Author: Alex Daniels – Education Officer – International Children’s Palliative Care Network (ICPCN)
Despite unprecedented challenges brought about by COVID-19, the pandemic has necessitated innovations for role-players working on the global palliative care stage. As a result of restrictions on travel, alternative means of communication aimed at disseminating information have needed to be explored.
One such initiative is the Global Palliative Care and COVID-19 series – developed by the International Palliative Children’s Palliative Care Network (ICPCN), Worldwide Hospice and Palliative Care Alliance (WHPCA), International Association for Hospice and Palliative Care (IAHPC) and Palliative Care in Humanitarian Aid Situations and Emergencies (PallCHASE). This collaborative project saw 124 experts from 27 countries contribute to a series of webinars and accompanying Briefing Notes that provide globally relevant palliative care information and guidance within the context of the COVID -19 pandemic.
In April 2020, Springer published the first International Case-Based Manual on Children’s Palliative Care edited by ICPCN’s Chief Executive, Prof Julia Downing. The manual draws on case histories from around the world that reflect key issues and elements of CPC. It provides a practical approach by addressing multidisciplinary care in the management of children and their families, discussing cases from an international perspective, and sharing examples from a variety of countries. A set of monthly webinars, to be developed in collaboration with contributors to the book, are planned for the third Thursday of every month and set to commence in September 2021. Please look out for more details about these webinars.
Education of health care professionals needs to be at the heart of our response to make palliative care services accessible to more than 21 million children and their families who need palliative care globally.
A strategic area of focus for ICPCN is to equip health care professionals and others with skills and knowledge so they may care for and support children living with life-threatening and life-limiting conditions and their families wherever they may be. While it has been difficult to provide face-to-face training due to the COVID-19 pandemic, this year marks an important step for the education programme. The ICPCN’s e-learning platform celebrates 10 years of existence and while there remains much more work to be done to maximise its potential; considerable progress has already been made. Over 5,300 individuals from > 140 countries
have enrolled on the site and nine short courses that address a variety of CPC topics are freely available. Courses are available in a range of languages including English, Spanish, Portuguese, Czech, French, Serbian, Mandarin, Dutch, Russian and the Introduction to Palliative Care in Children course has recently been translated to Vietnamese, Farsi, Malay, Bengali and German. All courses are endorsed by the University of South Wales. For more information about the e-learning site, please log onto www.elearnicpcn.org
Recently an evaluation was undertaken of the ICPCN’s face-to-face and online training programmes. This covered training that had been conducted over the past 10 years. Respondents from 109 countries participated. Most were from Europe (40%), Sub -Saharan Africa (21 %) and Asia (17 %). In relation to the e-learning courses, 90% of respondents found information in the course clear and understandable, 84% found the course useful in their practice and 88% rated the course highly. In relation to face-to-face training courses, respondents requested:
- longer training periods
- more frequent training
- clinical scenarios to apply theoretical principles
- more time allocated to clinical placements in hospitals
- screening of attendees to create opportunities for more colleagues to attend and
- developing the training in different languages to increase accessibility and diversityThank you to everyone who took time to complete the evaluation – we have learnt a tremendous amount from your feedback. Please look out for more information on the findings coming soon.
We are delighted to announce that through collaboration with Alex Mancini, National Lead Nurse for Neonatal Palliative Care in the UK, and in partnership with The True Colours Trust, an exciting new opportunity to further expand online resources in Neonatal Palliative Care has arisen. We are soon to commence work on the Enhanced Neonatal Palliative Care course to be developed for the ICPCN e-learning site, aligned to the National Neonatal Palliative Care Project that includes a virtual training programme in the UK. In addition, in collaboration with Alex Mancini, the existing e-learning course on Perinatal Palliative Care, originally developed in 2015, has been reviewed. The newly upgraded course flags self-awareness and self-care as pivotal to effective communication and practice, explores key principles and philosophies in an acute critical setting and emphasises robust collaboration across local settings to ensure individualised continuum of care for babies and families. Please look out for the transformed course renamed ‘Neonatal Palliative Care – An Introduction’, coming soon.
Another collaboration includes converting the WHO’s newly released “Guide for Integrating Palliative Care and Symptom Relief into Paediatrics” to an online course for the ICPCN e-learning platform. This project is made possible through collaboration with the WHO and other stakeholders, including St Jude’s Global.
Partnerships with organisations play a crucial role to the successful integration of CPC educational resources in various settings. Some well-established collaborations, like the one with our Dutch partner, Kenniscentrum Kinderpalliatief Zorg, continue to expand with the addition of a fourth CPC course in Dutch. For more information, please see: https://www.kinderpalliatief.nl/nieuws/nieuwe-e-learning-module-verlies-en-rouw-in-kinderpalliatieve-zorg
Our ongoing collaboration with Bundesverband Kinderhospiz has resulted in the translation of the first German e-learning course and we look forward to developing additional resources together and to strengthening the partnership. Other partnerships are newer, like the one with a group of experts from the French Paediatric Palliative Care Society along with colleagues from other French speaking countries. This exciting collaboration holds the promise of expanding the CPC educational resources to Francophone countries.
Much of the success of the e-learning platform may be attributed to ongoing support and partnership with many individuals and organisations. We are grateful to a committed group of CPC experts who continue to provide invaluable help with grading of assignments, translations and contribute to course development, despite often pressured clinical and personal commitments. On a practical note, another crucial and more recent collaboration is with our e-learning Moodle site host and technical support team. Thank you to the team at iLite for always being ready to respond to our technical woes and for ensuring all runs smoothly behind the scenes.
This is an important time for ICPCN as opportunities arise to not only refine and enhance existing educational material, through latest developments in technology, but also to develop new high-quality resources to address existing gaps in CPC education. However, these opportunities can only be optimised through cultivating and nurturing partnerships and collaborations with individuals and organisations committed to sharing expertise, skills, and knowledge. If we want to address the overwhelming need to meet the palliative care needs of all children and their families, regardless of their setting, individuals and organisations on the local and global stage must work together – collaboration is key!
 Downing and Ling, 2012; Connor et al, 2017; Marston et al, 2018.