Neonatal Palliative Care for Nurses

About the Author

Alexandra Mancini (Smith) is a neonatal nurse with over 25 years experience and is the Pan London Lead Nurse for Neonatal Palliative Care, the first regional post of its kind. This is a unique post focusing on developing the training and education of staff across the London region and the development of a neonatal palliative care service. Prior to this, Alex was the Neonatal Matron at Chelsea and Westminster Hospital including providing practical and emotional support for families and staff, and has been instrumental in developing local and national guidelines, including robust complex and palliative care pathways. Alex is lead author for the UK national document 'Practical guidance for the management of palliative care on neonatal units' published in 2014. Alex has published widely, including co-authoring book chapters and presents frequently both nationally and internationally. She has held posts as an invited expert member of the Riverside ResearchEthics Committee, Clinical Ethics & Advisory Group of a Central London Hospital and sits on the ICPCN's (International Children's Palliative Care Network) Expert Advisory Group on Perinatal and Neonatal Palliative Care. Alex is a guest reviewer for British Medical Journal (BMJ) and the Journal of Neonatal Nursing (JNN).For the last ten years, Alex has developed the National Neonatal Palliative and End of Life Care conference in collaboration with Child Bereavement UK (CBUK) and she is a facilitator for CBUK's national educational workshops. In 2016, Alex led the development of an online learning module 'Perinatal Palliative Care' designed for the Royal College of Midwives, this online module is also available on the ICPCN e learning website. Building on her educational work over previous years, Alex is passionate about raising awareness on neonatal palliative care, by educating professionals across the UK and internationally, in a variety of settings, including conferences and is currently strengthening working relationships with local children's hospices. Alex is an invited guest lecturer at several London universities, including Kings College London, Kingston and London South Bank, teaching Neonatal Palliative and End of Life Care on pre and postgraduate courses. Alex gained a MSc in Complex and Palliative Care for Neonates. Professor Jayne Price is a children's nurse whose clinical background is in children's oncology nursing. She was a clinical nurse specialist in children's palliative care, working with children who had advanced cancer and their families. More recently, her experience has encompassed improving care for children with palliative needs (both cancer and non-malignant conditions) and their families, through education and research. Jayne has been instrumental in developing continuing education opportunities for professionals working within the field of children's palliative care, and also in ensuring palliative care is embedded within the undergraduate nursing programme. She has received a number of awards for both education and research in recognition of her work within children's palliative care.With a specific interest in the psychosocial needs of parents living through the loss of a child, Jayne's doctoral study focused on parents' perspectives of caring for an infant/child with a life-limiting condition. It was during that study that she became interested in perinatal/neonatal palliative care and has carried out some post doctoral research and scholarly work focusing on this aspect of palliative care. Having presented and published widely within the field of children's nursing, nurse education and palliative care, Jayne and her colleague Patricia McNeilly edited a book in 2009, titled 'Palliative care for children and families: An interdisciplinary approach', which has recorded sales worldwide. Her most recent editorial work was with Sage in 2018 where she was lead editor in a textbook for children's nursing.Jayne has also been involved in a number of international projects establishing educational initiatives with students to ensure a more global focus for their learning within children's palliative care. More recently has facilitated an innovative interprofessional learning day with 3rd year midwifery students and children's nursing students examining collaborative working within the area of perinatal/neonatal palliative care.. She is a Trustee of Shooting Star Children's Hospices Surrey and is currently Professor of Children's Nursing and Professional Lead for Children's Nursing at Kingston University and St George's University London. Tara Kerr-Elliott is a children's Nurse with extensive experience working within the field of Children's Palliative Care within the community, children's hospice and hospital settings. She is alsoa Well Child Nurse Specialist and Practice Educator within the Louis Dundas Centre for Palliative Care at Great Ormond Street Hospital, London where her role enables her to focus equally on clinical work as well as on teaching and education. More recently, she also became actively involved in research and is committed to driving forward both education and research within Children's Palliative Care.Tara has a particular interest in the psychosocial aspect of Children's Palliative Care, particularly at the end of life. Her specialist area of knowledge and an area she is passionate about furthering research in, is the care of children and the needs of parents and nursing staff after a death. Tara is also passionate about palliative care education and the use of simulation based education to support this. She delivers teaching and presentations locally and nationally. She is also the Nurse Advisor to the "Medicine for Children" advisory group.