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

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.

Parental bereavement – impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review

“…Falkenburg, van Dijk [91] found that many parents had their faith profoundly shaken [91][92][93][94]. Frei-Landau, Hasson-Ohayon [59] suggest that there are three manifestations of existential or divine struggles.…”

O tempo do luto materno pelo filho que morreu na infância

“…Neste contexto, a espiritualidade é significativa na perspectiva que, de algum modo, oferece amparo diante da realidade existencialmente perturbadora da perda. Assim, a dimensão espiritual faz parte do cuidado ao luto materno, e os profissionais de saúde devem estar cientes de sua relevância e considerar a oferta de cuidado compassivo adequado 29 .…”

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

“…44,46,62,63,69,74,82,83,86,93 The studies also included a variety of religions. 38,40,41,45,49,58,[61][62][63]71,73,74,78,83,94,96,99 In addition some parents with no previous religious belief reported still finding solace in religion and prayer in times of difficulty. 46 Religion could also help reconcile parents to their inability to protect their child from the serious prognosis.…”

“…61,95 After the death of their child, ordinary events could have a transcendent meaning for parents, signifying the ongoing feeling of connection with their child. 61 For example, through seeing a symbolic representation in birds or butterflies, or music from toys that spontaneously started playing without prompting it. 61 Support from family, friends, their faith community, and other parents with similar experiences, also brought parents comfort and strength.…”

“…61 For example, through seeing a symbolic representation in birds or butterflies, or music from toys that spontaneously started playing without prompting it. 61 Support from family, friends, their faith community, and other parents with similar experiences, also brought parents comfort and strength. 41,44,48,58,61,72,76,80,83,86,94 Parents spoke of stronger relationships, and a greater appreciation of people in their network, to the detriment of material values.…”