Rome 16th – 19th November 2016


From 16th to the 19th of November 2016, the Maruzza Foundation organized the 3rd Congress on Paediatric Palliative Care: a Global Gathering in Rome.

The 3rd Congress was attended by 360 participants from 47 different countries worldwide, welcoming delegates from Western and Eastern Europe, Canada, USA, Central and South America, Australia and New Zealand, Asia, Africa. There were scientific contributions by academics from 37 different countries; there were 18 presentations in plenary by renowned international experts, 48 oral presentations and 112 posters presented by teams from diverse international backgrounds.

The inauguration was held on the afternoon of the 16th November, with the official opening by Franca Benini (Congress Chair), Ross Drake (Co-chair), Anne Goldman (Honorary President) and Silvia Lefebvre D’Ovidio (Maruzza Foundation).

The moderation of the Plenary Sessions was entrusted to distinguished and prominent international experts from the field of Children’s Palliative Care; these included: M. Bernadá, J. Wolfe, M. Bluebond-Langner, M. Orzalesi, C. August, M. Al-Sayer, S. J. Friedrichsdorf and A. Goldman, among others.

The Plenary Sessions addressed key issues linked to the organization, implementation and delivery of Children’s Palliative Care (CPC) such as: The importance of the CPC at home (Saba Jordanishvili), The Significance of Integrated Care (Joanne Wolfe), Children’s Palliative Care Delivery Across The Spectrum of Available Resources (Joan Marston), Symptom Control (Renée McCulloch, Elliot J. Krane and Ross Drake), Managing Distress Across Childhood (Chakrapani Vasudevan, Barbara M. Sourkes and Justin N. Baker), Ensuring Quality Care (Eva Bergsträsser, Mercedes Bernadá and Maria L. Chiozza) Support for the Child, Adolescent and Family (Ulrika Kreicbergs, Barbara L. Jones and Anna Gorchakova), Learning from Conflict and Adversity (Jan Aldridge, Daniel Garros and Danai Papadatou), and the role of Religions in CPC, with the presentation of the “Religions of the World Charter” for Children’s Palliative Care (Richard Hain).

The abundance and quality of the abstracts accepted for presentation permitted the organization of 12 Oral presentation sessions, with 4 presentations regarding common issues and topics that emerged from the submitted abstracts: there were 2 sessions on Parents, Siblings and Family, 2 on vocational training, 2 on epidemiological and statistical research, and 1 each on Neurological Problems, Perinatal – Neonatal Problems, Pain Assessment and Control, Teenagers and young adults, Bereavement and Grief, and CPC Delivery at home or in hospital.

The Congress was preceded by four pre-congress workshops, led by recognized authorities on CPC (Stefan J. Friedrichsdorf (Treating distressing symptoms in children with serious illnesses), Myra Bluebond-Langner (Decision making about care and treatment), Joanne Wolfe (End-of-life care: a taste of the EPEC-paediatrics curriculum) and Julia Downing (Setting up research in children’s palliative care). Over 150 delegates participated in the training initiatives.

The Congress was also marked by two very novel initiatives, which were much appreciated by the participants. The first initiative was two sessions dedicated to “gaining insight” these innovative sessions embraced unusual subjects linked to CPC, these were: Nourishing the Senses (by Massimiliano Alajmo and Defendente Mauro Ferrari) and Music Cares for You (by Paolo Petrocelli).

The second of these initiatives regarded the organization of 7 Networking /Focus Sessions at the end of each day’s work. Every session was coordinated by an Expert Moderator (Discussion Leader), who encouraged the active participation of the attendees in a interactive exchange of experiences devoted to clarifying /developing of the topics covered that day in plenary. More than 300 delegates partook in the afternoon networking sessions.

The Congress ended Saturday, November the 19th with a panel discussion about Leadership of CPC services. Lizzie Chambers and Joan Marston moderated the session, the panel of experts was made up of Margaret Al-Sayer, Justin N. Baker, Ruth Kiman and Mary Ann Muckaden.

During the Congress, the 2016 Ventafridda Award was presented to Joan Marston (South Africa) “On behalf of the many children and their families who have benefited from her invaluable work and in recognition of her outstanding and tireless professional dedication to the development of CPC.

Four Awards for young researchers under 36 years of age were also presented by the No Pain for Chidren Association to the Presenting Authors of scientific papers (oral and poster) considered to be particularly innovative and interesting by an expert commission: the 1st Prize went to Saba Iordanishvili (Georgia); 2nd Prize to Alvaro Navarro-Mingorance (Spain); 3rd Prize ex aequo to Camila Borghi (Brazil) and Chiara Di Pede (Italy).

The Congress was marked by dynamic and interactive exchanges by the delegates, both during the scientific sessions, where numerous projects were discussed, and during the scheduled breaks, particularly interesting was the poster exhibition with 112 Posters on display over the two days of the event. The friendly atmosphere was congenial to networking and the exchange of mutual experiences.

The participant feedback, obtained via an anonymous questionnaire, was very positive and complimentary, indicating overall satisfaction of the congress in general and also great appreciation of the practical input useful for professional practice. The questionnaire also permitted the foundation to collect useful suggestions for the next congress to be held in Rome in 2018.

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