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 explored the perceptions and experiences of patients, informal caregivers, nephrologists, and health care 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 semirural areas in northern France.

ANALYTICAL APPROACH: Semistructured interviews explored experiential themes and the perceived value of CKM in 4 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, and 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

CKM 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.

PLAIN-LANGUAGE SUMMARY: Some people with advanced kidney disease are too frail or simply do not wish to receive dialysis. For them, an alternative exists: conservative kidney management, which focuses on comfort, quality of life, and avoiding hospitalization. In France, a coordinated team of nurses, doctors, and allied health professionals delivers this care in the home. This study explored how patients, their family caregivers, and the health care professionals experience this care. Using in-depth interviews, we found that effective care relies on the services of a specialized coordinating nurse, that family caregivers carry heavy and often invisible responsibilities, and that honest conversations about the end of life are challenging. These insights can inform better home-based care for older adults facing kidney failure worldwide.