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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

Mapping Places of Care and Death: The EOLinPLACE Project

Why does the place where people receive care and die matter so much, and how can better data help improve end-of-life care worldwide?


Where people spend the final phase of their lives is much more than a practical or medical matter. The place where care is received and where a person eventually dies often holds deep personal meaning. For some, that place is home, surrounded by family and familiar belongings. For others, a healthcare facility offers the comfort, safety, and support they need. Preferences and circumstances vary from person to person, but for everyone, the environment can shape the experience of the end of life. At the same time, we still know relatively little about where people spend their final phase of life and where they die. Data collection and registration systems differ between countries, making international comparisons difficult. The international research project EOLinPLACE aims to address this gap by improving our understanding of the relationship between people, care, and the places where end-of-life experiences unfold. 

The EOLinPLACE Project (End‑of‑Life in Place) is an international research initiative designed to understand, measure, and improve where people receive end‑of‑life care and where they die. The project is led by Prof Barbara Gomes, Floriani Chair in Palliative Care at the University of Coimbra in Portugal, and brings together global experts in palliative care, public health, bioethics, epidemiology, and health systems to create a standardised, comparable way of capturing this information across countries. The work is funded by the European Research Council. 

The EOLinPLACE is the project that developed and validated the International Classification of Dying Places (ICP)—the first global, person‑centred classification system about an end-of-life care matter, endorsed in March 2026 by the United Nations Statistical Commission as an international classification. Alongside the ICP, the project has been generating evidence through studies that explore disparities of dying places across different ages, diagnoses, countries, health systems, etc., in order to identify gaps, inequities and opportunities for systems strengthening.

EOLinPLACE recognises that:

  • Dying is an individual, relational and contextual experience
  • Place carries emotional, cultural, social, and identity‑based meaning
  • People deserve to be cared for—and to die—where they feel safe and supported

By capturing these realities in a standardised way, the project is helping shift global health systems toward compassion, dignity, and person‑centred care.

The International Classification of Dying Places (ICP) offers a shared global framework and vocabulary for describing and understanding “dying places”—both the locations where people die (babies, children, adolescents and adults) and the places where they receive care at the end of life. While death itself is a single event that occurs in one place and may happen unexpectedly, most people experience an end‑of‑life period that unfolds over weeks or months due to illness.

Place of death is a crucial population‑level statistic. It guides health and social policy, informs resource allocation, and helps ensure that services—including palliative care—are available where people actually die. Each year, an estimated 27 million people worldwide die with serious health‑related suffering that could benefit from palliative care, a number expected to double by 2060. Place of death also matters for other causes of mortality, such as injuries or self‑harm. Whenever possible, people should be able to receive end‑of‑life care and die in the place that feels right for them. Data on dying places therefore reveal how well health systems and societies support patient and family preferences.

The ICP addresses the need for an internationally consistent and standardized way to classify data on dying places. Although many countries already record place of death on death certificates or in civil registration systems, existing classifications are incomplete and inconsistent. As a result, international comparisons are often limited to broad categories such as “home” versus “hospital,” and even these comparisons lack rigour due to variation in definitions and what each category includes.

A major global reform of classification systems provides an opportunity to harmonize information so that countries can generate comparable data. Given the rapidly growing need for palliative care in the post‑pandemic era, this reform is timely. The potential benefits of accurately capturing where people die are enormous: better data can transform records, strengthen health systems, and improve care for everyone.

The ICP offers a comprehensive, hierarchical list of dying places designed to reflect what matters to individuals at the end of life. It goes beyond medical settings to include the social, emotional, and personal meanings attached to where people spend their final months, weeks, days, and hours—such as safety, privacy, identity, and connection to family life.

Summarised structure of the ICP 

Dying Places

A. Dwelling of Domicile
     A01. Individual
     A02. Collective
     A03. Other

B. Health or Care Facility
     B01. Hospital
          B0101. Emergency department
          B0102. Intensive care unit
          B0103. Palliative care unit or hospice within hospital
          B0104. Other inpatient unit (specify)
          B0105. Other (specify)
          B0106. Area unknown
     B02. Long-term care facility or nursing home
          B0201. Palliative care unit or hospice within long-term care facility or nursing home
          B0208. Other (specify)
          B0209. Area unknown
     B03. Palliative care facility or hospice facility
     B04. Primary care facility or community health centre
     B08. Other (specify)

C. Other facility

D. Vehicle

E. Outdoor

F. Elsewhere (specify)

G. Unknown

You can find out more on the project website.


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