Patients' and healthcare professionals' beliefs, perceptions and needs towards chronic kidney disease self-management in China: A qualitative study

Objectives To support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management. Design A basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations. Setting One major tertiary referral hospital in Henan province, China. Participants 11 adults with a diagnosis of CKD with CKD stages G1-G5 and 10 HCPs who worked in the Department of Nephrology. Results Four themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient-HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources. Conclusions The limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient-HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.