Program

Reception desk times:

Pre-Congress Workshops 08.00 – 08.30

Congress delegates 10.00 – 18.00

08.30 – 12.30        Pre-congress Workshops

Course I: Perinatal Palliative Care

Coordinator: Brian S. Carter, Kang Zhi Lin, Alexandra Mancini

Jacopone da Todi Room (Ground Floor)

Course II: Children Dependent on Lifesaving Technology

Coordinators: Daniel Garros, Julie Hauer, Joana Mendes

Room A (1^st floor)

Course III: Bereavement Care

Coordinator: Justin N. Baker, Raghnild Fretland, Alexis Morvant

San Francesco Room (Ground Floor)

Course IV: Research Fundamentals: From Research Idea to Written Report

Coordinator: Julia Downing

San Bernardino Room (Ground Floor)

12.30 – 13.30        Lunch

13.30 – 16.30        Pre-congress Workshops

OPENING CEREMONY (17.30 – 20.00)

WELCOMES

VITTORIO VENTAFRIDDA AWARD

KEYNOTE LECTURE

Paediatric Palliative Care Research: Emerging Evidence and Recent Studies

Julie Hauer

KEYNOTE LECTURE

Key Developments in Paediatric Palliative Care Practice over the Past Five Years

Stefan J. Friedrichsdorf

YOUNG RESEARCHERS AWARD 2026

Presented by the Vlček Family Foundation

KEYNOTE LECTURE

Has Life Really Changed for the Patient and Family? Which Aspects Need More Attention and Implementation?

A Patient/Family Experience

Filippo Arnaudo, Federica e Matteo Zandali.

ENTERTAINMENT INTERLUDE

ICEBREAKER COCKTAIL

Reception opens at 08.00 a.m.

08.30 – 09.00        Auditorium (Basement Level)

                               Plenary: Gaining insights

                               Managing Uncertainty – Brian S. Carter

09.00 – 10.30        Auditorium (Basement Level)

                                Plenary session 1: From Research to Clinical Practice: Symptom Management

                               Moderators: Mercedes Bernadá, Joanne Wolfe

• • • Neuroirritability: Diagnosis and Management – Harold Siden
    • Sleep Disturbances – Judith Owens
    • Rare, Difficult to Manage Symptoms – Stefan J. Friedrichsdorf

10.30 – 10.45        Auditorium (Basement Level)

Vlček Family Foundation Young Researcher Award-1^st prize

Toward Improved Access: Lessons from Four Decades of Paediatric Palliative Care in Canada – Liana Bailey

10.45 – 11.15        Coffee break

11.15 – 12.15        Oral Abstract presentation session

Auditorium (Basement Level)

Working session 1: Essential Clinical Care A

Moderators: Brian S. Carter, Daniel Garros

• • • Parents’ Experiences of Perinatal Palliative Care after Prenatal Diagnosis of Severe Fetal Conditions – Paola Camponovo
    • Conceptualizing Quality of Life for Children with Medical Complexity and Neurological Impairment – Andrea Johnson
    • Introducing the ‘Cassandra complex’ in PPC: a pilot study on clinician-family prognostic discordance – Jordi Royo
    • BEACON: Developing a Breakthrough Pain Assessment Questionnaire for Children and Young People – Christina Liossi

Room A (1^st floor)

Working session 2: Psychosocial Well-being A

Moderators: Justin N. Baker, Ulrika Kreicbergs

• • • Nurses’ Growth in Pediatric Palliative Care: An Interpretative Phenomenological Analysis – Micha Massaad
    • Rising from the Ashes: Religious Narratives of Hope among Bereaved Parents – Alexandra Superdock
    • Caring for Siblings Amidst a Family Life Marked by Child Loss to Cancer – Eva De Clercq
    • What is in Your Suitcase? From Sibling Invisibility to Recognition in Pediatric Palliative Care – Marta Scrignaro

San Francesco Room (Ground Floor)

Working session 3: Miscellaneous A

Moderators: Veronica Dussel, Anna Garchakova

• • • Expanding Horizons in Pediatric Advance Care Planning: A Faculty Development Approach – Julie Brunetta
    • Is Telemedicine Fit for Pediatric Palliative Care? A Systematic Review – Chiara Daicampi
    • Pulse Check: Assessing Pediatric Palliative Care Integration in the Cardiac Intensive Care Unit – Andrea Cuviello
    • Who Cares for the Carers? Ethical Dilemmas of Responsibility and Self-Care During Clustered Crisis – Gražina Kokešová Kleinová

12.15 – 13.30        Lunch and Networking Break

13.30 – 15.00        Auditorium (Basement Level)

Plenary session 2: What Counts as Paediatric Palliative Care? Defining the Field for the Next Generation (Young Professionals Session)

Moderators: Joe El Khoury, Nicholas Purol, Sidhart Vemuri

• • • Expanding the Scope: From Standards to Global Practice – Megan Doherty
    • Rethinking “Palliative”: Ethical Complexity and the Concept of Harm – Richard Hain
    • Interprofessionalism and Power: Who Defines Palliative Care? – Arika Moore

15.00 – 16.15        Networking Break

16.15 – 17.15        Oral Abstract presentation session

                               Auditorium (Basement Level)

Working session 4: Ethics and Human Rights

Moderators: Joe El Khoury, Nicholas Purol, Sidhart Vemuri

• • • Te Whare Kaiao – Empowering Families to Care for their Child with Palliative Care Needs – Tess Moeke-Maxwell
    • Earlier Access and Evolving Referral Patterns in a Hospital-Based Paediatric Palliative Care Service – Ané Büchner
    • Considerations and Challenges in Physician Decision-Making for Advanced Pediatric Cancer in LMICs – Marta Salek
    • Maintaining School Routines: A Holistic Approach to Pediatric Palliative Care – Monique Albuquerque Ferreira

Room A (1^st floor)

Working session 5: Organizational Aspects A

Moderators: Veronica Dussel, Julie Hauer

• • • Catalysing Change: A Regional Leadership Initiative Creating System-Level Change in Southeast Asia – Megan Doherty
    • Adolescents’ Perspectives of Complex Chronic and Palliative Care across Home and Healthcare Settings – Eddy Carolina Pedraza Salcedo
    • Quality Indicators and Core Outcome Sets in Pediatric Palliative Care: A Systematic Review – Robin Fierst van Wijnandsbergen
    • Prioritizing Complexity: A Structured Referral System for Case Discussions in PPC Team – Federico Pellegatta

San Francesco Room (Ground Floor)

Working session 6: Psychosocial Well-being B

Moderators: Nur Elçin Boyacıoğlu, Michelle A. Meiring

• • • “Closing the Circle”: Postmortem Interview after a Child’s Death in Pediatric Palliative Care – Carlotta Ghironi
    • Family Talk Intervention Improves Communication and Psychosocial Health in Pediatric Palliative Care – Kerstin Ivéus
    • Spiritual Themes and Meaning-Making in Pediatric Palliative Care: A Retrospective Chaplaincy Study – Lidia Zloh
    • From Global Quality Indicators Research to Local Improvement in Pediatric Oncology End-of-life Care – Rima Saad Rassam

17.15 – 18.15        Focus Sessions

1. AI and New Technologies in PPC: Use in Daily Practice – Diana Ferro
2. Beyond ‘Dimensions’: Building an Existential Understanding of Suffering in PPC – Daniel Toro-Pérez
3.  Models of training/training opportunities in PPC – Megan Doherty

Reception opens at 08.00 a.m.

08.30 – 09.00        Auditorium (Basement Level)

                               Plenary: Gaining insights

Social Mourning/Digital Spaces – Alejandro Nespral

09.00 – 10.30        Auditorium (Basement Level)

Plenary 3: From Research to Clinical Practice: End of Life Care

                               Moderators: Stefan J. Friedrichsdorf, Anthony R. Herbert

• • • Palliative Sedation – Joanne Wolfe
    • Aggressive Treatments and Parental Choice – Michelle Koh
    • Managing Last Hours of Life at Home – Emily Harrop

10.30 – 10.45        Auditorium (Basement Level)
                             Book Presentation – Childness and the Myth of the Unfinished Human – Richard Hain 

10.45 – 11.15        Coffee break

11.15 – 12.15        Oral Abstract presentation session

Auditorium (Basement Level)

Working session 7: Psychosocial Well-being C

Moderators: Ann Goldman, Michelle A. Meiring

• • • Developing a Transferable Group Intervention Model in Paediatric Palliative Care – Emília Comas Carbonell
    • Pain Management in Children with SNI does not always improve Caregiver Well-being: Results of an RCT – Gail Andrews
    • Dignity Therapy in Pediatric Palliative Care: Development of a By Proxy Protocol – Ana Raquel Sapeta
    • Reducing Psychological Harm Following the Death of a Child Through Trauma-Informed Bereavement Care – Crystal Luk-Worrall

Room A (1st floor)

Working session 8: Organizational Aspects B

Moderators: Anna Garchakova, Joana Mendes

• • • Pediatric Palliative Care Referral at DNR Designation Reduces Hospital Resource Use in LMICs Country – Anwar Al-Nassan
    • French National Guidelines for Pediatric Palliative Care Pathways – Ashley Ridley
    • Mapping Stakeholder Perspectives on Home Monitoring in Paediatric Complex and Palliative Care – Ana Paula Giordano
    • Exploring Values, Goals and Preferences in Paediatric Care: A Content Analysis of ACP Conversations – Leonie la Rondelle

San Francesco Room (Ground Floor)

Working session 9: Miscellaneous B

Moderators: Daniel Garros, Alejandro Nespral

• • • Integrated Palliative Care in Italian Pediatric Oncology Centres: Current Practice and Unmet Needs – Lucia De Zen
    • Fathers’ Experiences of Caring for a Child with a Progressive Life-Limiting Condition – Marianne Sjuls
    • Bereavement Groups in Paediatric Palliative Care: Parents’ Experiences in Denmark – Malene Beck
    • Ethical Attitudes Among Pediatric Palliative Care Professionals in Spain – Iñigo de Noriega Echevarría

12.15 – 13.30        Lunch and Networking Break

13.30 – 14.30        Oral Abstract presentation session

Auditorium (Basement Level)

Working session 10: Essential Clinical Care B

Moderators: Mercedes Bernadá, Julie Hauer

• • • Bridging SICP Adult and Pediatric Palliative Core Curricula: Developing a Transition Age Care Model – Iacopo Bellani
    • When Parents and Pediatricians Disagree: Clinicians’ Experiences in Pediatric Palliative Care – Ragnhild A. Fretland
    • The Grey Zone in Neonatal Life-and-Death Decision-Making: A Scoping Review – Lisa Willems
    • A National Centre of Research Excellence in Paediatric Palliative Care – Anthony R. Herbert

Room A (1st floor)

Working session 11: Education/Training in Children’s Palliative Care

Moderators: Julia Downing, Justin N. Baker

• • • Between Empathy and Exhaustion: Examining Healthcare Providers’ Comfort with Pediatric Death Work – Andrea Cuviello
    • Impact of Simulation Training on Self-Efficacy in Paediatric Palliative Care – Sarah Sogeler
    • When the “Parent” is AI: Co-Producing Simulation for Serious Illness Communication Training – Naomi Goloff
    • Bereaved Parents as Co-Educators: Lessons from a Pilot Training Programme – Martin Loucka

San Francesco Room (Ground Floor)

Working session 12: Organizational Aspects C

Moderators: Ann Goldman, Anna Garchakova

• • • A children’s Palliative Care Assistant: Data-Driven Decisions through LLM Integration – Laura Dale-Harris
    • Shared Emergency Pathways for Children Receiving Pediatric Palliative Care – Martina Di Schiena
    • Building an Integrated Pediatric Palliative Care Service at a Teaching Hospital: A 5 Year Journey – Krithika Rao
    • Supporting Referral Decisions via Virtual Consultation for Children with Incurable Cancer in Wartime – Alexandra Müller

14.30 – 15.30        Networking Break

15.30 – 17.00        Auditorium (Basement Level)

Plenary 4: Home and Community- Based Care

                               Moderators: Brian S. Carter, Emily Harrop

• • • Sustainable Models of Care – Joana Mendes
    • Providing Support for the Family – Veronica Dussel
    • The Challenges of Developing Compassionate Communities in PPC – Justin N. Baker

17.00 – 17.30        Closing Ceremony

Conclusions