Growing through experience: A phenomenological study of pediatric healthcare providers' experience of caring for terminally ill children in mainland China

Abstract

Purpose

Caring for terminally ill children is highly demanding and emotionally challenging for healthcare providers. Understanding their experiences is crucial for identifying their needs, thereby providing appropriate support. However, limited research has explored their experiences in caring for dying children in mainland China, where the death taboo culture runs deep. This study aims to elucidate pediatric healthcare providers' experience of caring for terminally ill children in mainland China.

Methods

This is a descriptive phenomenology. Semi-structured interviews were utilized to explore the views of a purposive sample of 19 healthcare providers recruited from five general hospitals and a pediatric palliative care institution in northern China. Data were analyzed using Colaizzi's seven-step analysis method.

Results

Five themes were identified: (1) Cultural and ethical tensions in pediatric end-of-life care; (2) Care reflecting cultural humility; (3) Holistic care practices for terminally ill children and their families; (4) Emotional and affective responses; (5) Multifaceted growth and transformation.

Conclusions

Caring for terminally ill children challenges pediatric healthcare providers emotionally and culturally, while also fostering personal and professional growth by offering deeper insights into life and death as well as the meaning of work.

Implications for practice

Pediatric healthcare providers should receive training with a focus on managing emotional distress, enhancing communication skills on death and dying topics, and fostering cultural humility.