Suffering in children: opinions from parents and health-care professionals

Willemien de Weerd*, Donald van Tol, Marcel Albers, Pieter Sauer, Marian Verkerk

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

18 Citations (Scopus)

Abstract

Alleviation of suffering is considered to be one of the important goals of medical interventions. Understanding of what constitutes suffering in children admitted to a pediatric intensive care unit (PICU) is lacking. This study aims to assess perceptions by parents, doctors, and nurses of suffering in critically ill children. We interviewed 124 participants (parents, physicians, and PICU nurses) caring for 29 admitted children in a 20-bed level-III PICU and performed a qualitative analysis. We found that most participants made a distinction between physical and existential suffering. Parents considered the child's suffering caused by or associated with visible signs as discomfort. Nurses linked suffering to the child's state of comfort. Physicians linked them to the intensity and impact of treatment and future perspectives of the child. Various aspects of the child's suffering and admission to a PICU caused suffering in parents. Conclusion: Parents', physicians', and nurses' perceptions of suffering overlap but also show important differences. Differences found seem to be rooted in the relation to and kind of responsibility (parental/professional) for the child. The child's illness, suffering, and hospital admission cause suffering in parents. Health-care professionals in PICUs need to be aware of these phenomena.

Original languageEnglish
Pages (from-to)589-595
Number of pages7
JournalEuropean Journal of Pediatrics
Volume174
Issue number5
DOIs
Publication statusPublished - May-2015

Keywords

  • Suffering
  • Pediatric intensive care
  • Decision-making
  • Suffering of parents
  • Physical suffering
  • Existential suffering
  • END-OF-LIFE
  • CANCER
  • SYMPTOMS
  • PERSPECTIVES
  • DECISIONS

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