Program

Wednesday, 16^th October 2024

Reception desk times:

Pre-Congress Workshops 08.00 – 08.30

Congress delegates 10.00 – 19.00

08.30 – 12.30        Pre-congress Workshops  

12.30 – 13.30        Lunch

13.30 – 16.30        Pre-congress Workshops

Pre-congress Workshops:

 Course I: Perinatal PPC                                                                                               

Coordinators: Brian S. Carter, Maria Azucena Niño Tovar, Tanja Pedersen

Jacopone da Todi Room (Ground Floor)

Course II: Communicating Bad News

Coordinators: Justin N. Baker, Esther H. Ammon, Michelle R. Brown, Alexis Morvant

Room A (1^st floor)

Course III: The Management of Pain and Troublesome Symptoms in PPC

Coordinators: Poh Heng Chong, Ross Drake, Michelle Koh

San Francesco Room (Ground Floor)

Course IV: Difficult Choices: Bioethical Strategy                                               

Coordinators: Joana Mendes, Marie Friedel, Daniel Garros

San Bernardino Room (Ground Floor)

 17.30 – 19.30        Opening ceremony

• Welcomes
• Keynote lecture: The Roots of PPC – Joanne Wolfe
• Keynote Lecture : The Present Day – Ana Lacerda
• Keynote Lecture : Future Horizons – Sophie Bertaud, Victoria Salvo, Elizabeth Seashore (Young Professional Committee)
• Young Researchers Award presented by the Vlček Family Foundation
• Mauro Sentinelli Scholarships
• Vittorio Ventafridda Award

19.30 – 20.30        Icebreaker Reception  

Thursday, 17^th October 2024

Reception opens at 08.00 a.m.

08.30 – 09.00        Plenary: Gaining insights

• • • •   AI and Robotics in PPC – Alessandro Masserdotti

 09.00 – 10.30        Plenary: Pushing the boundaries of PPC
                                 Moderators: Brian S. Carter, Danai Papadatou

• • • • High Tech: an Opportunity or a Limit? – Daniel Garros
      • Extreme Preterm Neonates and Perinatal PPC– Elvira Parravicini
      • Transitional Care of Young Adults – Julie Hauer

10.30 – 10.45        Young researcher Award 1^st prize

10.45 – 11.15        Coffee break

11.15 – 12.15        Oral Abstract presentation session (3 in parallel)
                              Auditorium (Basement Level)

                            Working session 1: Communication
                             Moderators: Justin N. Baker, Jared Rubenstein

• • • Beyond illness: a qualitative exploration of talking about the future in pediatrics with IMPACT – Julie Brunetta
    • Identification of age-appropriate ACP communication in children with chronic medical conditions – Leonie la Rondelle
    • Compassionate communication with families during evaluation for death by neurologic criteria – Regina Okhuysen-Cawley
    • Parents communication with a child with Juvenile Neuronal Ceroid Lipofucinosis about the diagnosis – Torun Marie Vatne

                           San Francesco Room (Ground Floor)
                          Working session 2: Caregivers and family
                            Moderators: Stefan J. Friedrichsdorf, Huda Abu-Saad Huijer

• • • Evaluating PPI activities within a paediatric palliative care research centre – Laura Barrett
    • Critical and often missed steps in launching advance care planning for youth: parental perspectives – Lucie Hrdličková
    • Interdisciplinary collaboration in pediatric palliative care: perceived barriers and facilitators – Maureen Kemna
    • Understanding the needs of Pediatric Palliative caregivers in Washington, USA – Nikhita Vaddineni

Room A (1^st floor)

Working session 3: Bereavement 1

Moderators: Anna Garchakova, Ulrika Kreicbergs

• Working with bereaved parents to develop digital grief resources to help staff and bereaved parents – Rebecca Candon/Breffni McGuinness
• Bereaved parents’ decision-making about location of end-of-life care for children – Ashleen Crowe
• Messages from heaven: unexplainable experiences among bereaved parents- Eva De Clercq
• Bereaved parents’ experiences of paediatric end-of-life care: a UK multi-site qualitative study – Julia Hackett

12.15 – 13.30        Lunch and Poster visit (Session 1, see list on page …)

13.30 – 15.00        Young Professionals Plenary: Diversity, Equity and Inclusion in PPC

Moderators: Sophie Bertaud, Elizabeth Seashore

• Racism, Ethics, and Palliative care – Mehrunisha Suleman
• Honouring Diverse Cultural and Religious Practices – Joe El Khoury
• Equity and the Delivery of PPC in Low and Middle-Income Countries – Julia Downing

15.00 – 16.15         Poster visit (coffee station) – (Session 2, see page…)

16.15 – 17.15        Oral Abstract presentation session (3 in parallel)

                               Auditorium (Basement Level)

                               Working session 4: Young Professional Session

Moderators: Sophie Bertaud, Victoria Salvo

• Parent and professional experiences of 24/7 paediatric end-of-life care: shining a light on inequity – Laura Barrett
• Transformed by song: The impact of music on adolescents and young adults living with advanced cancer – Robert Bennett
• Breaking barriers: access to pain medicines for paediatric palliative care worldwide – Julia Downing
• Rapid review of patient and public involvement work with parents of children with serious illness – Pru Holder

San Francesco Room (Ground Floor)

Working session 5: The importance of Team

Moderators: Poh Heng Chong, Daniel Garros

• Training teams in pediatric advance care planning: transfer of knowledge and communication skills – Marijanne Engel
• Resources required to provide neonatal palliative care: Supporting the nursing workforce – Alexandra Mancini-Smith
• Successful implementation of a Pediatric Palliative Care and Hospital at Home Program – Andres Piolatti-Luna
• Collaborative working improves access to paediatric palliative care – Joanna Woolley

Room A (1^st floor)

Working session 6: Miscellaneous

Moderators: Mercedes Bernadá, Lorna Fraser

• Systemic development of Paediatric Palliative Care in the Czech Republic: Lesson-drawing – Jiri Krejci
• Impact of a Pediatric Palliative Care program on regional children’s healthcare utilization and cost – David Lawrence Lysecki
• Networks in developing Palliative Care for children – Joan Marston
• State-of-Play in Pediatric Palliative Care in Luxembourg: An exploratory mixed methods study – Micha Massaad

17.15 – 17.30        Room Change

17.30 – 18.30        Focus Sessions (in parallel)

• Shared Care Planning – Why, When, Where – Sergi Navarro Vilarrubí
• Palliative Sedation: When and How – Marco Bolognani
• Self-compassion, Growth and Development for Healthcare Professionals in PPC – Jared Rubenstein

Friday, 18^th October 2024

Reception opens at 08.00 a.m.

08.30 – 09.00        Plenary: Gaining insights

• The Use of Telephone Interview for Emergencies at Home – María Avilés Martínez

09.00 – 10.30        Plenary: Using Assessment Tools in PPC

Moderators: Huda Abu-Saad Huijer, Poh Heng Chong

• Quality of Care Assessment Tools – Prasanna Ananth
• Using Tools for Outcome Measurement in PPC – Richard Harding
• Opportunities and Limits – Lorna Fraser

10.30 – 11.00        Coffee break

11.00 – 12.00        Oral Abstract presentation session (3 in parallel)

Auditorium (Basement Level)

                               Working session 7: Pain and severe discomfort – identification and control

Moderators: Stefan J. Friedrichsdorf, Julie Hauer

• Advancing pediatric pain management: Global comfort promise successes in Latin America – Ximena Garcia-Quintero
• Transforming pediatric palliative practice: The comfort promise initiative for reducing needle pain – Gezy Giwangkancana
• Shedding light on sleep: evaluating diagnostic measures for children with life-limiting conditions – Larissa Kubek
• Neuro-irritability: The great unknown – Anna Mercante

San Francesco Room (Ground Floor)

Working session 8: Tools and Technology

Moderators: Ross Drake, Richard Harding

• A novel co-designed tool to support CPC providers worldwide explore and utilize their service data –Laura Dale-Harris
• Virtual Reality (VR) in Palliative Care within home healthcare for children and adolescents – Daniel Kemppi
• Quality of care on an inpatient pediatric palliative care unit – Pia Schmidt
• The use of social media for sharing information on ppc needs: a social media analysis – Sofia Germinario

Room A (1^st floor)

Working session 9: Siblings, parents and Family

Moderators: Renée McCulloch, Danai Papadatou

• Provision of psychological support for siblings of seriously ill children from parental perspective – Grazina Kokesova Kleinova
• Maternal role in caring for children with severe cognitive impairment in pediatric palliative care – Anna Santini
• Changing focus: parents reflecting on hope during hospice through photovoice – Allie Superdock
• MiniSIBS, a intervention supporting preschool siblings of children with life limiting disorders – Torun Marie Vatne

12.00 – 13.30        Lunch and Poster visit – (Session 3, see list on page…)

13.30 – 14.30        Oral Abstract presentation session (3 in parallel)

Auditorium (Basement Level)

                               Working session 10: Survey and systematic reviews

Moderators: Julia Downing, Ross Drake

• Nationwide 24/7 Paediatric Palliative Care in Denmark. Data from 2016-2023 – Maja Abitz
• Survey of pediatric intensive care team professionals regarding pediatric palliative care – Mercedes Bernadá
• Factors affecting child development in the context of serious illness: a scoping review – Leonie la Rondelle
• Specialized Palliative Care in inherited metabolic diseases – a MetabERN survey – Anja Lee

San Francesco Room (Ground Floor)

Working session 11: Miscellanous 2

Moderators: Ana Lacerda, Joanne Wolfe

• The importance of specialized palliative care on pediatric cancer patients’ choice of place of death – Thea Marie Traun Andersen
• Pediatric Palliative Care and Emergency Department: how taking charge changes admissions – Valentina Folgheraiter
• Coming of age: Development of a pediatric palliative care program in the standard-of-care era – David Lawrence Lysecki
• Mapping trajectories of care in the last year of life in cardiovascular complex chronic conditions – Ashley Ridley

Room A (1^st floor)

Working session 12: End of life care

Moderators: Justin N. Baker, Joana Mendes

• Professionals’ experiences of delivering paediatric end-of-life care: a multi-site qualitative study – Julia Hackett
• Health and social care professional views on decision-making for place of a child’s end-of-life care – Rachel McCauley
• Compassionate Extubation at Home (CEAH) in Paediatric Palliative Care: A case series – Mei Chan Grace Ng
• Complex chronic conditions (CCCs) vs. life-limiting conditions (LLCs)…how do these lists compare? – Samantha Smith

14.30 – 15.30        Poster visit (coffee station) – (Session 4, see list on page …)

15.30 – 17.00        Plenary: Managing Serious Illness in the Home

Moderators: Mercedes Bernadá, Anna Garchakova

• Pain and Symptom Management – Renée McCulloch
• Support for Family Members and Strategies for Engaging the Community – Ulrika Kreicbergs
• End-of-Life Care – Ricardo Martino Alba

17.00 – 17.30        Closing Ceremony

• Conclusions – Ann Goldman & Brian Carter
• Thanks & Arrivederci – Franca Benini & Silvia Lefebvre D’Ovidio