The fragile spirituality of parents whose children died in the pediatric intensive care unit

J Health Care Chaplain. 2020 Jul-Sep;26(3):117-130. doi: 10.1080/08854726.2019.1670538. Epub 2019 Oct 4.

Abstract

Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died in the pediatric intensive care unit revealed features of a spirituality that is fragmentary and full of contradictions. This type of spirituality, which we refer to as fragile, speaks of parents' connectedness with the deceased child and the hope of some kind of reuniting after one's own death. Acknowledging that fragments of spirituality can be part of parents' experiences in their child's end-of-life stage can be a meaningful contribution to compassionate care.

Keywords: End-of-life care; pediatric intensive care; spirituality.

MeSH terms

  • Adolescent
  • Child
  • Child, Preschool
  • Critical Illness / mortality*
  • Female
  • Humans
  • Infant
  • Infant, Newborn
  • Intensive Care Units, Pediatric
  • Male
  • Palliative Care
  • Parent-Child Relations*
  • Parents / psychology*
  • Qualitative Research
  • Spirituality*
  • Terminal Care