registration

Room San Bernardino da Siena
Communication with the child and family
Leaders:  Joan Marston & Barbara Sourkes

Room Jacopone da Todi
Team work in paediatric palliative care: challenges and opportunities
Leaders: Myra Bluebond Langner & Danai Papadatou

Coffee Break

Room San Bernardino da Siena
Communication with the child and family
Leaders:  Joan Marston & Barbara Sourkes

Room Jacopone da Todi
Team work in paediatric palliative care: challenges and opportunities
Leaders: Myra Bluebond Langner & Danai Papadatou

Registration

Opening Ceremony

Host for the event: Silvia Lefebvre D’Ovidio

Welcome of the Maruzza Foundation President: Daniel M. L. Cardon de Lichtbuer

Welcome from the Congress Chairs: Franca Benini & Joanne Wolfe

Keynote Lecture: Hope in Pediatric Palliative Care – Chris Feudtner

Award of the No Pain for Children Prizes

Little Stars Project Preview – Mike Hill

Presentation of the Vittorio Ventafridda Award

Keynote Lecture: The History of PPC – What we have learnt – Ann Goldman

Icebreaker – Welcome cocktail and buffet

Registration

Plenary Session: Symptom control

Moderators: Joanne Wolfe & Boris Zernikow

• Neurological symptoms – Julie Hauer
• Respiratory symptoms – Stephen Liben
• Nutrition and anorexia – Ross Drake
• Psychosocial symptoms – Rut Kiman
• Conclusions

Coffee Break

Oral presentation session (2 in parallel)

Working Session I – Epidemiology and surveys
Moderators: Finella Craig & Danai Papadatou

• The Epidemiology of Dying for Children and Adolescents in a Country
  without Provision of Paediatric Palliative Care (Portugal, 1987-2011)
  Ana Lacerda
• Identification, Categorisation and Mapping of Paediatric Palliative Care (PPC)
  Services in Europe: Results of the European Association for Palliative Care Survey
  Ebun Abarshi
• Transferring Critically Ill Babies and Children Home to Die from Intensive Care Units:
  A National Survey Exploring the Experiences and Views of Health Care Professionals
  Katy Morton
• Access to Opioids in Argentinean Children with Advanced Cancer: Practices and Social
  Representations about Opioid use and Prescription. Results from a National Mapping Study
  María Bevilacqua
• Closing remarks

Room San Francesco/San Bernardino da Siena
Working Session II – Education and Training
Moderators: Joan Marston & Domenica Taruscio

• Seeking Excellence: A Baseline Study of the Clinical Learning Requirements of Staff
  within Laura Lynn Ireland´s First Children´s Hospice
  Claire Quinn
• An Exploration of Medical Student´s Understanding of Paediatric Palliative Care
  and the Educational Value of a Short Teaching Programme in a Children´s Hospice
  Joanne Balfe
• The Education in Palliative and End of Life Care (EPEC) – Pediatrics: Behavior Change
  in Pediatric Palliative Care (PPC) through a “Train-the-Trainer” Curriculum
  Stefan Friedrichsdorf
• Italian Core Curriculum in Pain Management and Pediatric Palliative Care
  Lucia De Zen
• Closing remarks

Lunch and Poster visit

Special session No pain for Children Award 1st Prize

Bereaved Siblings’ Advice to Health Care Professionals Working with Children
with Cancer and their Siblings
Malin Lövgren

Plenary Session: Pathways in special situations

Moderators: Mary Ann Muckaden & Marcello Orzalesi

• Perinatal – Alexandra Mancini
• Cardiac disease – Elizabeth Blume
• Neuromuscular disease – Anita Simonds
• Conclusions

Coffee break

Oral presentation session (2 in parallel)

Working Session III – Research Issues
Moderators: Julie Ling & Rut Kiman

• Research for Beginners – A Workshop to Teach Basics in Pediatric Palliative Care Research
  Julia Wager
• Research Governance and Study Design in Palliative Care Research in Children with Cancer
  Are We Learning from Ourselves?
  Christopher Barton
• Research Priorities in Pediatric Palliative Care: A Delphi Study
  Justin Baker
• What Do Families Say about Participating in a Randomized Controlled Trial in Pediatric Palliative Care?
  Veronica Dussel
• Participation of Terminally Ill Children with Cancer in Clinical Trials
  Ivana van der Geest
• Closing remarks

Room San Francesco/San Bernardino da Siena
Working Session IV – Parents and Siblings
Moderators: Anna Garchakova & Zipporah Ali

• Bereaved Siblings’ Experiences of the Brother’s or Sister’s Cancer Death: A Nationwide Follow-up Study 2-9 Years Later
  Malin Lövgren
• The Burden of Home Care: Parent’s Care in Children with Complex Physical Healthcare Needs Eligible
  for Paediatric Palliative Care
  Barbara Schiavon
• How Well do Serbian Parents of Children Suffering from Malignant Disease Understand what Pediatric Palliative Care is (PPC)?
  Tamara Klikovac
• Depression and Anxiety in Siblings of Children with a Chronic Illness: Child and Parents’ Perspective
  Alessandra De Gregorio
• Measuring Stress in Parents of Medically Fragile Children at the Time of Referral for Home Care
  Services Using the Pediatric Inventory for Parents (PIP)
  Andrea Postier
• Closing remarks

Keynote session

End of life care: Psychosocial and spiritual aspects
Barbara Sourkes

Plenary Session: Emerging issues in Paediatric Palliative Care

Moderators: Joan Marston &  Zipporah Ali

• Disability – Adriano Ferrari
• Cultural and ethnic diversity – Şenay Kaldirim-Celik
• Assessing local needs – Martha Mherekumombe
• Integrative Therapies in Pediatric Palliative Care: Hypnosis – Stefan Friedrichsdorf
• Conclusions

Coffee break

Oral presentation session (2 in parallel)

Working Session V – End-of-life Issues
Moderators: Finella Craig & Anna Garchakova

• A Good Death? Factors Related to Bereaved Parental Perspective of End-of-Life Care and Quality of Death
  in Children with Advanced Heart Disease
  Sonja Ziniel
• The Way Parents of Children with Incurable Cancer Gain insight in and Attend to the “Voice of their Child” at the End of Life
  Marijke Kars
• Withdrawal of Mechanical Ventilation at “End of Life” beyond the Paediatric and Neonatal Intensive Care Unit (PICU & NICU)
  What Really Happens?
  Joanna Laddie
• End of Life Care in Hospital: Scope for Paediatric Palliative Care Involvement?
  Lynda Brook
• Closing remarks

Room San Francesco/San Bernardino da Siena
Working Session VI – Communication, Ethics and Spirituality
Moderators: Danai Papadatou & Myra Bluebond Langner

• Spiritual Interventions in Families of Southeast Asian Children with Cancer during Palliative Care
  Issarang Nuchprayoon
• The Dynamics of Interviewing in Research Studies with Parents of Children Receiving Palliative Care
  Honor Nicholl
• How Does the Belgian Law on Child Euthanasia Impact a Belgian PPC Course?
  Marie Friedel
• Resilience and Professional Quality of Life of Health Care Givers Working with Children in Severe Medical Conditions:
  The Role of Spirituality of Health Care Professionals in a Pediatric Cardiac Intensive Care Unit (PCIC)
  Ulrike Schloderer
• Closing remarks

Lunch and Poster visit

Plenary Session: Research in Paediatric Palliative Care

Moderators: Myra Bluebond Langner & Julie Ling

• Ethics – Richard Hain
• Evaluation of services – Monika Führer
• Patient outcomes – Julia Downing
• Conclusions

Coffee break

Oral presentation session (2 in parallel)

Working Session VII – New Tools and Strategies
Moderators: Domenica Taruscio & Stefan Friedrichsdorf

• The Changing Face of Children’s Palliative Care – Children’s Hospice an Option for Children with
  Complex Technological Needs in their Transition from Hospital to Home?
  Jayne Price
• Implementing PICU Screening Criteria for Unmet Pediatric Palliative Care Needs: A Novel Application of the IPAL-ICU Project
  Jessica Turnbull
• The Impact of Introduction the Sleep Diaries and a Sleep Evaluation Questionnaire in the Clinical Practice of a PPC Service
  Delia Birtar
• Debrief Meetings as an Evolving Tool for Evaluation & Development of a High Quality Paediatric Palliative Care Service
  Pat Sartori
• To become an Artist during Hospital Days Linking Art and Health for Children with Life Limiting Conditions (LLC) in a Pediatric Palliative Care Unit (PPC)
  Catalina León
• Closing remarks

Room San Francesco/San Bernardino da Siena
Working Session VIII – Models and Local Experiences
Moderators: Mary Ann Muckaden & Zipporah Ali

• Neonatal Palliative Care: The Experience of a Portuguese Program
  Joana Mendes
• Children’s Palliative Care (CPC) Project in Developing Country: Lessons Learnt
  Pradnya Talawadekar
• Can Perinatal Palliative Care Be Improved by a Pathway? A Pilot Scheme to Assess will Be Discussed
  Patrick Carragher
• An Evaluation of Models of Children’s Palliative Care in sub-Saharan Africa
  Julia Downing
• Pediatric Palliative Care (PPC) and Domiciliary Long-term Mechanical Ventilation (DLTMV):
  The Experience of the Veneto Regional PPC Network (RPPCN)
  Francesca Rusalen
• Closing remarks

Keynote session

The rights of the dying child
Kathy Foley & Marcello Orzalesi

Conclusions and Closing Remarks

Joanne Wolfe & Franca Benini