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Appointment
  • True Colours Chair in Palliative Care for Children and Young People
  • Population, Policy & Practice Dept
  • UCL GOS Institute of Child Health
  • Faculty of Pop Health Sciences
Biography

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.

Research Themes
Research Summary

My research has focused broadly on understanding the illness related experiences of seriously ill children, young people, and their families. I have investigated a range of subjects including well and ill children’s awareness and communication about illness and death, children’s acquisition of disease related knowledge and peer relationships (leukaemia), families’ management of everyday day life (cystic fibrosis), siblings of seriously ill children (cystic fibrosis), medical decision making (cancer), and children’s role in informed consent. 

Since coming to the Great Ormond Street Institute of Child Health in September 2010 my research has dealt with issues of importance in paediatric palliative care including: advanced care planning; preference for a child’s place of death; symptom management; decision making; prognostic understanding; parents and children access and participation in research. As in my previous research, several studies have employed long term ethnographic observation (9 months and more) to understand experience from the point of view of the participants-the children and parents across the illness trajectory. The core of these observational studies has been audio recorded conversations and consultations which were subsequently transcribed for analysis with results used in the development of clinical guidance for conduct of consultations. Other studies have paired more conventional methods of psychosocial research in order to uncover participants underlying views. These have included interview studies as well as surveys of clinicians including forced choice, clinical scenarios and free text items to assess understanding and attitudes towards paediatric palliative care leading on to better integration of care and treatment of children with life limiting conditions and life threatening illnesses.

I am currently working with colleagues developing studies addressing: medication error at the end of life in children cared for in the community (e.g. home, hospice); withdrawal of life sustaining treatment, specifically out of hospital extubation; rapid discharge from hospital when child's condition is terminal; decision making and experience in the context of antenatal counselling and intensive care; presentation of self and identity in parents of children with life shortening conditions and life threatening illnesses. 

Teaching Summary

Prior to coming to Great Ormond Street Institute of Child Health I taught a number of undergraduate courses in anthropology and childhood studies including courses in: 
Childhood Studies, Psychological Anthropology, Medical Anthropology, Childhood and Culture, Death and Dying, Childhood, Health and Illness, Field Methods.

Since coming to Great Ormond Street Institute of Child Health I have organised and taught on number of short courses with Great Ormond Street Hospital Palliative Care Team including a five day short course in paediatric palliative care for health care professionals and numerous day long courses at national and international professional meetings and conferences.

This year together with Dr Celine Lewis we will offer a five day course in qualitative methods for post graduate students

PhD SUPERVISION & EXAMINATION (2015-present)

Second Supervisor for Callie Daniels-Howell
Meaning at End-of-life for children with cancer in Kenya and their families. UCL- Department of Anthropology and Institute for Global Health (Start date January 2021) 

Second Supervisor for Dr Katherine Green (MDRes)
Development of a Multi-Factorial Prognostic Model to Optimise Treatment Decision Making and Decision Making in Paediatric Low-Grade Gliomas. UCL-ICH (Start Date February 2021)

Primary Supervisor for Emma Beecham
Quality of Life in Children with High-Risk Brain Tumours: Patient, Parent and Clinician Perspectives Over the Course of the Illness. University College London- Great Ormond Street Institute of Child Health (2016-2021). Upgrade from MPhil to PhD, July 2017. 

Primary Supervisor for Emma Day
Involving Young People with Cancer in Decision Making About Care and Treatment:  Prospective Study to Inform Practice. University College London-Great Ormond Street Institute of Child health (2012-16). Upgrade from MPhil to PhD, March 2014. PhD conferred July 2017.

Primary Supervisor for Johanna Kempe
Researching Young People with Cancer on the Internet: Development of Ethical Guidance and Suggestions for Research Regulation using the Views of RECs and Young People (UCL- ICH) (2014-18). MPhil Dec 2016.

External Examiner for Marie Kofod Svensson
At the heart of living in-between: Paradoxes, (in)visibility, and blurred futures in fin family living with congenital heart defects, University of Copenhagen, Denmark. Passed June 2020 

Appointments
2010 Professor and True Colours Chair in Pal Care for Children Institute of Child Health University College London, United Kingdom
2010 Honorary Contract Palliative Care Service Great Ormond Street Hospital for Children, United Kingdom
2002 Visiting Professor (2002)   UCL Institute of Child Health, United Kingdom
1999 – 2004 Founding Director (September 1999-December 2004) Center for Children and Childhood Studies Rutgers University, United States
1999 Distinguished Professor of Anthropology   Rutgers University, United States
1989 – 1999 Professor (1989-99) Department of Sociology and Anthropology Rutgers University, United States
1989 – 1999 Board of Governors’ Professor of Anthropology Department of Sociology and Anthropology Rutgers University, United States
1978 – 1989 Associate Professor, (1978-89) Department of Sociology and Anthropology Rutgers University, United States
1974 – 1978 Assistant Professor (1974-78) Department of Sociology and Anthropology Rutgers University, United States
1970 – 1974 Teaching Assistant in Anthropology Department of Anthropology University of Illinois, United States
Academic Background
1975   Doctor of Philosophy University of Illinois Urbana/Campaign
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