Experiencia de padres de niños que han fallecido en una unidad de cuidados intensivos pediátricos sobre la conexión humana y los cuidados compasivos

Abstract

Introduction

The death of a child in an Pediatric Intensive Care Unit (PICU) is a rare event, the main causes being failed resuscitation efforts, brain death or limitation of the therapeutic effort. The family interpretation of this experience has a significant impact on mourning. Knowledge of the elements that condition this interpretation, is fundamental to be able to accompany and care.

Aims

General: to explore the experience of families who have suffered the loss of a child in the PICU. Specific: to describe the experience of «human connection and family centred compassionate care».

Methodology

A qualitative phenomenological study was carried out in the PICU of a high complexity hospital. Thirteen interviews were conducted (11 mothers/9 fathers), with an average duration of 60 minutes until thematic saturation. Data were analysed following Van Manen's hermeneutic approach.

Results

Compassionate family-centred care is based on the human connection between care team and family system with the objectives of: recognising care as a family affair, promoting a collaborative approach to care and strengthening family bonds. Their achievement requires: informing/training parents about the disease process and care, involving them in decision-making, facilitating their participation in care, generating spaces for honest communication with the care team, facilitating care respire and sibling visits, making, promoting «family magic spaces», and generating family memories.

Conclusions

The experience of losing a child in the PICU is conditioned by the care team's approach to the management of the families’ suffering. The co-creation of a relationship space centred on their needs and mediated by sincere communication and real collaboration is valued as a valuable gift.