SJD Barcelona Children's Hospital and IRSJD will lead a consortium consisting of 17 partners from 10 European countries, named Palliakid. The goal of Palliakid is to provide access to palliative care for children facing advanced, complex, or end-of-life illnesses, aiming to enhance their well-being and quality of life.
An estimated 21 million children globally require palliative care and more than 8 million children need specialised care during their illness and at end-of-life. In Europe, approximately 170,000 children in need of palliative care die yearly without access to it.
PALLIAKID is a new Horizon Europe health project (Grant N. 101137169) whose main objective is to investigate novel interventions to improve the wellbeing and quality of life for children and young people with palliative and end-of-life care needs, focusing on how to engage with patients' and family caregivers'. The initiative, funded by the EU with a nearly 7 million euros budget, was launched in December 2023 and will last 4.5 years.
The consortium comprises 17 partners in 10 European countries, including five clinical sites in Spain, Italy, Denmark, Finland and Latvia. Innovate UK is funding the project in the United Kingdom.
Dr Sergi Navarro, coordinator in the research group Paediatric chronicity and palliative care and Head of Palliative Care and Complex Chronic Patient Service at SJD Barcelona Children's Hospital and researcher at IRSJD, leads a team of experts dedicated to providing comprehensive care and individualized support to children and their families in palliative care situations. He and Dr Sílvia Ricart, both from the same service and a researcher, coordinate this ambitious project.
"Our team of experts has worked tirelessly to develop a programme that addresses the unique needs of children and young people, providing them and their families with the holistic care and individualised support they deserve." says Sergi Navarro.
The Pediatric Palliative Care and Complex Chronic Patient Service at SJD Barcelona Children's Hospital is the oldest service in Spain, having been operational for more than 30 years.
PALLIAKIDS focuses on three main areas of work
Firstly, the project aims to improve the early identification of patients with complex palliative care needs through the creation of predictive models. These models will differentiate patients based on their level of complexity, thereby enabling prompt, comprehensive, and planned assistance.
The second focus is to involve patients and their families, with the intention of developing instruments for a more precise assessment of requirements and expectations, facilitating interaction and involvement with the entire health care team
Finally, the project will focus on advance care planning, encouraging interaction between children, families, and healthcare teams throughout the course of the illness. Furthermore, a digital assistance tool, namely the Patient Journey platform, will be developed to enhance patient involvement and facilitate collaborative decision-making.
The 17 partners are meeting today in Barcelona in the PALLIAKID project kicked off
The first in-person meeting of the project is taking place today in Barcelona, marking the beginning of the work that will unfold in the coming years. SJD Barcelona Children's Hospital is hosting a two-day event attended by nearly 50 experts from across Europe. During these days, the 17 partners will present the project objectives, engage in discussions, and establish its scope and extent. These sessions provide an ideal occasion to introduce the consortium and establish the foundations for a highly successful collaboration.
The partners will also have the opportunity to gain firsthand insight into the palliative care approach of the hospital by visiting Casa de Sofia, under the guidance of Sergi Navarro. This initiative not only facilitates a comprehensive examination of the project details but also enhances the comprehension of SJD Barcelona Children's Hospital's commitment to palliative care among participants.
More information about the project and access their services, you can visit their website: https://palliativeprojects.eu/palliakid
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