Paediatric palliative care in the Asia Pacific region: where are we now?

Abstract

Paediatric palliative care services have increased both in numbers and capacity around the world in response to the needs of children living with life-limiting conditions. Members of the Asia Pacific Hospice Network, who render care to children, have increasingly realised the need to map existing services for enhanced collaborative, educational and advocacy efforts. An online survey was conducted over 2 months among professionals in the region to document current service provision, and at the same time to explore individual training needs and practice challenges. A questionnaire crafted through consensus by members of a new special interest group within the network was used to collect data. 59 distinct responses from 16 countries were obtained to build a directory, which has already been circulated. Content analyses of narrative responses yield further findings. Half of these services catered to adults as well as to children. Staffing and service provision varied across the region but most members worked in teams consisting of multidisciplinary professionals. Numerous service and funding models were found, reflecting wide differences in local conditions and responses to diverse patient populations unique to paediatric palliative care. The highest training needs centred around bereavement and spiritual care. Capacity and funding issues were expected, but significant lack of support by paediatricians was found to be alarming and warrants further study. Amid the heterogeneity, these services share common struggles and face similar needs. Identifying individual profiles of different services potentially helps to draw everyone together, towards a common vision, and towards creating opportunities for sharing of expertise and experience.

Keywords: Paediatrics; Service evaluation; Supportive care; Terminal care.