The EU-funded PALLIAKID project is focused on evaluating new interventions specifically designed for children, adolescents and young adults (AYAs) with serious life-limiting illnesses. The project’s main objective is to develop and evaluate innovative tools to improve the well-being and quality of life (QoL) of children and AYAs with palliative and end-of-life care needs, family caregivers and professionals. Novel solutions, such as the PALLIAKID Early Detection System (EDS) and the PALLIAKID intervention [which includes the PALLIAKID Needs Assessment HexComPed tool, PALLIAKID IMPACT Advance Care Planning (ACP) tool, and PALLIAKID Patient Digital Platform] and, the PALLIAKID XR-based capacity-building program for healthcare professionals, will be developed and evaluated in 5 clinical sites in 5 different healthcare systems across Europe.
During the first 18 months of the project, PALLIAKID has successfully progressed on its pathway to impact through designing and developing both the EDS study protocol and the PALLIAKID Intervention tools (HexComPed and IMPACT), protocol, and evaluation framework. Both studies will serve to enhance coordination and integration between pediatric palliative care (PPC) services and increase QoL for the different actors involved in PPC. The highly participatory PALLIAKID approach - through co-creation sessions, living labs, focus groups, interviews and training sessions, as well as public engagement activities to reach to audiences beyond the project - has successfully integrated the perspectives and lived experiences of patients, siblings, family caregivers, and healthcare professionals from different disciplines into the design of the PALLIAKID tools. These participatory actions have in turn helped patients and families feel more heard and included, while also breaking down stigmas and taboos that exist around PPC and end-of-life care. Most of all, the highly participatory nature of PALLIAKID ensures that the designed tools foster patient- and family-centered care which can be tailored and adapted to diverse cultural contexts, with enormous potential impact for the estimated 21 million children that require PPC globally, as well as their families.
