Barriers to and Facilitators of Pediatric Palliative Care in Mainland China, Hong Kong, and Taiwan: A Document Analysis

Abstract

Background: Although progress has been made, substantial barriers exist in the development and implementation of pediatric palliative care (PPC) in mainland China, Hong Kong, and Taiwan. Possible explanations include the idea that cultural taboos erect barriers that short-circuit PPC discussions among stakeholders, and secondly, regional guidelines intended to support PPC fail to do so effectively. Here, we aimed to identify and document the scope of barriers to and facilitators of PPC practices in these regions and to explore to what extent and how regional PPC guidelines address these barriers/facilitators.

Methods: We identified and compared two kinds of documents: (1) recent journal articles reporting on empirical studies of barriers to/facilitators of PPC practices in mainland China, Hong Kong, or Taiwan and (2) published PPC regional guidelines from the three regions. International and regional databases were searched to identify articles, along with PPC professional organizations in the three regions to identify PPC guidelines. Inductive content analysis was used for data analysis, synthesis, and document comparison.

Results: Seventeen relevant articles on PPC barriers/facilitators and 16 documents with PPC guidelines were identified. Barriers/facilitators were reported on three organizational levels: micro, meso, and macro levels. Micro refers to children and parents, meso to medical institutions and healthcare providers (HCPs), and macro to policy/guidelines and networks. Most barriers were addressed by PPC guidelines, and most facilitators were acknowledged and endorsed in the guidelines. For instance, HCPs reported that insufficient PPC-related knowledge among stakeholders was a barrier, while PPC guidelines provided detailed information to address this shortfall. Unaddressed barriers in the guidelines were also uncovered, such as the cultural taboo of discussing death, suggesting that HCPs often struggled to have effective PPC conversations with parents and the child.

Conclusions: Our finding that PPC guidelines addressed most barriers/facilitators while HCPs still struggled with implementing PPC indicates that mature PPC guidelines are necessary but not sufficient for PPC practices to improve in these three regions. The wide availability of PPC guidelines and PPC education/training for HCPs and families needs to improve.

Keywords: Hong Kong; Taiwan; barriers; facilitators; guidelines; mainland China; palliative care; pediatrics.