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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 childhood mortality and improve survival for children with life-limiting conditions, there is a need to integrate effective and efficient child-specific palliative care into national health and social service policy throughout Europe.

Children’s palliative care is a small and highly specialised field of healthcare which is at an early stage in its development. Across Europe the provision of palliative care services for children with life-limiting conditions and their families vary. Where provided, services are often fragmented and do not meet the needs of the child and family. This is attributable to a number of issues including organizational, cultural and economical barriers, which, although multiple and complex, are common and consistent throughout most of the European countries.

The EAPC steering committee on palliative care in children

The need to integrate effective and efficient child-specific palliative care into national health and social service policy in European countries is imperative. Across Europe services currently available for children with life-limiting conditions and their families are limited and vary considerably. This situation is attributable to organizational, cultural and economical barriers, which, although multiple and complex, are common and consistent across all European countries.

In 2006 a “EAPC Taskforce on Palliative Care in Children” was established by the EAPC and the  Fondazione Maruzza Lefebvre D’Ovidio  (FMLDO)  to provide international palliative care professionals with the opportunity to influence and affect change in the provision of palliative care services for children with life-limiting and life-threatening illnesses and their families throughout Europe and beyond.

The Taskforce produced two publications:

In order to better achieve its goals, in 2008 the EAPC Taskforce on Palliative Care in Children established a “Steering Committee on Palliative Care in Children ”, expanding the number of experts involved. This Steering Committee was recognized by the EAPC and the FMLDO through a Memorandum of Understanding signed the 3rd of October 2010.

In 2009 the group has identified two main focus areas for their activities:

Aims and Objectives

The Committee will lead on developments in palliative care for children through partnership and collaboration with other organizations throughout Europe.

The primary objective of the Committee is to influence and improve services for children with life-limiting and life-threatening conditions and their families, including the collaboration with other groups throughout Europe who are involved in pediatric palliative care.

In order to fulfill its objectives, the Steering Committee may establish subcommittees to work on specific projects related to the Steering Committee’s mandate. Subcommittees will consist of a minimum of 4 and a maximum of 10 members, including a Chair and a Co-chair selected from the Steering Committee and a Project Sponsor indicated by the Maruzza Lefebvre D’Ovidio Foundation (FMLDO).

The subcommittees / projects will be submitted to the EAPC Board for approval as EAPC Taskforces.

Members

The members of the Steering Committee are nominated by the EAPC Board and the FMLDO from a selection of recognized experts with specialist skills and knowledge in pediatric palliative care, representative of a range of European countries. Leaders of new projects may be invited to join the Committee. 

The Steering Committee shall consist of no fewer than 10 and no more than 20 designated individuals.  The Steering Committee shall consist of a Chair, appointed by the Steering Committee, and two ex officio Delegates, one appointed by the FMLDO and one by the EAPC.

Membership of the Steering Committee is voluntary and uncompensated. The Steering Committee members must declare any potential conflict of interest that may arise during their mandate as a member of the Committee.

Secretarial support will be provided by the FMLDO. The Secretary will not be a member of the Steering Committee.
The Presidents of the FMLDO and of the EAPC can participate in the meetings of the Steering Committee.

Contact

If you are intereseted to receive future updates about the work of the steering group, you may may register online or login (if you are already a user or member of this web) and  select the specific interest group: Children.

If you have any questions or suggestions regarding the Task Force please click here to  contact the Taskforce Secretary  Suzanne Benett by email

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