Current public perception of, and barriers to, palliative care in China: a mixed-methods study

Abstract

Cancer is a major cause of death in China, accounting for 2·56 million deaths in the country in 2018 alone. Yet, on that year, only 28 600 patients (1·1%) at the end of life received palliative care. Existing studies in palliative care have mainly been done in medical environments. The aim of this study was to focus instead on the general public and to identify the public's perceptions of, and demand for, various palliative care services, as well as barriers to palliative care in China. A convergent mixed-methods design was used to facilitate an understanding of the Chinese public's knowledge of palliative care services and the demand for palliative care. An interdisciplinary team of scholars and practitioners worked collaboratively to develop a contextually and culturally relevant questionnaire for the public in China (named KNPCP-1) to explore these issues. Quantitative and qualitative evaluation phases in the development of KNPCP-1 ensured its high validity. We did cross-over comparison analyses of the findings from the quantitative survey (conducted using KNPCP-1). Stata version 17.2 and NVivo version 12.6.1 were used for data analysis. 6120 people completed the qualitative surveys, and 19 survey respondents and 20 medical staff were also interviewed. No significant difference in knowledge of palliative care and general need for various palliative care services was found between men and women. A greater demand for palliative care services was found among rural respondents than among their urban counterparts. Convergent analysis indicates that factors or mechanisms associated with the low availability of palliative care services include scarce knowledge about palliative care, a cultural taboo around death, factors related to patient-clinician conflict, and the pressure on adult children to fulfil their filial duty of care for elderly parents. Several factors contribute to the low availability of palliative care services in China despite recent governmental awareness campaigns. Innovative and culturally sensitive approaches are needed to promote palliative care services in relation to the factors synthesised from the analysis. Ministry of Education of China, Youth Project of Humanities and Social Sciences (project number 20XJC840001); China Postdoctoral Science Foundation (project number 2021M691521); and 2020 Young Teacher Development Project of the Chinese Universities Scientific Fund (project number 230600001002020030).