Closing the loop in person-centered care: patient experiences of a chronic kidney disease self-management intervention

PURPOSE: The provision of self-management support (SMS) for people with earlier stages (1–4) of chronic kidney disease (CKD) can improve patient outcomes and extend time to dialysis. However, attempts to deliver such support have often not taken patient preferences into account. After the development, implementation, and quantitative evaluation of the person-centered CKD-SMS intervention, the aim of this study was to investigate participant experiences and perceptions of the program, as well as to seek suggestions to improve future SMS attempts. PATIENTS AND METHODS: Semi-structured, face-to-face interviews were conducted with almost all (63/66) participants in the CKD-SMS. Deductive categories were derived from previous research into self-management from the CKD patient’s perspective, and this was supplemented by categories that emerged inductively during multiple readings of interview transcripts. Content analysis was used to analyze interview data. RESULTS: Participants recognized self-management of CKD as complex and multifaceted. They felt that the CKD-SMS helped them develop skills to engage in necessary self-management tasks, as well as their knowledge about their condition and confidence to take an active role in their healthcare. These participants experience a healthcare environment that is characterized by complexity and inconsistency, and participation in the intervention helped them to navigate it. The benefit of participating in this research to contribute to the scientific literature was also recognized by participants. Overall, participants found the CKD-SMS useful in its current format, and made some suggestions for future interventions. CONCLUSION: People with CKD must engage in self-management behavior within a complex health environment. Individualized SMS such as the CKD-SMS provides an opportunity to support patients to manage their health effectively.