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Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study
Patricia Rico-Mena1,2, Javier Güeita-Rodríguez3, Ricardo Martino-Alba4
1Department of Physiotherapy, Chiropody and Dance, Physical Therapy and Health Sciences Research Group, Universidad Europea de Madrid, C. Tajo, S/N, 28670 Villaviciosa de Odón, Madrid, Spain.
BMC Palliative Care
|June 24, 2023
Summary
Pediatric palliative care is a distinct, life-affirming service for children with complex conditions. An interdisciplinary team approach is crucial for comprehensive care, enhancing communication and coordination for better outcomes.
Area of Science:
- Pediatrics
- Palliative Care
- Healthcare Management
Background:
- Pediatric palliative care (PPC) is essential for children with complex, life-threatening conditions.
- Understanding the delivery of PPC from multiple perspectives is vital for optimizing care.
Purpose of the Study:
- To describe the process of delivering pediatric palliative care.
- To capture the perspectives of both the pediatric interdisciplinary team and the children's parents.
Main Methods:
- Qualitative descriptive case study design.
- Purposeful sampling within a specialized pediatric palliative care unit in Madrid, Spain.
- Data collection through semi-structured interviews, focus groups, and field notes, followed by thematic analysis.
Main Results:
- Two key themes emerged: PPC has a unique identity focused on life and specialized care, often in the home environment.
- The interdisciplinary team is central, fostering a comprehensive view, communication, and coordination.
- Professionals develop specific skills in communication, decision-making, and adaptability.
Conclusions:
- Professional and parental perspectives inform realistic goals for pediatric palliative care.
- Establishing dedicated PPC teams is a necessary organizational change for healthcare systems.
- Recommendations include promoting training, horizontal organizations, enhanced communication, and case coordination.
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