PALLIAKID: Comprehensive Paediatric Palliative Care Approach

点击翻译按钮获取中文摘要

PALLIAKID is an interdisciplinary project aiming to evaluate the feasibility, effectiveness, and cost-effectiveness of novel interventions for children, adolescents and young people (AYA) with palliative and end-of--life care needs in different healthcare systems across Europe, with a focus on those factors that influences the active patients' and family caregivers' engagement. PALLIAKID responds to several needs or gaps identified by the consortium clinical partners, grouped into three cornerstones of paediatric palliative care: 1) Early identification of children and AYAs with palliative and end-of-life care needs, 2) Comprehensive assessment of children and their family caregivers' needs, 3) A comprehensive, personalised, interdisciplinary care plan including Advance Care Planning. The proposed solution entails three main results: PALLIAKID Eary Detection System, PALLIAKID intervention (Needs assessment, Advance Care Planning and Patient Journey digital platform); and PALLIAKID XR-based capacity-building program for professionals. In addition, the project will develop policy recommendations, guidelines and standards for patient-centred communication, together with a scale-up strategy to guarantee the project result's’ sustainability and impact. In this sense, PALLIAKID aims to reduce taboos and misunderstandings of paediatric palliative care with its activities and the planned Public Engagement Strategy. The consortium is composed of 19 entities with the needed and complementary expertise and knowledge to respond to the proposed objectives, including the triad perspective (childfamily-professional): five clinical sites to co-design and test the PALLIAKID solutions, two European networks, four experts in the needs assessment and ACP tools to be adapted (HexCom and IMPACT), three technological partners, one expert in evaluation, three experts in SSH and one expert in data and ethical issues.