132 Objective Determinants Experiences from ambulatory setting Experiences from dialysis setting Improve CKD awareness 1. HCPs create CKD awareness in LHL patients. 2. Patients are aware of having kidney problems. Half of the patients are fully unaware Patients from GPs (n = 4) knew they had proteins in their urine, but were unaware of having CKD. Others had some awareness, but did not consider CKD dangerous. Patients are fully aware All patients (n = 11) were fully aware of having CKD and its risks. Two patients stated they became aware when CKD was already severe. Improve knowledge on CKD and selfmanagement 1. HCPs inform patients in simple language/ with visual strategies. 2. HCPs check the patients’ understanding. 3. Patients understand (the symptoms and risks of) CKD. 4. Patients ask questions/clarification from the HCP. Patients lack knowledge More than half of the patients (n = 4) lacked knowledge on CKD and CKD self-management. Patients shared problems with reading and understanding information (n = 3) and with asking HCPs questions (n = 5). The last was related to limited time and space to share personal issues during short consultations. Patients struggle with the details Patients (n = 10) knew what CKD is and understood how self-management can stabilize CKD (n = 8). However, details on lifestyle and medication were, for many, difficult to understand (n = 7). Patients shared problems with reading and understanding information (n = 7) and with asking HCPs questions (n = 4). Frequent dialysis made asking questions easier. Improve motivation and preparation of selfmanagement 1. HCPs apply shared decision making to decide on aims of self-management. 2. Patients are intrinsically motivated to self-manage their disease and treatment. 3. Patients share their personal needs regarding self-management with HCPs. Not seeing the urgency to self-manage Half of the patients (n = 4) stated lifestyle and medication are important to improve health. Many were not very motivated to make self-management changes for CKD (n = 6), because they lacked symptoms or did not know how or why. If patients improved their lifestyle, they often did so because of co-morbidities (n = 5). Patients (n = 5) felt HCPs were in the lead during consultations. Seeing importance, but complicated All patients (n = 11) stated lifestyle and medication are important and knew what they needed to do in their CKD self-management. Negative emotions (n = 6), and favoring quality of life over strict adherence (n = 6) were reasons not to change lifestyle sometimes. Half of the patients (n = 5) felt the HCPs were mainly in the lead in what they needed to do. Teach competences to selfmanage at home 1. HCPs translate general self-management advice into action points. 2. HCPs respond to the patients’ problems. 3. Patients have the practical competence to improve lifestyle and medication. CKD self-management is no explicit aim Few patients (n = 3) started to adopt lifestyle changes to stabilize CKD. Most (n = 6) gained competence helping them to live healthier in general, as a result of diabetes or hypertension. These patients said advice on lifestyle or medication were not always feasible (n = 4). Unable to realize all needed changes All patients claimed to follow up at least some of the lifestyle and medication advice. Half (n = 6) said they gained the needed competences. However, it was simply too much, and HCPs do not always succeed in giving realistic advice or help to solve problems (n = 7). Table 4.2 Preliminary objectives and determinants aiming to optimize self-management of CKD patients with LHL, and the experiences from ambulatory and dialysis setting according to the in-depth interviews with patients (n=19).
RkJQdWJsaXNoZXIy MTk4NDMw