76 EXPERIENCES WITH AND BARRIERS FOR SELFMANAGEMENT Table 3.2 provides the main- and subthemes with illustrative quotes. Although participants also shared positive experiences, we focused mainly on barriers. Interviews with patients yielded four themes: 1) CKD elusiveness, 2) suboptimal intake of knowledge 3) not taking a front-seat role and 4) maintaining change. From the interviews with HCPs, three themes emerged: 1) not recognizing HL problems, 2) lacking effective strategies and 3) health care barriers. PERSPECTIVES OF PATIENTS Theme 1: CKD elusiveness Many patients mentioned how CKD was or had been elusive, so they were not fully aware of the need for self-management. In earlier disease stages, CKD was often not identified by the GPs, or they solely shared how lab values indicated some kidney deterioration without discussing the exact meaning of kidney disease. Patients receiving care from nephrology specialists still did not always experience symptoms nor felt ill. Many patients did not see the need to selfmanage until they experienced a sudden drop in kidney function or were warned by a HCP. Theme 2: Suboptimal uptake of knowledge Most patients reported suboptimal knowledge uptake from both written information and consultations, leading to struggles with their self-management. Some patients said information was limited; especially GPs did not extensively discuss CKD self-management or provide additional written information. Regarding later CKD stages, patients considered oral and written information from the nephrology specialists overwhelming. Patients did not always use written information, because of lacking reading skills or considering it to be too confronting. Patients also described situations of overestimation by the HCPs in all settings. For example, HCPs discussed too many topics or assumed patients had basic knowledge about kidneys. In these situations, patients struggled to ask for clarification or express their needs.
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