"The good death": Experience of parents who have suffered the loss of a child in a pediatric intensive care unit. A phenomenological study

Abstract

Aims: To explore the experience of families who have suffered the loss of a child in an Intensive Care Unit. This article specifically describes the experience of the "Good Death", a concept that has emerged from the discourse of the informants.

Research methodology: A qualitative study with a phenomenological perspective was conducted in the Intensive Care Unit of a high-complexity hospital. A total of 13 in-depth interviews were conducted, with 11 mothers and 9 fathers, with an average duration of 60 min until theoretical saturation was reached. A thematic textual analysis was conducted following Van Manen's hermeneutic approach. Regarding the theme of the "Good Death", Walker and Avant Concept Analysis was also used as a reference.

Findings: Families defined "The Good Death" as one in which no physical, emotional, or spiritual suffering was experienced; the privacy and dignity of the child and family were preserved; the family was actively involved in decision-making and end-of-life care; emotional and spiritual accompaniment was provided; and the opportunity to generate memories and legacies was available. Consequences of experiencing a "Good Death" were awareness of the loss, emotional adaptive management, and allocation of the meaning/sense of loss.

Conclusions: The experience of the death of a child in a Pediatric Intensive Care Unit must ensure a peaceful, dignified, and respectful death, accompanied and participated in by the family to achieve a "Good Death".

Implications for clinical practice: Evidence-based palliative and end-of-life care is essential for developing protocols and resources that ensure excellent support for families and their adaptation to the loss.

Keywords: End of life care; Family-centered nursing; Hospice care; Infant death; Intensive care units.