updated: 31 March 2010
Palliative Care in Children – an EAPC Task Force
Paediatric Palliative Care
“Regardless of their age, children suffer all the clinical, psychological, ethical and spiritual aspects of incurable illness and death. However, they are not small adults; they have specific developmental, psychological, social and clinical needs that must be addressed.” Vittorio Ventafridda.
As medical and technological advances reduce child mortality and improve the survival rates of children with severe and potentially lethal pathologies, the need to integrate effective and efficient child-specific palliative care into national health and social service policy in European countries is imperative.
The recognition and diffusion of dedicated palliative care in the paediatric age is still at an early stage and the services currently available for children with incurable conditions and their families are fragmented and inconsistent. This situation is attributable to organizational, cultural and economical barriers, which, although multiple and complex, are common and consistent across most countries.
Steering Group and Taskforces
The purpose of the Palliative Care in Children Steering Group is to develop concrete proposals for the improvement and reorganization of existing Palliative Care practices for infants, children and adolescents, regardless of age, type of pathology, cultural, social and economic background.
The original Steering Group for Palliative Care in Children, established in June 2006 by the Fondazione Maruzza Lefebvre D’Ovidio and acknowledged by the EAPC as the Taskforce for Palliative Care in Children produced two publications: IMPaCCT Charter and Palliative Care in Infants, Children and Young People : The Facts. To download this documents in other languages click here.
In 2009 the group was broadened to encompass members from a wider geographical and professional scope, they have recently identified two main focus areas for their activities:
- Education: the formulation of standardized curricula for PPC healthcare professionals in Europe.
- Mapping: the map of palliative care services for children and adolescents in Europe.
Contact
If you have any questions or suggestions regarding the Task Force please contact the Taskforce Secretary at www.maruzza.org
Current Steering Group Members:
Franca Benini MD, Consultant in Paediatric Pain and Palliative Care, University of Padua, Italy.
Eva Bergsträsser MD, Consultant in Oncology, Head of Paediatric Palliative Care, University Children’s Hospital, Zürich, Switzerland.
Finella Craig MD, Consultant in Paediatric Palliative Care, Great Ormond Street Hospital for Children, London, UK.
Wlima Henkel Vodafone Foundation Institute of Children’s Pain Therapy and Paediatric Palliative Care, Datteln
Ulrika Kreicbergs RN, PhD, Senior Researcher, Department of Women and Child Health, Karolinska Institute, Stockholm, Sweden & The Phyllis F. Cantor Center Dana Farber Cancer Institute, Boston, USA.
Dalton Leong, Chief Executive, Shooting Star Children’s Hospice, Middlesex, U.K.
Julie Ling, Nurse Advisor in Palliative Care, Nursing Policy Division of the Department of Health and Children, Dublin, Ireland.
Joan Marston, Chair of the International Children’s Palliative Care Network (ICPN), Paediatric Portfolio Manager, Hospice Palliative Care Association of South Africa.
Ricardo Martino Alba MD, Pediatric Consultant, Department of Pediatric Palliative Care, Baby Jesus Children’s University Hospital, Madrid, Spain.
Marcello Orzalesi (Chair) MD, PhD, Paediatrician-Neonatologist, Scientific Committee Coordinator, Fondazione Maruzza Lefebvre D’Ovidio Onlus, Rome, Italy.
Chantal Wood MD,Consultant in Paediatric Pain and Palliative Care, Hôpital Robert Debré, Paris, France EAPC Board Member.
Original Steering Group
Franca Benini M.D (Co-chair)
Consultant in Paediatric Pain and Palliative Care
Department of Pediatrics, University of Padua - Padua - Italy
Huda Abu-Saad Huijer RN, PhD, FEANS (Co-chair)
Professor of Nursing Science
Director School of Nursing, American University of Beirut - Beirut - Lebanon
Finella Craig M.D.
Consultant in Paediatric Palliative Care
Great Ormond Street Hospital for Children NHS - London U.K.
Leora Kuttner Ph.D. (Reg. Psyc)
Clinical Psychologist & Clinical Professor of Pediatrics.
B.C. Children’s Hospital & University of British Columbia -Vancouver, BC - Canada
Chantal Wood M.D.
Consultant in Paediatric Pain and Palliative Care Pain Unit
Hôpital Robert Debré - Paris - France
Paolo Cornaglia Feraris M.D.
Scientific Director of the Maruzza Lefebvre D’Ovidio Foundation - Rome - Italy
Boris Zernikow, MD, PhD
Director of the Vodafone Foundation Institute of Children’s Pain Therapy and Pediatric Palliative Care, Children`s Hospital Datteln, Witten /Herdecke University - Datteln - Germany
|
