Publication
Pediatric advanced chronic kidney disease as a family challenge: coping and communication in daily life
Jonas M, Napierala H, Kanzelmeyer N, Taylan C, Kubiak N, Thumfart J · European Journal of Pediatrics · 2026
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.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.