Parent Experiences of Child Loss and End-of-Life Care in a Pediatric Intensive Care Unit: Protocol for a Qualitative Study

Abstract

Background: Death of a child in the pediatric intensive care unit is a rare event that can occur after failed cardiopulmonary resuscitation efforts, after a brain death diagnosis, or after a decision to limit therapeutic efforts. Nevertheless, even in the case of children with terminal and progressive illnesses, death is a crisis that comes as a surprise to parents and is perceived as unexpected. In the final stage of a child's life, health care staff play a key role in sharing feelings and experiences with the family and in supporting them throughout the process in order to facilitate the grieving process.

Objective: The aim of this study is to explore the experiences of parents whose children have died in a pediatric intensive care unit.

Methods: To address the study aims, a qualitative phenomenological study based on the van Manen proposal will be carried out. The study will be conducted in the pediatric intensive care unit of a tertiary care hospital. The study population will be parents or guardians (older than 18 years) of children who have died in the unit at least 6 months prior to potential participation in the study. Purposive sampling will be used to ensure sample diversity in relation to experiential variables. Families will be initially contacted by letter sent alongside the standard letter of condolences from the hospital, and then recruited in a subsequent telephone call. The sample size will be determined by data saturation. In-depth interviews will be conducted individually or in pairs. Parents will decide when, how, and where to conduct the interviews, which will be transcribed verbatim and examined using thematic discourse analysis.

Results: This study was awarded a grant in December 2020 and was approved by the Medical and Health Research Ethics Committee on December 21, 2020. Data collection started in April 2021, and the results are expected to be published in 2023.

Conclusions: This project is intended to maintain, strengthen, and build on a particular line of research on end-of-life care with a focus on effective coping, spiritual well-being, and the adaptive grieving process. The results will contribute to establishing action guidelines that are both based on the discourses of parents who have experienced the death of a child and geared toward high-quality end-of-life care through dignified death and adaptive grief management.

International registered report identifier (irrid): DERR1-10.2196/43756.

Keywords: death; family nursing; hospice and palliative care nursing; intensive care units; patient-centered care; pediatric; qualitative research.