Table 2.

Preliminary objectives and determinants aiming to optimize the self-management of CKD patients with LHL, and experiences of ambulatory and dialysis treatments according to the in-depth interviews with patients (n = 19).

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 self-management	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 self-management	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 self-manage 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 competence. However, it was simply too much, and HCPs do not always succeed in giving realistic advice or help to solve problems (n = 7).
Overcome barriers for self- management to maintain behaviors	1. HCPs invite patients to share self-management barriers. 2. HCPs seek for solutions for barriers by applying shared decision making. 3. Patients recognize and solve barriers that negatively influence self-management. 4. Patients know strategies to maintain self-management. 5. Patients share their barriers and concerns with HCPs.	CKD self-management is no explicit aim Patients from GPs (n = 3) said they did not receive specific self-management advice to stabilize CKD. However, patients (n = 6) experienced barriers to self-management on a daily basis, either for diabetes, cardiovasular disease or CKD. Temptations (n = 5), lack of rewards (n = 2), age or mental problems (n = 3) were reasons to give up on self-management. Half of the patients (n = 4) felt that barriers were not discussed often.	Many barriers to maintaining changes All patients (n = 11) shared barriers in the maintenance of self-management. The burden of dialysis (n = 2), age or mental problems (n = 4), and the fact that their kidneys will never get better (n = 5), are all reasons to give up on self-management. Half of the patients (n = 6) felt that barriers were not discussed often.
Strengthen the social network	1. HCPs involve the social network in consultation and treatment. 2. HCPs empower the social network to contribute to self-management. 3. Patients involve their social network in the treatment.	Social network is a bit important Most patients (n = 5) shared that they had the main responsibility in their lifestyle or medication, although others (n = 2) said their social network was mainly responsible. Patients (n = 3) did not always see the need to involve their social network in the treatment.	Social network is really important Half of the patients (n=6) indicated that a significant other was mainly in the lead in lifestyle or medication, although others (n = 2) said they had no support in their self-management. Some said that HCPs do not involve social networks enough (n = 4).

CKD = chronic kidney disease, LHL = limited health literacy, HCP = health care professional, GP = general practitioner, n = number of interviewed patients talking about this experience. Experiences that indicate an important difference between ambulatory and dialysis setting are in bold.