Abstract
ObjectivesLimited 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. MethodsWe 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. ResultsFour 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. ConclusionWe suggest three routes to optimize self-management: providing earlier information, applying person-centered strategies to maintain changes, and improving competencies of HCPs. Practice implicationsHCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioral approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.
Highlights
In 2017, 697.5 million people were diagnosed with Chronic Kidney Disease (CKD) of whom 1.2 million died [1]
We show both general practitioner (GP) and nephrology specialists fail to provide patients with a complete overview on CKD, and its relation with comorbidities and self-management
Specialists need to look beyond their specialism to truly support patients with limited health literacy (LHL) and multiple diseases
Summary
In 2017, 697.5 million people were diagnosed with Chronic Kidney Disease (CKD) of whom 1.2 million died [1]. Self-management refers to the in dividual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition [10], and is difficult for patients with LHL. These difficulties are illustrated by an association of LHL with worse treatment knowledge [11,12], lifestyle [4,13,14,15,16] and medication management [9,12]. The self-management experiences and barriers of CKD patients with LHL remain largely unknown
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