Pediatric advanced chronic kidney disease as a family challenge: coping and communication in daily life.

UNLABELLED: Pediatric advanced chronic kidney disease (CKD) profoundly affects not only the patient but the entire family system. This study explores how affected families-including patients, siblings, and primary caregivers-perceive and experience advance CKD as a chronic, life-limiting illness with life-prolonging but non-curative treatment options. A qualitative study was conducted involving seven families recruited from three pediatric nephrology centers. Semi-structured interviews were conducted with patients with CKD ≥ 4, at least one sibling and one parent per family. Both, patients and siblings, were aged ≥ 14 years. Data were analyzed using qualitative content analysis. Five major themes were identified: families' understanding of CKD as a chronic life-limiting disease, coping with CKD and its uncertain course, the perspectives of healthy siblings, family dynamics, and communication. Even in stable medical conditions like a functioning kidney transplant, participants acknowledged CKD as a lifelong condition without definitive cure options. Siblings frequently adapted flexibly to family needs, occasionally adapting their role to fill structural gaps. Family members involved in caregiving-whether parents or siblings-frequently expressed feeling insufficiently informed. In contrast, patients and siblings not engaged in caregiving generally felt well informed.

CONCLUSION: By capturing family-wide perspectives, this study contributes new evidence on intra-family dynamics and supports the need for family-centered care that integrates structured communication, sibling involvement in clinical practice, and screening for family-level risk factors.

WHAT IS KNOWN: • Pediatric advanced CKD impacts family functioning. • Siblings are at risk for psychological distress but are often overlooked in care.

WHAT IS NEW: • Additional stressors beyond CKD can increase caregiving burden and compromise family coping. • Information needs are tied to the level of responsibility and involvement in disease management. • Siblings often adopt flexible roles to stabilize the family system.