Children face the greatest risk of death in the neonatal period (the first 28 days of life). During this period 2.4 million children died across the globe in 2019.
Approximately 6 700 newborn deaths occur everyday accounting for 47% of all U5 child deaths globally, an increase from 40% in 1990. There is a significant, unevenly distributed, burden of neonatal mortality across regions with countries from Sub-Saharan Africa, Central and South Asia accounting for nearly 80% of global neonatal deaths in 2019. Across countries, neonatal mortality rates range from 1 to 42 deaths per 1,000 live births, and the risk of a newborn dying in the first month of life is about 49 times higher in the highest-mortality country than in the lowest mortality country. Neonatal and infant deaths remain a serious concern with deaths occurring mostly because of prematurity, infection, asphyxia, or congenital anomaly. To address this challenge, it is essential that health professionals are skilled and equipped so they may respond with sensitivity and expertise to families who face this unimaginable situation.
Neonatal Palliative Care (NPC) is ‘holistic, multi-disciplinary care for babies and their families following antenatal or postnatal diagnosis of life-limiting conditions, providing integrated ongoing support through pregnancy, delivery, postnatal care, and where appropriate, continuing bereavement care.’ Once an infant has been identified as having palliative care needs, the integration of an NPC approach plays a pivotal role in ensuring that the experience for the baby and parents can be as meaningful as possible.
ICPCN launched an online Perinatal Palliative Care (PPC) course offering an introduction to the field in 2015. The course aimed at enhancing knowledge and confidence in PPC for all health professionals working with neonates, infants & their families. Over the last few years this area of specialty has developed considerably, leading to the original course being revised and upgraded. The new course, renamed Neonatal Palliative Care: An Introduction, was relaunched this month. The course is aimed at all those caring for babies and their families working across maternity services, neonatal, children services and children’s palliative care and is appropriate for any discipline e.g. nurses, midwives, doctors, clinical officers, independent practitioners, allied health professionals , support workers, counsellors, social workers, teachers, spiritual leaders, volunteers, etc. Learning outcomes, reflect the recent UK guidance , and include increasing awareness and understanding of self-care and the care of colleagues, developing an improved understanding of key principles in NPC and how to apply these principles and philosophy of care in an acute critical setting.
The course has been developed by Alex Mancini-Smith, a senior neonatal nurse with extensive experience and the National Lead Nurse for Neonatal Palliative Care, leading the National Neonatal Palliative Care Project in the UK. Alex is Lead Editor for Neonatal Palliative Care for Nurses, published by Springer in 2020, and the new course is aligned with this textbook. The course is presented in 5 modules: An introduction to NPC; Communication and Spirituality; Antenatal perspectives and the care of the mother; Caring for the baby and their family after death; and Caring for yourself and your colleagues. Throughout the course there are a range of case scenarios, reflective activities, video presentations and opportunities for the learner to hear parents’ perspectives. Self-care emerged as a priority and is consistently raised throughout. Other key messages include the importance of communication and spirituality, and providing families with information, choices and time. At the end of each module there is a short list of multiple-choice questions. Upon successful completion of all 5 sets of questions, a certificate of completion will be issued.
This newly upgraded course, and a series of other short courses on a range of Children’s Palliative Care topics , is freely available on the ICPCN site. Courses are available in several languages and all courses are endorsed by the University of South Wales. For more information, please log in to www.elearnicpcn.org
The course on Neonatal Palliative Care: An Introduction, is currently only available in English though there are plans to translate this course to other languages. If you are keen to volunteer your services to translate this important content, please mail firstname.lastname@example.org
The work forms part of a larger project funded by The True Colours Trust to develop online training resources in NPC and work has commenced on a follow up to this course. Please look out for an Enhanced course on NPC, which is to be developed to align with the new NPC textbook.
Education Officer, ICPCN