[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.

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