Strengthening community based paliative care services: Towards a better understanding of medical aspects of caring for c

在疾病的缓解阶段照顾儿童[及其家人]是一项独特的挑战。以社区为基础的姑息治疗方案主要提供以成人为中心的服务，他们对儿童的经验受到人数较少的限制。本研究旨在通过在墨尔本皇家儿童医院（RCH）的一个大型代表性队列中进行父母调查，更好地描述澳大利亚临终儿童护理的医疗方面。重点将是查明与症状评估和管理、家庭和照顾者支助以及丧亲心理社会支助有关的问题。所获得的知识将用于重新设计，加强儿科医院和社区姑息治疗计划之间的联系。

Caring for children [and their families] in the palliative phase of an illness offers unique challenges. Community based palliative care programs provide a predominantly adult focused service, their experience with children being limited by smaller numbers. This study aims to better characterize the medical aspects of caring for terminally ill children in Australia, thru the use of a parental survey in a large representative cohort at the Royal Children's Hospital, Melbourne (RCH). The focus will be to identify issues relating to symptom assessment and management, family and caregiver support and psychosocial-bereavement support. The knowledge gained will be used to redesign-strengthen links between paediatric hospitals and community based palliative care programs.