Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease.
Background: Pediatric 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 t...
| Publicado en: | Pediatric Nephrology Vol. 40; no. 7; pp. 2341 - 2352 |
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| Autores principales: | , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Springer Nature
Jul2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=185446739&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 185446739 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 0931041X EF1 jtl: Pediatric Nephrology issn: 0931041X maglogo: N pubinfo: dt: Jul2025 vid: 40 iid: 7 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 185446739 183307281 185446739 185446739 10.1007/s00467-025-06728-y 185446739 ppf: 2341 ppct: 11 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease. aug: au: Nenner, Vanessa Napierala, Hendrik Jonas, Maria Agnes Kubiak, Nina Thumfart, Julia affil: https://ror.org/001w7jn25 Department of Pediatric Gastroenterology, Nephrology and Metabolic Diseases, Charité Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin, Augustenburger Platz 1, 13353, Berlin, Germany sug: subj: Renal Insufficiency, Chronic In Infancy and Childhood Renal Insufficiency, Chronic In Adolescence Needs Assessment Nephrology Pediatric Care Palliative Care Multidisciplinary Care Team Health Care Delivery, Integrated Attitude of Health Personnel Evaluation Human Germany Male Female Child Adolescence Adult Middle Age Aged Qualitative Studies Semi-Structured Interview Focus Groups Content Analysis Terminal Care Morals Psychological Distress Interprofessional Relations Communication Advance Care Planning Conservative Treatment Child: 6-12 years Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Male Female ab: Background: Pediatric 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. Methods: We 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. Results: Five 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. Conclusions: This 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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