowledge 3) not taking a front-seat role, and 4) maintaining change. Among HCPs, three themes emerged: 1) not recognizing HL problems, 2) lacking effective strategies, and 3) health care barriers. Conclusion We suggest three routes to optimize self-management: providing earlier information, applying person-centred strategies to maintain changes, and improving competencies of HCPs. Practice implications HCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioural approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.