Objectives: This study aimed to obtain an overview of the current research status of palliative care in Mainland China and identify research directions for future studies by characterizing palliative care studies conducted among patients with any life-limiting illness in Mainland China and published in a peer-reviewed journal before November 2016. Methods: A review guide with 7 categories was initially developed based on existing international palliative care definitions and guidelines through content analysis. Ten databases were used to identify relevant studies from the inception of online cataloging to November 2016. Studies conducted in Mainland China and their research topic that fell within one of the categories of the review guide were included for further analysis. Descriptive analysis was adopted to summarize the relevant findings. Results: 54 studies found to be relevant were included for the analysis. Three studies on “palliative care education and training” (category 1) asserted that education and training programs were scant in Mainland China and that only 1 program had been devised within the health-care context of Shanghai. Five studies on “palliative care screening and timely identification” (category 2) highlighted the absence of early screening criteria or checklists and referral procedures for palliative care. Thirty-one studies on “palliative care needs assessment (n = 12/31) and implementation (n = 19/31)” (category 3) were identified, and various methodological flaws were observed in most of these included studies. Twelve studies on “advanced decision-making” (category 4) were identified, all of which focused on investigating the attitudes of patients with cancer, their families, and/or health-care professionals toward advanced decision-making only. The percentage of patients, family members, and health-care professionals who held positive attitudes toward advanced decision-making were varied and suboptimal, particularly for family members (51.4%-58.0%). Five studies on “caring for patients at the end of life” (category 5) were identified, and the experience of health-care professionals in caring for those patients was explored. No studies relating to “death and bereavement care” (Category 6) and “psychological support for palliative care providers” (Category 7) were identified. Conclusion: The current research status of palliative care in Mainland China remains at an early stage with minimal palliative care services used. Although several knowledge gaps were identified, the first step, which should be addressed, is assessing the palliative care needs. An appropriate and ongoing needs assessment could provide important information for constructing comprehensive education and training programs of palliative care, identifying prognostic factors of timely palliative care referral, and developing evidence-based and tailored palliative care services.
Children’s palliative care education and training: developing an education standard framework and audit