ICPCN is the only global umbrella organisation for children’s palliative care (CPC). Our mission is to achieve the best quality of life and care for children and young people with life-threatening or life-limiting conditions, their families, and carers worldwide, by raising awareness of CPC among the public, health professionals, and policymakers; advocating to governments and international organisations for the global development of CPC services; expanding the evidence-base for CPC; and sharing expertise, skills and knowledge with our global network of members.
The ICPCN’s overall strategic goal for education is to provide high-quality CPC education which meets an identified global need and to support and empower the ICPCN network to train from their own localities. ICPCN have been providing both online and face-to-face education and training programs since 2011 and in keeping with the spirit of the above-mentioned goal, an evaluation of the education programme was conducted. An evaluation questionnaire was distributed to participants who had enrolled in face-to-face and or e-learning training programmes over a period of 10 years (2011 – 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.
5165 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 following graph represents the professional background of respondents with the ‘Other’ category including allied health professionals i.e.: occupational therapists, physiotherapists, psychologists as well as drama therapists, music therapists, grief therapists and students.
Most respondents (40%) represented Europe, followed by Sub -Saharan Africa (21.04%) and Asia (16.80%). The following graph represents number of respondents and regions of the world they represent.
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.
It is interesting to observe the disparity between respondents representing Europe, where there are generally relatively well-established CPC services vs the documented overwhelmingly need for CPC in LMICs. However, the training had impacted positively in terms of developing further support within services e.g.: provision of end-of-life care and psychosocial support for children and families which served to broaden the quality of service and overall experience for the child and their family. It is appropriate that communication skills, pain assessment, and management skills, and the development of family-centered approach emerged as key lessons learned – core CPC components. The training had acted as a catalyst for respondents to develop as advocates, researchers, and specialists in this relatively new area of work – this is a positive move and must be encouraged. Barriers to implementing change in CPC included the need to increase awareness and knowledge, shift attitudes of supporting teams including those providing care in the community emphasising the need for education and training in CPC at all levels of health care delivery. Patient and family involvement in care, specific care at the end of life, the lack of resources, support from the government, and financial support were other important issues raised.
There is a need for a marketing strategy that targets LMICs directly. There is also a need to identify accredited CPC organisations where learners may undertake clinical placements globally. In addition, partnerships between better and lesser-resourced CPC centres need to be cultivated, improved, and nurtured. Finally, due consideration should be given to a more consistent and timely response mechanism for review of assignments, standardisation of modules, and making current e-learning courses more interactive.