Lived Experiences of Home-Based Conservative Kidney Management in Older Adults: A Qualitative Study

Rationale & Objective Despite growing interest in conservative kidney management (CKM) for older adults with advanced chronic kidney disease (CKD), little is known about the lived experiences of those involved in CKM care. This study aimed to explore the perceptions and experiences of patients, informal caregivers, nephrologists, and healthcare professionals participating in a coordinated home-based CKM pathway in France. Study Design Multicenter qualitative study using grounded theory. Setting & Participants Participants were recruited from a regional, coordinated home-based CKM pathway involving 20 nephrology centers and a multidisciplinary care network across urban and semi-rural areas in northern France. Analytical Approach Semi-structured interviews explored experiential themes and the perceived value of CKM in four stakeholder groups. Analysis used grounded theory with open, axial, and selective coding. Results Fifty-three participants were interviewed: 12 patients, 12 informal caregivers, 15 nephrologists, and 14 home-care professionals. Three interrelated themes emerged. First, CKM was perceived as a meaningful and legitimate alternative to dialysis, centered on remaining at home, preserving autonomy, and prioritizing quality of life. The decision not to dialyze was usually described as patient-driven and grounded in a rejection of dependence and hospitalization. Second, communication, decision-making, and coordination emerged as central but uneven pillars of the pathway. Introducing conservative care and discussing end-of-life preferences remained difficult, whereas the coordinating nurse consistently appeared as the key structural link between patients, caregivers, nephrologists, and community professionals. Third, informal caregivers occupied a central yet vulnerable position, combining emotional support, practical coordination, and symptom monitoring; although increasingly involved in organizing care, they frequently experienced substantial burden, anticipatory distress, and mutual protective silences within families. Limitations Single-region study; limited generalizability; possible selection bias. Conclusions Conservative kidney management involves complex relational, emotional, and practical dynamics. Incorporating the perspectives of various stakeholders may help optimize coordinated, home-based care pathways tailored to older adults with advanced CKD.