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J Health Care Chaplain. 2019 Oct 4:1-14. doi: 10.1080/08854726.2019.1670538. [Epub ahead of print]

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

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Intensive Care Unit and Department of Pediatric Surgery (JLF, DT, MvD), Erasmus University Medical Center - Sophia Children's Hospital , Rotterdam , the Netherlands.
Department of Internal Medicine, Erasmus University Medical Center , Rotterdam , the Netherlands.
Faculty of Religion and Theology (RRG), Vrije Universiteit Amsterdam , Amsterdam , the Netherlands.


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.


End-of-life care; pediatric intensive care; spirituality

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