The Private Worlds of Dying Children

I am currently the True Colours Chair in Palliative Care for Children and Young People and Director of the Louis Dundas Centre for Children’s palliative are at the UCL Great Ormond Street Institute of Child Health. I came to UCL from Rutgers University where I remain Board of Governors Professor of Anthropology Emerita. I am an honorary fellow of the Royal College of Paediatrics and Child Health. While at Rutgers University I founded the Center for Children and Childhood Studies and was the founding editor of the Rutgers University Press Book Series in Childhood Studies (2000-2016). Trained as an anthropologist I have spent my career studying chronically and terminally ill children and young people and their families using ethnographic methods and an interactionist approach. Throughout my career I have striven to conduct research which translates into practice and so improves the lives of seriously ill children, young people and their families. My work has been used in clinical guidance by the American Academy of Pediatrics and the American Thoracic Society. I have contributed to the formation of national policy in the US, testifying before the Congress on funeral practices and advising the Roslayn Carter National Care Giving Initiative. In the UK I have worked to build research capacity in paediatric palliative care and to raise the profile of paediatric palliative care amongst policy makers. Pursuant to that I have worked closely with Together for Short Lives and for the last ten years have chaired the Together for Short Lives and Association for Paediatric Palliative Medicine the joint research committee. Work of the joint committee and the Louis Dundas Centre has been cited in various reports and policy statements including those of Royal College of Paediatrics and Child Health, Nuffield Trust and N.I.C.E.