Our Work
ICPCN is the only global organisation working to improve access to palliative care to the 21 million children worldwide who need it. ICPCN is recognised globally as the leader for CPC and has a globally renowned expert leadership, a wealth of educational resources and a network of members in over 140 countries. Through this network, ICPCN are uniquely placed to advise, educate and support at a national and regional level on best practice in CPC. As a central repository for information relating to CPC and with a global perspective of what is happening in the field, ICPCN are in an ideal position to strategically advocate for the development and improvement of services, the creation of palliative care policies that include children and their families and the implementation of these policies, thus increasing access to CPC.
ICPCN’s Values and Beliefs
ICPCN’s goal for 2019-2023: To reinforce our position as the global expert in CPC, developing further as a hub of information, education and support services on CPC and harnessing the network to deliver communications, advocacy, research, education and strategic development on behalf of ICPCN
ICPCN’s Values and Beliefs
ICPCN is committed to the development of CPC globally. The following values underpin all that we do: passion; empathy and respect for all; empowerment; leadership; innovation; professionalism; integrity; accountability; diversity; evidence-based care and support; collaboration; teamwork; and quality.
ICPCN believes that:
- All children and young people and their families have the right of access to PC;
- PC should begin at diagnosis and continues into bereavement and can be provided wherever the child is;
- The child and their family are at the centre of the care we provide;
- The family are the primary caregivers and need to be empowered;
- Collaboration is key to the ongoing development of CPC globally, and children and parents have an essential role in this;
- CPC is about living life to the full.
We aim to achieve our mission by raising awareness of children’s palliative care, advocating for the global development of children’s palliative care, expanding the evidence-base and sharing expertise, skills and knowledge. We do this through five strategic focus areas:
Communications
The provision of up-to date information is one of ICPCN’s core functions. This is accomplished through a variety of means including this website, ehospice, our social medial platforms, reports and regular membership alerts and monthly newsletters.
Advocacy
ICPCN aims to provide the global voice for children’s palliative care and to advocate for the rights of children to receive the palliative care they require.
Research
ICPCN believes that research and its dissemination is an important component of the development of children’s palliative care globally. Increasing the evidence base is vital to improve care provision, along with service delivery, education and advocacy.
Education
ICPCN recognises the importance of making training of children’s palliative care accessible and affordable to all who need it. Thus, providing both face-to-face and online training to care providers around the world.
Strategic Development
ICPCN supports the strategic development of children’s palliative care services worldwide through equipping, empowering and supporting network members.
The WHO Conceptual Model
In 2021 the WHO published their “Conceptual model for palliative care development”. The model was developed during the process of the development of indicators for palliative care through consensus by experts. This includes the adaptation of the four components previously deemed essential to palliative care development: appropriate policies, access to medicines; education; and implementation. The new model develops this further to include research and empowered people and communities.
This model forms the basis for the work that ICPCN undertakes with regards to the development of children’s palliative care and is reflected throughout ICPCN CARES.
Communications
To create a step-change in global awareness of ICPCN messages and access to ICPCN resources by reinforcing ICPCN’s position as the global authority on children’s palliative care and as a hip of information and resources, and by using a strategic combination of “pull” and “push” communication strategies to achieve a wider reach.
The provision of up-to date information is one of ICPCN’s core functions. This is accomplished through a variety of means including this website, ehospice, our social media platforms and regular membership alerts and monthly newsletters.
Regular updates on news and events in the world of children’s palliative care are published to this site and monthly newsletters sent to members. The ICPCN is also responsible for the International Children’s edition of ehospice. Both websites and news platforms are edited by ICPCN’s Communications Manager. You can also sign up here to receive the weekly newsletter from ehospice, covering articles from the different editions.
As a network we are always keen to hear about any news, events or interesting information on children’s palliative care from your organisation or your part of the world. We also want to ensure that our website is up to date and informative, so please do let us know of new resources that are available, of training programmes that are being developed, of new services, of 10 year celebrations – what ever it might be – we would like to share your stories, to show others what you are doing, to learn from each other and celebrate milestones with each other. So please do send your news and stories to our Communications Manager at communications@icpcn.org
Social Media
Networking
There are many networking opportunities for ICPCN members. Use our Directory or our Map of Services to find other children’s palliative care organisations around the world and open communication with them. We will also be happy to put you in touch with others in your field and assist with communication between hospices, individuals and organisations.
We often get asked if we know CPC or PC providers in different parts of the world to help facilitate individuals returning home and receiving PC and so we liked to keep our map of services as up to date as possible – if you are part of a CPC service that is not included please do contact us on communications@icpcn.org
ehospice
ehospice is a globally run news and information resource committed to bringing the latest news, commentary and analysis from the world of hospice, palliative and end of life care to readers. ICPCN is responsible for the content of the International Children’s edition. Published articles on this edition cover a wide spectrum of topics relevant to people who care for and care about children with life-threatening and life-limiting illnesses. Please do send your stories and updates to us so that we can share them on ehospice.
Membership
By joining ICPCN you will become part of the network of >4,500 individuals and organisations working together to increase access to children’s palliative care globally.
> 4,900 individual members
> 430 organisational members
> 150 countries represented by members
> 190 countries represented through our activities
Advocacy
To work towards inclusion of CPC in Universal Health Coverage (UHC) worldwide by carrying out targeted strategic advocacy with world leaders at a global, regional and national level, use of a suite of WHO-approved advocacy resources which are adaptable at country level; and by harnessing the network to use these resources to strategically advocate in their own localities.
ICPCN aims to provide a global voice for children’s palliative care and to advocate for the rights of children to receive the palliative care they require.
ICPCN works closely with partners around the world. These include:
International Palliative Care Networks:
- The Worldwide Hospice and Palliative Care Alliance (WHPCA),
- The International Association of Hospice Palliative Care (IAHPC),
- Palliative Care in Humanitarian Aid Situations and Emergencies (PALLCHASE)
Regional Palliative Care Networks
Other International and Regional Organisations with whom we collaborate on advocacy activities:
- The World Health Organization (WHO) – Head office plus regional offices
- The International Council of Nursing (ICN)
- The International Society of Paediatric Oncology (SIOP) – both the international and regional parts of the organisation
- Childhood Cancer International (CCI)
- St Jude Global
- The International Society of Nurses in Cancer Care (ISNCC)
- The Global Power of Oncology Nursing (GPON)
- World Child Cancer (WCC)
- The African Organisation for Research and Training in Cancer (AORTIC)
- The Commonwealth Nurses and Midwives Federation (CNMF)
- The World Patient Alliance
- WHO Collaborating Centres e.g. The Cicely Saunders Institute, Kings College London, The ATLANTES Global Observatory of Palliative Care, University of Navara.
- The Global Health Academy, University of Edinburgh
- The Elizabeth Kubler Ross Foundation (EKR Foundation)
- St Christopher’s CARE, St Christopher’s Hospice
We work with others partners as appropriate such as UNICEF, UNAIDS, Save the Children, NCD Child and PORTAGE.
We believe that Advocacy is best done together – we have more strength in numbers. We work closely with the WHPCA, IAHPC and PALLCAHSE, with each organisation taking the lead on specific issues, working in collaboration with each other:
- ICPCN taking the lead on issues related to children’s palliative care and palliative care nursing – both of which cut across all other areas.
- WHPCA taking the lead on issues related to Universal Health Coverage (UHC)
- IAHPC taking the lead on issues related to access to medicines.
- PALLCHASE taking the lead on issues related to humanitarian issues.
When supporting advocacy work in individual countries, ICPCN works closely with the national palliative care organisations, and national children’s palliative care organisations where they exist.
PC Campaigns
ICPCN supports a range of palliative care campaigns, aimed at advocating for children’s palliative care. The two main ones include:
- ICPCN’s #HatsOn4CPC campaign which is held on the second Friday of October every year – more information can be found here
- World Hospice and Palliative Care Day (WHPCD) – this is held on the second Saturday of October – In 2023 it will be on the 14th October with a theme “Healing Hearts and Communities” – more information can be found here.
Position Statements
ICPCN has produced various position statements over the years which include the following:
- Global Position Paper on Children’s Palliative Care (Coming soon)
- The ICPCN Commitment of Buenos Aires May 2016
- The ICPCN Mumbai Declaration 2014
- The ICPCN Declaration of Cape Town 2009
Global Projects
As part of our Advocacy ICPCN are involved in a wide range of global projects – these include, but are not limited to, the following:
- Assessing the development of palliative care worldwide: a set of actionable indicators
- The quality of death and dying Index
- The Global Initiative for Childhood Cancer (GICC)
- The WHO guidelines development on ensuring access to medications
Official Relations with the WHO
ICPCN is in the process of gaining official relations with the WHO – this takes several years and we hope to have this finalised in the next 6-12 months.
ICPCN’s Charter on Children’s Palliative Care
ICPCN developed a Charter on the rights for life-limited and life-threatened children. It sets out the international standard of support that is the right of all children living with life-limiting of life-threatening conditions and their families. It is available here on the website in English and in a wide range of other languages.
Research
To expand the evidence-base for CPC through initiating research, collaborating on research in strategic areas, supporting other organisations with resources and signposting to carry out their own research and disseminating research for maximum impact.
The ICPCN believes that research and the dissemination of findings is an important component of the development of children’s palliative care globally. Increasing the evidence base for children’s palliative care is vital in order to improve the care provided, along with service delivery, education and advocacy. Dissemination of research results, and the sharing of experiences is vital to building capacity for children’s palliative care.
Whilst not an academic institution, ICPCN is committed to the development of research and works with a range of organisations to achieve this, including King’s College London, the University of Edinburgh, the University of Miami, St Jude’s Global and more.
We work in the following ways:
Through driving and initiating research – here we collaborate with research institutions to help frame the children’s palliative care research agenda but identifying key research questions that need to be carried out, identifying core partners needed to undertake the research, and implementing the research.
Through collaborating on research in strategic areas for global children’s palliative care – including collaborating with children and young people receiving palliative care.
Through supporting research and providing “lift-touch’ support to members and/ or other organisations by sharing resources and connecting people
Through disseminating research – sharing the growing evidence base with health professionals (including non-palliative professionals who work with children), policy makers and other stakeholders for maximum input.
Current situation of Research in CPC
Globally, the evidence for children’s palliative care is poor and mainly users retrospective and proxy methods. There has been a lack of outcome measures for children’s palliative care and there is a need for more multi-country studies that represent the diversity of groups of children and young people needing palliative care. This lack of evidence has been highlighted by the WHO.
We are committed to increasing the evidence base and writing and contributing to papers in the field. Examples of papers we have published can be found here.
Examples of current research projects that ICPCN are involved in:
- Integration of a child and family cantered outcome measure into children’s palliative care at 3 Ugandan demonstration sites, developing data usage plans for quality improvement and to deliver a manual for regional adoption. NIHR Global Health Research Group on Global Health and Palliative Care (GHAP): expanding access
- Development of a Children’s Palliative Outcome Scale in the UK
- The MyPal Project: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems – utilising gaming in children’s palliative care (Grant Agreement number 825872. European Union Horizon 2020 research and innovation programme)
- Children’s understanding of illness, death and dying
- The Palliative Assessment of Needed Developments & Modifications In the Era of Coronavirus Survey. (PANDEMIC study)
- The PROTECT study: Pediatric Oncology Tool for End-of-life Care Treatment: Quality Indicators in End-Of-Life Care for Pediatric Oncology Patients in Resource Limited Settings
- EOLinPLACE Project “Choice of where we die: a classification reform to discern diversity in individual end of life pathways” (Grant Agreement number: 948609, funded by the European Research Council).
- Estimating the Global Burden of Serious Health Related Suffering 3.0 (SHS 3.0) – strengthening the framework to estimate global need.
Education
Education: To develop as a hub for provision of training information; to provide high-quality CPC education which meets an identified global need; and to support and empower the ICPCN network to train in their own localities, thus improving the care given to children and their families.
ICPCN believes that using education to respond to the global need for children’s palliative care is essential. ICPCN primarily uses two approaches to increase access to training on CPC: face-to-face learning and e-learning training, which is offered free of charge online. However, since the COVID – 19 Pandemic, ICPCN has initiated and collaborated with strategic partners to produce a range of educational webinars.
e-learning
The ICPCN e-learning platform has made considerable strides since its inception 12 years ago with over 8,600 users representing six WHO geographic regions currently enrolled on the site. A range of short courses on various aspects of CPC are available on our e-learning site and they are free of charge. Courses are endorsed by the University of South Wales and are available in a range of languages, these include English, French, Portuguese, Spanish, Mandarin, Dutch, Czech, Serbian, Russian, Vietnamese, Farsi, Bengali, Hindi and Malay.
e-learning
Courses include:
- Introduction to palliative care in children
- Pain assessment and management
- Communicating with children and other emotional issues
- Child’s development and play in CPC
- Grief and Bereavement in CPC
- End of life care in CPC
- Neonatal Palliative Care: An Introduction
- Symptoms other than Pain
- Adopting a CPC approach to the COVID -19 Pandemic
- CPC in Humanitarian Settings
Face to face training
ICPCN collaborate with local and regional partners to offer a range of CPC educational workshops to individuals and organisations, these include:
- An introduction to CPC
- Advanced CPC workshops
- Pain workshops
- Train the trainer
- Bespoke courses
Thus far over 1,200 participants from >24 countries have been trained. Recently an evaluation of ICPCN’s education programmes for the period 2011 till 2021 was undertaken. The aim of this evaluation was to assess the impact of the face to face and online courses and to shape future improvements in both course content and presentation.
Other educational activities
ICPCN support education through supervision of BSc, MSc and PhD students, external examining and providing technical advice. We also undertake curricula review, curriculum development and technical assistance.
Mapping of CPC education programmes globally
ICPCN has commenced the process of mapping and reviewing CPC education programmes globally. To date we have reviewed 114 course, 25% of these are specialist level course and 75% generalist level courses. Of the courses reviewed to date the highest number are in Europe (EURO) and the smaller number in the East Mediterranean Region (EMRO). Our mapping exercise is on-going and we are looking at how best to share the results, along with the availability of courses in the different regions and countries.
Webinars
ICPCN, has been running regular monthly webinars for several years now and after a brief break they are back and we are looking forward to having three webinars over the next four months. We have decided to take a break in October due to the class with the Rome CPC conference. All webinars are recorded and are available here on our Education and Research Hub
Our webinars are held on the 3rd Thursday of the month from 1-2.30pm (UK time) and are free of charge. In recognition that we are all in different time zones they will be recorded and are available through our Education and Research Hub. The next three webinars are as follows:
- Thursday 19th September 1-2.30pm UK time – Working with children and families in CPC research
- Thursday 21st November 4-5.30pm UK time – The management of complex pain
- Thursday 12th December 1-2.30pm UK time – Exploring and utilising service data and information in CPC
Please note the change in date for December and also time in November
ICPCN’s Webinars
Global Palliative Care Series
ICPCN partnered with WHPCA, IAHPC and PallCHASE to develop the Global Palliative Care series of webinars and accompanying set of Briefing Notes. This webinar series was developed in the second and third quarters of 2020 in response to the COVID -19 Pandemic. There were four paediatric focused Briefing Notes which provided a brief synopsis of globally relevant information and guidance relating to aspects of paediatric palliative care in the context of the COVID-19 pandemic and they can be found here, along with more on the Global Palliative Care Series, including the briefing notes, webinar recording and slides.
Access here
ICPCN Conferences
Prior to the pandemic, ICPCN ran an international conference every couple of years and we are currently planning for our next ICPCN conference in 2024 – More details to follow.
Conferences to date have included:
- Transforming Palliative Care – From ideas to action: Mumbai 2014
- Children’s Palliative Care – Now: Buenos Aires 2016
- Inspiration, Innovation, Integration: Durban 2018
Other Conferences
Alongside this, ICPCN works with and has supported a range of conference around the world, including, but not limited to:
- The EAPC World Congress (held annually)
- The APCA Regional Congress (held every three years)
- The APHN Regional Conference
- The ALCP Regional Conference
- The PCAU/UCI conference (held every two years)
- The Indian Association of PC conference (held every year)
- Pioneering Nurses Conference
- Global Power of Oncology Nursing Conference (held every year as part of London Global Cancer Week)
- International Cancer Congress run by the International Society of Nurses in Cancer Care
- UICC World Cancer Congress
- SIOP congress and SIOP regional congresses
- Maruzza Foundation on children’s palliative care in Rome (held every two years)
- Other country conferences e.g. Kazakhstan. Portugal, Belgium, Italy, Hong Kong, China, ASCO, EAPS, Turkey, Child Bereavement UK, Austria, Japan, Palestine, Kenya, UK, Indonesia, Malaysia, South Africa, Germany, UAE, France, Serbia, Australia, Canada, Belarus, Czech Republic, Hungary, Zambia and Namibia.
Strategic Development
Strategic Development: To support the strategic development of children’s palliative care services worldwide through equipping and empowering the network with resources, training and mentorship and facilitating the development of centres of excellence in strategic locations.
Supporting the development of children’s palliative care services worldwide is a core component of ICPCN’s work, although how we do it and the support that we give will vary. Through our work we seek to empower and equip those wanting to establish children’s palliative care services around the world. Whilst we currently don’t have funding to give, we provide advice and comprehensive resources and connect organisations and children’s palliative care champions for mutual learning.
We also support the development of centres of excellence in strategic locations. We provide technical assistance in the provision of all aspects of children’s palliative care service development, drawing on the expertise of our members as appropriate.
Organisational focus
The five strategic goals are underpinned by goals in three areas of organisational focus, which are the necessary changes in the organisation required for ICPCN to achieve the strategic goals.
Funding: To increase ICPCN’s revenue resilience, ensuring multiple revenue streams and sustainability.
Workforce and Governance: To ensure ICPCN has staff with the right skills in the right place to deliver the strategic plan; along with the right board, governance and management procedures to effectively operate the organisation.
Collaboration: To formalise collaborations with global organisations, regional networks, national associations, organisations, health professionals, and parents and children in the delivery of all ICPCN activities.