Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease

被引：0

作者：

Nenner, Vanessa ^{[1
,2
,3
]}

Napierala, Hendrik ^{[4
,5
,6
]}

Jonas, Maria Agnes ^{[1
,2
,3
]}

Kubiak, Nina ^{[5
,6
,7
,8
]}

Thumfart, Julia ^{[1
,2
,3
]}

机构：

[1] Charite Univ Med Berlin, Dept Pediat Gastroenterol, Nephrol & Metab Dis, Augustenburger Pl 1, D-13353 Berlin, Germany

[2] Free Univ Berlin, Augustenburger Pl 1, D-13353 Berlin, Germany

[3] Humboldt Univ, Augustenburger Pl 1, D-13353 Berlin, Germany

[4] Charite Univ Med Berlin, Inst Gen Practice & Family Med, Berlin, Germany

[5] Free Univ Berlin, Berlin, Germany

[6] Humboldt Univ, Berlin, Germany

[7] Charite Univ Med Berlin, Immunol & Crit Care Med & Cyst Fibrosis Ctr, Dept Pediat Resp Med, Berlin, Germany

[8] Charite Univ Med Berlin, Clin Internal Med Psychosomat Psychotherapy, Berlin, Germany

来源：

PEDIATRIC NEPHROLOGY | 2025年 / 40卷 / 07期

关键词：

Pediatrics; Advanced care planning; Supportive care; Conservative treatment; End-of-life care; CHILDREN;

D O I：

10.1007/s00467-025-06728-y

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

BackgroundPediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting conditions, such as advanced chronic kidney disease (CKD), from the time of diagnosis. However, PPC is not commonly integrated into routine pediatric nephrology care. This study explores the perspectives and experiences of healthcare providers (HCPs) to better understand the experiences and specific barriers related to PPC integration for children and adolescents with advanced CKD.MethodsWe conducted a qualitative study with 23 HCPs, including nurses, psychologists, social workers, and physicians from seven German pediatric nephrology centers, analyzing semi-structured focus groups and individual interviews using structured content analysis.ResultsFive main categories emerged from the analysis, revealing HCPs' perceptions of CKD as a life-limiting condition, HCPs' moral distress in addressing end-of-life issues, and barriers to PPC integration. Although HCPs reported comprehensive multidisciplinary support for end-of-life situations, a lack of interprofessional communication occasionally hindered coordinated care. HCPs rarely addressed CKD's life-limiting nature proactively. A fear of diminishing hope led HCPs to avoid conversations about prognosis unless in response to a therapeutic crisis. PPC was mostly reserved for end-of-life cases, as HCPs associated PPC with terminal care and expressed concerns over distressing families.ConclusionsThis study highlights the gap between guidelines recommending early integration of PPC and daily nephrology practice, which tends to introduce PPC late in the course of the disease. Training for nephrology teams could improve the quality of life for children with advanced CKD and their families by promoting early integration of primary PPC principles.Graphical abstractA higher resolution version of the Graphical abstract is available as Supplementary information

引用

页码：2341 / 2351

页数：11

共 30 条

[1]

[Anonymous], 2014, Global Atlas of Palliative Care at the End of Life

[2] International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS [J].