In assessing the impact of ICPCN it is agreed that:
- ICPCN has developed a strong global reputation and is recognised by the World Health Organization, and globally, as the global voice for children’s palliative care
- ICPCN has a unique role as the global network working to improve access to palliative care to the 21 children who need it.
- ICPCN has a high level of expertise, with committed, experienced staff and globally renowned expert leadership.
- Through their network ICPCN are uniquely places to advise, educate and support at a national, regional and global level on best practice in children’s palliative care.
- ICPCN has a clear vision, mission and niche upon which the strategic plan builds
- ICPCN has grown its members to >4,000 individual and >400 organisational members from >140 countries around the world.
- ICPCN has made significant progress towards its previous strategic plans, and is working towards the implementation of its current strategic plan.
- ICPCN has strong credibility in terms of education, research, advocacy and strategic development.
- ICPCN has seen the development of children’s palliative care grow globally since its inception, whilst recognising the need for ongoing development.
Hearing stories as to how ICPCN has impacted on the development of children’s palliative care is always very encouraging. You can read some of those stories here.
Further achievements can be found in each of ICPCN’s strategic focus:
- Strategic Development
Further information on some of the achievements of ICPCN over the years can be found on the timeline here.
The best way to see the impact of the work of ICPCN is to see the impact of palliative care on the care of children with life-limiting and life-threatening conditions and their families. Here are some stories from our ICPCN members around the world.
The major impact of our communication is that members along with those looking for information on children’s palliative care, can access the information and resources that they need, are kept up to date on developments, and are linked in with other members as appropriate.
Martha (not her real name) is a young girl with a high-grade brain tumour. She was being treated in the UK but her family wanted to take her home to Kenya where they live about 5 hours out of the capital Nairobi. The Consultant in the UK contacted ICPCN and we were able to put her in touch with a team in Kenya, so that they could organise transferring her, assessing what medication she will need to take with her, and what services will be available when she gets home. She wanted to be cared for at home, and so they arranged for the local palliative care team to care for her.
ICPCN utilises a variety of forms of social media
- Facebook – >12,930 followers
- Twitter – >3,910 followers
- Instagram – >770 followers
- Linkedin – >420 followers
- YouTube – >161 subscribers
- 2nd Friday of October every year
- An established activity in the annual calendar
- An average of >2 million twitter impressions
- Activities undertaken around the world – >50 countries
- Toolkit shared via the website
ehospice – International Children’s Edition
- Articles published each week and shared within the ehospice weekly newsletter
- Articles published from around the world
- >50% returning visitors
- Averages >3,500 visits every month
- Visitors from x number of countries
- Sharing information, news and resources
- Some materials available in a range of languages and expanding this gradually
- Monthly newsletter sent out to all ICPCN members
- Other news sent out as appropriate
- Average percentage of opens is 30%
Our membership is increasing weekly and it is great to see the network continuing to expand. As of September 2022 we had:
- >4,380 individual members
- >430 organisational members
- >140 countries represented by members
- >190 countries reached through our activities
We hope that the impact of our advocacy will be to increase access to children’s palliative care for all children and their families who need it, regardless of where they live, what condition they have, how old they are, how much money they have, their gender, race or religion.
Since ICPCN started we have been mapping the provision of children’s palliative care services – these maps show the development of children’s palliative care since 2005.
By 2019 there had been an increase in the development of children’s palliative care globally. Whilst not all of this increase can be attributed to ICPCN, ICPCN has played a key part in its development. Whilst we are delighted to see the changes, we are aware that there is still a way to go in order to ‘turn the map dark green’ i.e. where every child and their family, regardless of where they live, can access palliative care if they need it. We plan to update the map in the near future.
ICPCN is the Global Voice of CPC
- Recognised by the WHO, with a MoU in place, and working towards official relations. ICPCN attends the quarterly meetings with WHO head office and regional officers with regards to palliative care.
- Work with the WHO as an advisor for CPC including being part of the technical advisory group, developing WHO handbooks, training materials, being part of the Global Initiative of Childhood Cancer (GICC), participating in Guidelines Development and generally supporting CPC development.
- ICPCN has developed links with a range of international and regional organisations, working to ensure that children’s palliative care is included as part of health care, Universal Health Coverage and Primary Health Care.
- ICPCN was a co-author on the Lancet Commission report on Alleviating the Access Abyss the palliative care and pain relief, and is part of the post commission group, and working with the team on the ongoing development of methods to identify the need for Serious Health-related Suffering and therefore palliative care in children
- ICPCN is often called upon to comment on stories in the media with regards to children’s palliative care, and is able to connect journalists with key people around the world e.g. a recent article in the Guardian on pain-relief shortage in poorer countries ‘due to stigma of US opioids crisis’
- ICPCN is part of a range of networks with whom we advocate for the inclusion of children’s palliative care e.g. Non-communicable Diseases, the Global Initiative for Childhood Cancer, the International Association for the Study of Pain, the Rare Diseases Association, the International Society of Paediatric Oncology (SIOP), Childhood Cancer International etc.
- ICPCN works in collaboration with the global palliative care organisations i.e.: WHPCA, IAHPC, PallCHASE; the regional palliative care organisations i.e.: APCA, EAPC, ALCP, APHN; and national organisations in undertaking advocacy messages and campaigns e.g. working to increase access to essential medicines for children’s palliative care.
- ICPCN’s Youth Ambassador Lucy Watts has been involved in advocating or children’s palliative care with the Director General of the WHO, and other key individuals and organisations.
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. ICPCN also has a role. ICPCN works in several different including: driving and initiating research, collaborating on research, supporting research and disseminating research.
A) Research that has been driven and initiated by ICPCN includes:
- Developing children’s palliative care in Africa through beacon centres: lessons learnt. (Published 2013) This was some work led by ICPCN and funded by the Diana Princess of Wales Memorial Fund to develop paediatric palliative care centres of excellence in Uganda, Tanzania and South Africa.
- How Can We Improve Pain Control in Children Over the World? Results of International Multiprofessional ICPCN Survey. (Published 2014). This was some work led by Dr N Savva who was a member of the ICPCN scientific committee and she collaborated with other members of the committee on this work.
- Assessment of the need for palliative care for children in South Africa, Kenya and Zimbabwe. (Report Published 2013, Paper Published 2014) This work was led by ICPCN in collaboration with UNICEF and looked at undertaking a needs assessment and gap analysis for children’s palliative care in three countries, and was the start of the international work to identify need for CPC.
- Priorities for global research into children’s palliative care: results of an International Delphi Study. (Published 2015). ICPCN led this research study to identify the global priorities for research into children’s palliative care. It was undertaken on behalf of the scientific committee.
- Estimating the global need for palliative care for children: A cross-sectional analysis. (Published 2017) This study further developed the methodology use to assess the need in South Africa, Kenya and Zimbabwe, looking at the global need and is an important paper in the development of paediatric palliative care.
- Editorial: To research or not to research – An important question in paediatric palliative care (Published 2016) Whilst not a specific study, this editorial was written on the back of the work being undertaken through ICPCN.
- Increasing access to children’s palliative care education through e-learning: a review of the ICPCN experience. (Published 2018) This was an evaluation of ICPCN’s e-learning training programme and was led by the education team.
- Children’s understanding of during and death: A multinational grounded theory study. (Published 2023) This was a study that was conceived at the APCA conference research workshop in Namibia, and has been undertaken in collaboration with a range of organisations including the University of Washington, Akron Children’s Hospital, Kent State University, Makerere/Mulago Palliative Care Unit, Saint Semien Pediatric Hospital, and Northeast Ohio Medical University. It involved a wide range of individuals across three countries and we acknowledge all of their work and are delighted to see this come to publication.
B) Research that ICPCN has collaborated on and supported includes:
- The status of paediatric palliative care in sub-Saharan Africa – An Appraisal (Published 2010) This study was led by Dr Richard Harding from Kings College London and ICPCN were part of the project advisory group for this study. It was funded by the Diana Princess of Wales Memorial Fund
- Paediatric palliative care provision around the world: A systematic review. (Published 2011) This study was led by Caprice Knapp a member of the ICPCN Scientific committee and she collaborated with other members of the committee on this systematic review looking at the progress of paediatric palliative care around the world.
- Development of a palliative care outcome measure for children in sub-Saharan Africa: findings from early phase instrument development. (Published 2012) This was the start of the development of a palliative care outcome measure for children. The lack of such an outcome tool had been identified in earlier work looking at paediatric palliative care across sub-Saharan Africa. The work was led by Prof Julia Downing when she working at the African Palliative Care Association, and conducted in conjunction with colleagues from across sub-Saharan including ICPCN.
- EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. (Published 2015) ICPCN were part of the task force of the EAPC looking at outcome measurement and were part of the team that developed this White Paper.
- The EAPC White Paper on core competencies for education in paediatric palliative care. European Journal of Palliative Care. (Published 2014) ICPCN were part of the paediatric palliative care task force looking at core competencies for paediatric palliative care and led the development of this white paper.
- Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. (Published 2017) ICPCN were a co-author on this important study looking at palliative care and pain relief and were able to bring the voice of children and their families into the report.
- Development and pilot evaluation of a home-based palliative care training and support package for young children in southern Africa. (Published 2016) ICPCN were part of this project that involved the development and pilot evaluation of a training and support package for home and community-based workers in South Africa.
- ICPCN collaborated with Edge Hill University on this study in the UK looking at the need of young adults with life-limiting conditions in the UK
- Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. (Published 2018).
- The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review. (Published 2019)
- Impact of educational training in improving skills, practice, attitudes and knowledge of healthcare workers in pediatric palliative care: Children’s palliative care project in the Indian State of Maharashtra. (Published 2018)This was a review of the education and training component of the children’s palliative care project which had been initiated in October 2010 in India with support from ICPCN.
- ICPCN helped to supervise Dr Eve Namissango on her PhD at King’s College London which continued to develop the children’s palliative outcome scale. Papers published from this work include:
- Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. (Published 2019)
- Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study. (Published 2020)
- Face and content validity, acceptability, feasibility and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries (Published 2022)
- Redefining Palliative Care – a New Consensus-based Definition. (Published 2020) ICPCN were part of a study led by the International Association of Hospice and Palliative Care looking at redefining palliative care.
- Mapping paediatric palliative care development in the WHO European region: Children living in low-middle income countries are less likely to access it. (Published 2020) ICPCN were part of the team that looked at mapping paediatric palliative care development in Europe led by the University of Navarra
- Face and content validity, acceptability and feasibility of the adapted version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study, (Published 2021) ICPCN supported the team working on this study who were assessing the face and content validity, acceptability and feasibility of a French version of the children’s palliative outcome scale.
- ICPCN are helping to supervise Karen Carr on her PhD at Ulster University where she was looking at Advanced Care Planning in children’s palliative care. Papers published from this work include:
- Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review. (Published 2021)
- Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study. (Published 2022)
- Initiation of Paediatric Advance Care Planning: Cross Sectional Survey of Health professionals reported behaviour. (Published 2022)
- ICPCN are helping to supervise Lucy Coombes on her PhD at King’s College London and she is developing a children’s palliative outcome scale for the UK. Papers published from this work include:
- ICPCN are part of a Horizon2020 study “MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems”. Papers published from this work include:
- Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic. (Published 2021) ICPCN collaborated with St. Jude’s on this study exploring understanding of the professional and personal experiences of PPC providers globally during COVID-19.
- A qualitative study to inform the adaptation of communication frameworks for use in South Africa and Uganda around communicating with children about life-threatening conditions. (Published 2023). ICPCN collaborated with a team from the University of Oxford, along with colleagues in South Africa and Uganda, to adapt their communication frameworks for use in sub Saharan Africa.
A key part of ICPCNs role is the dissemination of research and information on children’s palliative care. ICPCN is often invited to give keynote or plenary presentations at a wide range of conferences and also submit abstracts for presentations.
Education and training of health care workers is fundamental for children and families in need to access high quality Children’s Palliative Care (CPC) services across the globe. Recent travel restrictions, imposed by the global pandemic, has necessitated a shift from face-to-face education to virtual learning with a range of opportunities to develop online CPC expertise becoming more readily accessible.
In 2021, ICPCN proudly celebrated 10 years of online learning with nine short courses addressing a range of CPC topics currently available in 14 languages. All courses are endorsed by the University of South Wales and freely available on the ICPCN e-learning platform. For more information please click here.
Continuous and consistent efforts by stakeholders to foster and support CPC educational opportunities beyond the immediate challenge of a global pandemic must be encouraged. There is a growing and pressing need for the ICPCN’s virtual learning environment to expand and to create high quality course content that may be adapted to meet both global and local needs and through improvements in technology, opportunities have arisen to deliver these materials in engaging and more interactive ways.
- >1,400 participants
- >30 countries
- 6 courses
- >8,600 participants
- 191 countries
- 10 courses
- 13 languages
- >2,800 attendees
- >110 countries
- 16 webinars
- 23.5 hours of training
Other virtual training
- >2,500 participants
- Global webinars
- Virtual training programmes
- Virtual workshops
Evaluation of education programmes
- An evaluation of ICPCN’s education programme was conducted during 2021 with participants who had enrolled in face-to-face and or e-learning training programmes over a period of 10 years (2011 till 2021).
- The aim of this evaluation was to assess the impact of ICPCN’s face-to-face and online courses and to shape future improvements in both course content and presentation.
- 5,165 evaluations were distributed, and 613 (11.85%) responses were obtained via Survey Monkey.
- Top respondents were from the age groups 35 to 44 years (33.95%), 45 to 54 years (24.8%) and 25 to 34 years (20,2%).
- The evaluation showed considerable knowledge gain in CPC among 91% of respondents, skills gain at 88%, positive change in attitude 86%, and improvement in clinical practice at 84%.
- The main outcome of both the online and face to face education initiatives was a positive impact in terms of developing further support services in children’s palliative care.
More information about the evaluation can be found here.
“I heard someone from ICPCN teaching on children’s palliative care and I felt inspired and I am now a leader in the field in my country.”
“I undertook ICPCN’s e-learning course and this got me interested in children’s palliative care. I am now undertaking the Masters programme at Cardiff University – all because I did ICPCN’s programme.”
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. This is a cross-cutting issue and an essential component of ICPCNs work.
A few examples of where we have supported the development of children’s palliative care are as follows:
Supporting the work of the Children’s Palliative Care Foundation in Hong Kong in 2018 and subsequently as part of the Governing Committee of the Foundation.
Supporting the work of Rachel House in Indonesia as they develop children’s palliative care services in Jakarta.
Supporting the development of CPC in Kenya.
Supporting the development of CPC in Palestine.
Supporting children’s palliative care development at Tawam Hospital, UAE.
Supporting the team on the development of a children’s hospice in Bologna, Italy.
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