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Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic
Vanessa Nenner1, Hendrik Napierala2, Maria Agnes Jonas1
1Department 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.
Insights
Pediatric palliative care (PPC) is underutilized in pediatric nephrology for children with advanced chronic kidney disease (CKD). Healthcare providers face barriers, including fear of diminishing hope, delaying essential care discussions and integration.
Area of Science:
- Pediatric Nephrology
- Palliative Care
- Healthcare Provider Experiences
Background:
- Pediatric palliative care (PPC) aims to enhance quality of life for children with life-limiting conditions like advanced chronic kidney disease (CKD).
- PPC integration into routine pediatric nephrology care is currently uncommon.
- This study investigates healthcare provider (HCP) perspectives on barriers to PPC integration for pediatric CKD patients.
Purpose of the Study:
- To explore HCP experiences and identify barriers to integrating PPC for children and adolescents with advanced CKD.
- To understand the gap between recommended early PPC integration and current clinical practice in pediatric nephrology.
Main Methods:
- Qualitative study involving 23 HCPs (nurses, psychologists, social workers, physicians) across seven German pediatric nephrology centers.
- Data collected through semi-structured focus groups and individual interviews.
- Analysis employed structured content analysis to identify key themes.
Main Results:
- HCPs perceive CKD as life-limiting and experience moral distress regarding end-of-life discussions.
- Barriers to PPC integration include a lack of proactive communication about prognosis and a tendency to reserve PPC for terminal stages.
- Fear of reducing patient hope often prevents early, open conversations about the life-limiting nature of CKD.
Conclusions:
- A significant gap exists between guidelines advocating early PPC integration and current pediatric nephrology practice, where PPC is often introduced late.
- HCPs associate PPC primarily with end-of-life care, expressing concerns about distressing families.
- Training for pediatric nephrology teams is recommended to facilitate early PPC integration and improve quality of life for children with advanced CKD and their families.
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.
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