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

## TL;DR

This study shows how advanced kidney disease in children affects the whole family, highlighting communication challenges and the need for family-centered care.

## Contribution

The study reveals new insights into how siblings adapt and how information needs vary based on caregiving roles in families dealing with pediatric CKD.

## Key findings

- Siblings often take on flexible roles to support family stability.
- Caregivers frequently feel insufficiently informed about CKD.
- Stressors beyond the disease itself can worsen family coping.

## Abstract

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.

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.

The online version contains supplementary material available at 10.1007/s00431-026-06861-2.