Supporting people with chronic kidney disease to self-manage their condition: understanding the lived experiences, needs and requirements, and barriers and facilitators.

Abstract

Background: Self-management has been identified as an essential component in the effective management of patients with chronic kidney disease (CKD). To effectively develop interventions that support patients with CKD to self-manage, it is crucial to understand their experiences and the factors that may influence their ability to self-manage. This study explored awareness, attitudes and participation with self-management in people living with non-dialysis CKD to understand factors influencing self-management behaviours.

Methods: Semi-structured interviews were conducted with 22 individuals living with non-dialysis CKD. Topics explored included perspectives and experiences of self-management, health and lifestyle behaviours, healthcare professional support, and self-management support, including future interventional approaches. Data were audio recorded and transcribed verbatim. Thematic analysis was used to analyse the data and to identify and report themes.

Results: Six themes were identified encompassing perspectives, barriers and facilitators of self-management: "perceptions and experiences of (self-)managing CKD", "perceived needs and requirements for self-management education and support", "knowledge and capability-related factors", "skills and opportunity-related factors", "confidence and motivational-related factors" and "social support".

Conclusion: Participants perceived that their CKD was not a significant problem, given the lack of concern from their doctor. Despite reporting a lack of awareness and understanding of CKD and its management, participants expressed interest in learning more and implementing appropriate self-management strategies. It was perceived that information and support were provided when it was almost too late, and not when it could potentially have the greatest impact. Perceived barriers and facilitators must be considered when developing interventions to support self-management for people with CKD.