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Projects

Holistic Oncological Palliative Care 4 Europe’s Kids (Hope4Kids)

The Hope4Kids – Holistic Oncologic Palliative Care for Europe’s Kids - Joint Action aims to strengthen and harmonise paediatric palliative care (PPC) across Europe for all children living with life-threatening or life-limiting conditions.   

Across Europe, many children live with severe, complex or rare chronic conditions that significantly affect their quality of life and, in many cases, may shorten life expectancy. PPC is not limited to end-of-life care – it is an active and holistic approach that can be provided from the moment of diagnosis, regardless of disease type or stage, and alongside disease-specific or life-prolonging treatments. The aim of PPC is to prevent and relieve suffering through effective management of pain and other distressing symptoms, as well as to provide psychological, social and spiritual support to children and their families.   

Access to specialised PPC across Europe remains uneven, and care is often integrated late or inadequately into routine paediatric services. As a result, children, their families and informal caregivers frequently experience inconsistent care. Hope4Kids responds to these challenges through a comprehensive and coordinated approach. Key deliverables include mapping of PPC systems across Europe; development of harmonised, evidence-based guidelines in PPC; implementation and evaluation of four pilot interventions across more than 17 study sites; and development of education and training programmes for healthcare professionals, parents and informal caregivers such as teachers. Hope4Kids will also build a European PPC network of professionals and collaborate with other European projects.  

The Hope4Kids project has a duration of 4 years and is coordinated by the Princess Máxima Center for pediatric oncology in the Netherlands. The initiative is built on the cooperation of more than 50 partners and over 70 organisations from 23 European countries. Through this collaboration, Hope4Kids addresses inequalities in access to PPC, quality of care, and integration into health systems. Ultimately, this will ensure that every child and family have timely access to high-quality PPC, regardless of place of residence. 

“Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.”

 

Lees hier de Nederlandse beschrijving

De Europese Joint Action Hope4Kids – Holistic Oncologic Palliative Care for Europe’s Kids -heeft als doel de kinderpalliatieve zorg te versterken en te harmoniseren voor alle kinderen in Europa met een levensbedreigende of levensverkortende aandoening. In heel Europa leven veel kinderen met ernstige, complexe of zeldzame chronische aandoeningen die hun levenskwaliteit aanzienlijk beïnvloeden, en in veel gevallen de levensverwachting kunnen verkorten. Kinderpalliatieve zorg beperkt zich niet tot zorg aan het levenseinde – het is een actieve en holistische aanpak die kan worden geboden vanaf het moment van de diagnose, ongeacht het type of stadium van de ziekte, en naast ziektespecifieke of levensverlengende behandelingen. Het doel van kinderpalliatieve zorg is het voorkomen en verlichten van lijden door middel van de effectieve behandeling van pijn en andere verontrustende symptomen, evenals het bieden van psychologische, sociale en spirituele ondersteuning aan kinderen en hun families. De toegang tot gespecialiseerde kinderpalliatieve zorg in Europa is nog steeds ongelijk verdeeld, en deze zorg wordt vaak pas laat of onvoldoende geïntegreerd in de reguliere zorg. Als gevolg hiervan krijgen kinderen, hun families en informele zorgverleners (zoals leerkrachten) vaak te maken met inconsistente zorg. Hope4Kids biedt een antwoord op deze uitdagingen door middel van een alomvattende en gecoördineerde aanpak. Belangrijke doelen zijn onder meer het in kaart brengen van kinderpalliatieve zorgsystemen in heel Europa; de ontwikkeling van geharmoniseerde, evidence-based richtlijnen voor kinderpalliatieve zorg; de implementatie en evaluatie van vier pilots op meer dan 17 onderzoekslocaties; en de ontwikkeling van onderwijs- en trainingsprogramma's voor zorgprofessionals, ouders en informele zorgverleners. Hope4Kids zal ook een Europees netwerk van kinderpalliatieve zorgprofessionals opzetten en samenwerken met andere Europese projecten. Het Hope4Kids-project heeft een looptijd van 4 jaar en wordt gecoördineerd door het Prinses Máxima Centrum voor kinderoncologie. Het initiatief is gebaseerd op de samenwerking van meer dan 50 partners en meer dan 70 organisaties uit 23 Europese landen. Door deze samenwerking pakt Hope4Kids ongelijkheden aan op het gebied van toegang tot kinderpalliatieve zorg, kwaliteit van zorg en integratie in gezondheidszorgstelsels. Uiteindelijk zal dit ervoor zorgen dat elk kind en elke familie tijdige en holistische kinderpalliatieve zorg kan ontvangen, ongeacht waar in Europa zij zich bevinden.

Linkedin

Linkedin: @JA Hope4Kids

Contact

Contact information: wp2@kinderpalliatief.nl

Partners

International Children’s Palliative Care Network (ICPCN)

ICPCN is a global network seeking to improve acces to children’s palliative care. ICPCN’s network includes members in more than 140 countries. Members have access to ICPCN’s newsletter and online resources including educational content in many languages. ICPCN advocates for access and quality of children’s palliative care with the World Health Organization and other global platforms.

ICPCN

European Association for Palliative Care (EAPC)

EAPC is a professional organization “committed to supporting the promotion and development of palliative care throughout Europe and beyond”. Our Center staff frequently attend and present at the EAPC annual conference. In addition they serve in leadership positions and support the administrative work of the EAPC Reference Group for Children and Young People. Our Director, Meggi Schuilling-Otten is currently Chair of the EAPC Reference Group for Children and Young People. This group serves to promote children’s palliative care throughout Europe.

European Association for Palliative Care

Maruzza Foundation

The Maruzza Foundation works to ensure the right to access palliative care for all children who need it. The Maruzza Foundation hosts the Maruzza International Congress in Rome, a major gathering for paediatric palliative care researchers and clinicians.

Maruzza Foundation

Resources

Courageous Parents Network

CPN aims to orient, equip and empower families and others caring for a child with a serious medical condition and provide digital resources and an extensive media library used by families and clinicians.

Center to Advance Palliative Care

The Center to Advance Palliative Care is a US based organization that has supported the growth of palliative care as a specialty clinical service since 1999. Their website offers free resources on pediatric program development, marketing of palliative care, and educational offerings for operations managers and clinicians. Program Development. 

Center to Advance Palliative Care

Childhood Cancer International

CCI is the largest childhood cancer patient support organization, with member organizations in more than 100 countries.

Childhood Cancer International

Together for Short Lives (TFSL)

TFSL is a UK based organization that provides family support (emotional and financial), advocates for children’s palliative care in the UK, and providers resources to clinicians working with children who have life-limiting illnesses. TFSL also hosts an online provider network where clinicians can share expertise with one another.

Research Resources

International News

Transforming paediatric palliative care with AI and co-design

How AI is transforming care: insights from Prof. Masserdotti’s innovations.


Alessandro Masserdotti is an Italian philosopher specializing in the philosophy of science and a designer focused on human-technology interaction. As a Professor of Interaction Design at Politecnico di Milano, he bridges academic research and innovative design practices. He is also the Digital Director of Dotdotdot Agency, an organization dedicated to connecting open-innovation culture with the philosophy of healthcare and design. Based in Milan, Alessandro combines theoretical insights with practical approaches, contributing to discussions about the role of technology in shaping our society.

Prof. Masserdotti, you spoke at the 6th Maruzza International Congress of Paediatric Palliative Care as an expert in Artificial Intelligence. Can you give us some more information about your professional background and your work? 

There are countless ways to engage with technology. My personal journey towards it was originally shaped by questions and themes rooted first in philosophy of science and then in interaction design during my university years. This perspective frames technology not as an end but as a discipline capable of profoundly influencing relationships - both among people and between humans and the world around them.

I co-founded Dotdotdot in 2004 with two architects and a designer - to push the boundaries of design and technology in their relationship with people. While a social dimension has always been present in our work, it wasn’t until 2014 that we launched OpenDot, a fab lab and innovation hub dedicated exclusively to projects with a social impact in the fields of health and care, education, and the circular economy. 

Both Dotdotdot and OpenDot – that will become a Foundation in 2025 – are deeply rooted in research, and follow a co-design approach, involved in our iterative creative process - from the research phase to prototyping and testing - all stakeholders involved, also using specifically developed tools and techniques. This is of particular importance when dealing with projects in the field of health and care where patients, caregivers and medical staff are often the best problem solvers. 

In your experience, to date, what support can new technologies, including AI, give to healthcare professionals working in PPC? 

In our work, we have been leveraging digital technologies in health and care for years. In collaboration with a foundation dedicated to kids with disabilities – Fondazione TOG –  we work with children with wide arrays of issues, both cognitive and motor disabilities, some of which also apply to kids in PPC. Together with TOG, through applying a co-design approach that actively involves caregivers and patients in all creative processes, we have developed a series of customisable items, such as writing aids, tutors, and toys. These are created using parametric design to meet the diverse needs of children with various disabilities.

Moving beyond product design, digital technologies offer substantial support to caregivers and health professionals by intelligently utilising data. Indeed, beyond their key role in collecting and analysing data for prevention, digital architectures enable the creation of interconnected networks among stakeholders to solve very practical issues – for both families, medical staff and researchers. 

We are, for instance, collaborating with the leukodystrophy research and care center Coala of the Buzzi Hospital in Milan to develop a digital platform that consolidates patient information. This platform helps parents and medical teams manage appointments, monitor treatments, and track progress within a single digital folder, reducing the families’ stress associated with managing rare diseases (that require moving amongst several doctors, often located far from home). This particular requirement emerged after an analysis of needs that we carried out together with the Coala center amongst the families of patients, researchers and medical staff (both within Coala and throughout the whole Italian territory).

In the context of PPC, digital tools can be used to enhance communication and engagement. In the project TOP! (Together to Play), developed with Fondazione TOG, we created a suite of customisable video games controlled via eye-tracking technology. These games enable children with complex neuropathologies to interact, express emotions, and understand therapeutic processes. Caregivers can tailor the games and use collected data to monitor engagement and improvement.

Another project, SayEye, incorporates adaptive machine learning for automatic eye-tracker calibration, offering a highly personalized experience. This open-source system includes PC software, an eye tracker, and a mobile app for creating intuitive content. SayEye supports rehabilitation sessions and everyday communication, allowing caregivers to simplify interactions. For instance, a caregiver can photograph a bar counter, send options to the care receiver, and the child can indicate their choice using eye-tracking on their tablet.

And in the future? What practical applications are being developed to improve the quality of life of young patients and the work of professionals? 

In palliative care, the wellbeing of patients takes precedence, encompassing both psychological and emotional health. It therefore becomes fundamental to monitor these parameters and build tools that are able to empathize with patients by adapting and improving their states of stress and anxiety. AI - especially in the form of Affective Computing - becomes a key supporting technology to do this.

Together with partners, we have for instance explored Brain-Computer Interfaces (BCIs) that analyze real-time data from electroencephalograms (EEGs). Although EEG data currently lacks the precision needed for reliable systems that allow young patients to communicate emotions like stress, ongoing advancements suggest this is a critical direction for integrating AI into PPC. Developing more refined tools could revolutionize emotional understanding and patient care in this field.

In your opinion, what are the elements of clinical practice that will remain the prerogative of humans? In which aspects of the care relationship can humans not be replaced?

All technology, including AI algorithms, are tools and must be considered as such. It is part of the history of contemporary medicine, starting from surgery and pharmacology, that technology is improving the quality and duration of our lives. These tools must first be understood and known in order to be applied and used in a conscious manner. The human component has two irreplaceable prerogatives and roles in this. The most obvious one is the control and monitoring of results and solutions; the second, which is perhaps less obvious, is figuring out how these technological solutions can be applied and how they can innovate the field in which they are used. Technology is a means to innovate but it is not enough on its own. We need human imagination to conjure up ideas on how it should be applied and in which fields it can have the greatest positive impact.

How can healthcare professionals and AI specialists collaborate to develop solutions that are both ethical and effective for this sensitive demographic? Could you share practical examples where such collaboration has proven successful? 

Patients and their caregivers are often the best innovators because they understand their needs and know exactly how solutions should work. The same applies to healthcare professionals, who bring valuable expertise. After years of research, experimentation, and designing tailor-made solutions for people with disabilities, we partnered with the TOG Foundation to formalise our approach into a shared, repeatable methodology. This methodology is open source and centers on co-design, digital manufacturing, and rapid prototyping.

We started with a simple question: “We are all different, so why take care of everyone in the same way?” From there, we developed tools and a structured process to bring together designers, therapists, families, caregivers, and care-receivers in a collaborative design journey.

This process involves every stage of design: identifying needs, turning them into design requirements, brainstorming creative ideas, prototyping, and testing. It’s an iterative approach, requiring trial and error, and always aiming for total customisation. Digital technologies, such as rapid prototyping and digital manufacturing, make this level of customisation possible.

These tools also apply to designing AI solutions, where the focus shifts to the interface - ensuring patients, doctors, and caregivers can interact with the technology intuitively to achieve specific outcomes. For example, projects utilising pupil monitoring through machine learning models enable the assessment of stress levels in patients who struggle - or are entirely unable - to express or convey their emotional state. This technology helps caregivers better understand and address the stress levels of such individuals.

Importantly, our method doesn’t just focus on functionality. Aesthetics also play a critical role, particularly for younger patients, where the design’s appearance can significantly impact psychological well-being.

The results of this process are parametric, customisable solutions or open-source designs, created to be accessible to as many people as possible. The method has been so successful that it now underpins all our OpenDot projects and has helped us secure EU funding for collaborative initiatives. It has also inspired a collection of solutions developed with the TOG Foundation under the “Unico” brand - an open-source platform for accessible, innovative, and personalized care.


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