• Marije A Brouwer, Marijanne Engel, TeunissenSaskia C C MSCCMJulius Center for Health Sciences and Primary Care, (M.A.B, M.E, S.C.C.M.T, M.C.K), Center of Expertise in Palliative Care Utrecht, Department of General Practice and Nursing Science, University Medical Center Utrecht, Utrecht, Th, Carlo Leget, and Marijke C Kars.
• Julius Center for Health Sciences and Primary Care, (M.A.B, M.E, S.C.C.M.T, M.C.K), Center of Expertise in Palliative Care Utrecht, Department of General Practice and Nursing Science, University Medical Center Utrecht, Utrecht, The Netherlands.
• J Pain Symptom Manage. 2024 Oct 1; 68 (4): 360368.e3360-368.e3.

BackgroundParents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective.MethodsWe held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed.ResultsTwenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs.ConclusionThe spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.

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