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Development of the pediatric family-based dignity therapy protocol for terminally ill children (ages 7–18) and their families: A mixed-methods study

Published online by Cambridge University Press:  14 March 2024

Junyi Lin
Affiliation:
School of Nursing, Capital Medical University, Beijing, China
Qiaohong Guo*
Affiliation:
School of Nursing, Capital Medical University, Beijing, China
Xuan Zhou
Affiliation:
Beijing Key Laboratory of Pediatric Hematology Oncology, Capital Medical University, National Center for Children’s Health, Beijing, China National Key Discipline of Pediatrics (Capital Medical University), Capital Medical University, National Center for Children’s Health, Beijing, China Key Laboratory of Major Diseases in Children, Ministry of Education, Capital Medical University, National Center for Children’s Health, Beijing, China Hematology Center, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, China
Huijun Li
Affiliation:
Department of Nursing, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, China
Siyu Cai
Affiliation:
Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Children’ s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, China
*
Corresponding author: Qiaohong Guo; Email: qguo@ccmu.edu.cn

Abstract

Objectives

Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families.

Methods

A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts.

Results

The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed.

Significance of results

The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.

Type
Original Article
Copyright
© The Author(s), 2024. Published by Cambridge University Press.

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