A new virtual course: Neonatal Palliative Care: An Enhanced Course

The International Children’s Palliative Care Network releases today its newest e-learning course entitled, Neonatal Palliative Care: An Enhanced Course.

The course has been developed in partnership with Alex Mancini-Smith, National Lead Nurse for Neonatal Palliative Care, who leads the National Neonatal Palliative Care Project in the UK.  Alex is the Lead Editor of the textbook Neonatal Palliative Care for Nurses published by Springer 2020 on which this course is based. The course is designed to enhance knowledge of, and confidence in, neonatal palliative care for health professionals and support workers who are involved in the delivery of care to infants and their families. 

“I’m delighted to see the launch of these E-learning modules which have been developed by nurses for nurses.  I hope that it will provide an engaging way to share the content from the book ‘Neonatal Palliative Care for Nurses’ and the National Neonatal Palliative Care Project  https://www.truecolourstrust.org.uk/national-lead-nurse-in-neonatal-palliative-care that I have been leading across the UK.  It will, I hope, bring to life the experiences of families and of nurses caring for seriously ill babies and supporting their families.  The e-learning is based on the UK context, but will have international resonance and it’s been great to work in partnership with ICPCN to bring this resource to a global audience.”

Alex Mancini, National Lead Nurse for Neonatal Palliative Care, UK

In 2021, approximately 2.3 million babies died in the first month of life globally, this translates to 6,400 babies dying every day. These deaths constituted nearly 47% of deaths among children under five. The first 28 days of life remain the most vulnerable period for a child’s survival and location matters.  A baby born in sub-Saharan Africa is 11 times more likely to die in the first month of life than a child born in Australia or New Zealand. In addition, the devastating impact of conflict and humanitarian emergencies, including the COVID-19 Pandemic, on children living in 37 countries classified as fragile and conflict affected regions with U5 mortality triple the rate in other countries[i].

Neonatal palliative care is described as holistic, multi-disciplinary care for babies and their families following antenatal or postnatal diagnosis of life-limiting conditions. Neonatal palliative care, as an emerging area of specialty, sets out to integrate ongoing support through pregnancy, delivery, postnatal care, and where appropriate, continuing bereavement care.[i]  ‘It improves the experience and outcomes for families during a time of crisis, specifically when their baby is not expected to survive, or when a baby has multiple complex health needs with an uncertain future’[ii].

The course is freely available on ICPCN’s ’s e-learning platform: www.elearnicpcn.org

The online course is presented in 7 Sections and the Learning Units in each section align with the chapters in the book.

  • Section 1: Introducing core concepts in Neonatal Palliative Care
  • Section 2: Working collaboratively to provide high-quality care for babies & their families
  • Section 3: Genetics, Antenatal Care and Multiple Births
  • Section 4: Providing Holistic Care and Support
  • Section 5: Decision-making and Advanced Care Planning within Legal and Ethical Frameworks
  • Section 6: Care after death, Postmortem and Neonatal Organ and Tissue Donation
  • Section 7: Achieving Quality in Neonatal Palliative Care Internationally

A navigation video guides the learner from the Moodle cover page to and through the Learning Units. Key learning points are outlined at the beginning of each Learning Unit followed by a breakdown of what to expect in each Learning Unit. All Learning Units have been developed in Articulate Rise 360, a web-based app that hopes to encourage the learner to actively engage with a wealth of resources and stimulating course content. Colourful imagery, innovative designs and simple instruction prompts have been integrated throughout the course and a range of case studies, podcasts, videos and opportunities to engage in reflective activities have been included to help enhance and consolidate the learning experience. Several opportunities to hear the perspectives of parents and health care professionals have been included.

There is a short multiple-choice assessment attached to most Learning Units and upon successful completion of these assessments, a certificate of completion will be issued.

By the end of this course, the participant will have:

  • Increased insight into positive cultures and patterns of communication when delivering “unexpected or difficult” news in a neonatal palliative care context.
  • Increased awareness and understanding of professional roles and responsibilities in a multi-disciplinary (or inter-professional) team delivering neonatal palliative and end of life care.
  • Increased understanding of key principles, legal and practical requirements related to the care of a baby’s body after death.
  • Increased understanding of assessment, planning and implementation of complex symptom management encountered in neonatal palliative and end of life care.
  • Increased awareness and understanding of individual and professional roles, in self-care and supporting others to manage reactions to complex and or multiple interacting issues in a neonatal palliative care context.

Thank you to all the contributory authors and editors of the book, Prof Jayne Price, Tara Kerr- Elliott and Alex Mancini for supporting and contributing to the e-learning course.

Special thanks to The True Colours Trust,  for supporting the development of this course. This project forms part of a wider project funded by The True Colours Trust to support the development of  Neonatal  Palliative Care in the UK and globally.

We hope that this comprehensive course will serve to inspire and empower health care professionals and support workers globally in their efforts to improve the quality of life (and death, if appropriate) of babies and families in their time of crisis.

[i] https://www.elearnicpcn.org/course/view.php?id=91

[ii] https://www.cwplus.org.uk/neonatal-palliative-care/

[i] Levels & Trends in Child Mortality Report 2022 -Estimates developed by the United Nations Inter-agency Group for Child Mortality Estimation