Programme

WEDNESDAY 19th NOVEMBER 2014

PRE-CONGRESS COURSES

08:00 – 08:30

registration


08:30


10:30

Room San Francesco
Pain management
Leaders: Finella Craig & Boris Zernikow

 

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

10:30

Coffee Break


11:00


13:00

Room San Francesco
Pain management
Leaders: Finella Craig & Boris Zernikow

 

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

CONGRESS

09:30 – 13:00


15:00 – 17:00

Registration


17:00


19:30

Auditorium

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

19:30


21:00

Icebreaker – Welcome cocktail and buffet



THURSDAY 20th NOVEMBER 2014

 

08:00 – 08:30

Registration

08:30


10:45

Auditorium

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


10:45

Coffee Break

11:15


12:30

Auditorium

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 IIEducation 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

12:30

Lunch and Poster visit

14:00


14:15


Auditorium

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


14:15


16:00


Auditorium

Plenary Session: Pathways in special situations

Moderators: Mary Ann Muckaden & Marcello Orzalesi

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


16:00

Coffee break


16:30


18:00


Auditorium

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


18:00


18:30



Auditorium

Keynote session

End of life care: Psychosocial and spiritual aspects
Barbara Sourkes



FRIDAY 21thNOVEMBER 2014

 

08:30


10:45


Auditorium

Plenary Session: Emerging issues in Paediatric Palliative Care

Moderators: Joan MarstonZipporah 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


10:45

Coffee break


11:15


12:30


Auditorium

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


12:30

Lunch and Poster visit

14:00


15:30



Auditorium

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


15:30

Coffee break


16:00


17:30


Auditorium

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


17:30


18:00

Auditorium

Keynote session

The rights of the dying child
Kathy Foley & Marcello Orzalesi


18:00


18:20


Auditorium

Conclusions and Closing Remarks

Joanne Wolfe & Franca Benini

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Contact Info

Congress Secretariat and Organizers Fondazione Maruzza Lefebvre D'Ovidio Onlus
Via del Nuoto, 11
00135 - Rome Italy
Tel: (+39) 06 3290609
Fax: (+39) 06 36292743
Email: icppc@maruzza.org

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