Rights of the Dying Child: The Nurses' Perception

J Palliat Med. 2018 Sep 25. doi: 10.1089/jpm.2017.0660. Online ahead of print.

Abstract

Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the implementation of those principles in hospital.

Materials and methods: A multicenter, cross-sectional study to observe the nurses' positions about the 10 rights outlined in the Charter, using an online questionnaire in 5 pediatric hospitals in northern Italy.

Results: A total of 119 nurses (44.9%) completed the questionnaire. The majority (range: 86.6-100%) expressed their agreement with the Charter's principles (Likert ≥4). Lower ratings were reported in Charter's principles implementation items (range: 42.9-89.1%). Being older and working in a smaller hospital lead the nurses to overlook the child's right to be informed and to be given the opportunity to make decisions about his/her own life and death (p = 0.02, p < 0.01). Postgraduate training induced greater awareness of the dying child (p = 0.01).

Conclusions: This study highlights the value of the Charter of the Rights of the Dying Child as a reference guideline for nurses working in pediatric hospitals. Better training is important to improve the nurse's communication skills and the pediatric palliative care should be offered to all families that have a child with incurable disease mostly in the end of life.

Keywords: dying; human rights; pediatric palliative care.