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[The dynamic of the supply of pediatric palliative care: a multiple case study]
Sara Fiterman Lima1, Zeni Carvalho Lamy1, Vanise Barros Rodrigues da Motta1
1Universidade Federal do Maranhão, São Luís, Brasil.
Insights
Misunderstanding pediatric palliative care delays crucial support for children. Improved training and communication are vital for effective, comprehensive care delivery by health professionals and families.
Area of Science:
- Pediatric Palliative Care
- Qualitative Health Research
- Healthcare Delivery Systems
Background:
- Palliative care for children is essential but faces challenges in implementation.
- Understanding the perspectives of healthcare professionals and families is crucial for improving care.
- Existing care models may exhibit fragmentation and communication gaps.
Purpose of the Study:
- To analyze the dynamics of pediatric palliative care supply from the viewpoints of healthcare professionals and families.
- To identify barriers and facilitators in the provision of palliative care for hospitalized children.
- To explore the understanding and delivery of palliative care in a high-complexity teaching hospital.
Main Methods:
- Qualitative exploratory multiple case study design.
- Data collected from 18 family members and 30 health professionals.
- Thematic analysis of interviews with nine children (aged 1-8) eligible for palliative care.
Main Results:
- A significant misunderstanding of pediatric palliative care concepts was identified, delaying care initiation.
- Healthcare professionals and families experienced insecurity, fear, resistance, and guilt.
- Communication processes and interprofessional relations showed weaknesses, leading to fragmented care despite comprehensiveness.
Conclusions:
- Gaps in knowledge and training for health professionals necessitate targeted educational investments.
- Shared decision-making and increased receptiveness to family needs are essential for integrated palliative care.
- Addressing cultural and religious values surrounding life and death is a complex but necessary component of palliative care education.
Abstract:
The objective was to analyze the dynamic involving the supply of palliative care for eligible children from the perspective of health professionals and families. A qualitative exploratory multiple case study was performed. This was a cross-section of data from a thesis that evaluated care for hospitalized children who were eligible for palliative care. The data were collected in a teaching hospital serving as the reference for high-complexity care in São Luís, Maranhão State, Brazil, from October 2016 to July 2017, interpreted with thematic analysis. The participants were 18 family members and 30 health professionals. Cases were nine children from one to eight years of age, five of whom were eligible for exclusive care and four for integrated care. Three categories emerged from the interviews: (1) a mistaken understanding of the concept of palliative care; (2) delivering the news; and (3) comprehensiveness and fragmentation in the context of palliative care. The mistaken understanding of pediatric palliative care interfered in the approach to the child and family and delayed the start of care. Feelings of insecurity, fear, resistance, and guilt were present among those involved in this care. The communication process and relations displayed weaknesses. The care involved both comprehensiveness and fragmentation. The care shows weaknesses and lack of knowledge and requires investments in training and preparing the health professionals, shared decisions, and receptiveness to the families. Palliative care mobilizes life-and-death cultural and religious values, and education in this direction proves to be a path full of challenges.
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