Measuring the impact of an organisation such as ICPCN can be a challenge as our work has a global remit, and much of what we do, we do in collaboration with others. However, it is important for us to look at some of ICPCN’s achievements and celebrate success.
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:
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 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:
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:
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.
23.5 hours of training
Other virtual training
Virtual training programmes
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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