Congress Report

Report

FEEDBACK ANALYSIS

From the 16th to the 18th October 2024, the 6th Maruzza International Congress on Paediatric Palliative Care was held in Rome.

The 6th edition of the Congress saw the involvement of over 450 participants from 48 countries. It was the biggest event yet organised by the Maruzza Foundation, in fact attendee registration had to be closed earlier than foreseen due to the capacity restrictions of the venue. The attendees were divided professionally as follows: 37% doctors, 27% nurses, 6% psychologist, the remainder included researchers, students, volunteers, physiotherapists, sociologists, social workers etc.). Abstract submission for the 2024 edition also exceeded expectations, 207 abstracts were submitted for peer-review; 193 abstracts were accepted for presentation during the Congress; 49 abstracts were designated for oral presentations during the working sessions and 144 abstracts assigned for the virtual poster exhibition. Abstracts were submitted from a vast range of countries worldwide including: Brazil, Japan, Kazakhstan, Latvia, Mexico, Ukraine, Uruguay, Hong Kong, etc.

Four pre-congress workshops providing knowledge-sharing opportunities on different themes of significant interest and lead by eminent, international experts were organised to precede the congress. 142 participants attended the 4 eight-hour workshops that dealt with the following subjects: Perinatal PPC (Coordinators: Brian S. Carter, Maria Azucena Niño Tovar, Tanja Pedersen); Communicating Bad News (Coordinators: Justin N. Baker, Esther H. Ammon, Michelle R. Brown); The Management of Pain and Troublesome Symptoms in PPC (Coordinators:  Poh Heng Chong, Ross Drake, Michelle Koh); Difficult Choices: Bioethical Strategy (Coordinators: Joana Mendes, Marie Friedel, Daniel Garros).

Immediately following the pre-congress workshops, the Congress’ Opening Ceremony on the 16th October began with the announcement of the Maruzza Foundation 25th Anniversary celebrations through the projection of a brief film outlining the Foundation’s journey in PPC. The proceedings were presided by the Maruzza Foundation’s President, Silvia Lefebvre D’Ovidio, accompanied by the Foundation’s first Scientific Director, Dr Paolo Cornaglia. The Congress Chair, Prof. Franca Benini, assisted by the Congress’ Honorary President, Prof. Ann Goldman, and the 2024 Co-Chair, Prof Brian S. Carter, officially opened the 6th Congress. Three keynote lectures re aspects linked to the main theme of the Congress: ‘Roots And Horizons: Learning From Yesterday, Living Today, Shaping The Future’ were programmed, these included the intervention by the members of the Committee of Young Professionals called upon to organise part of the 6th Maruzza Congress’ scientific program. During the evening’s proceedings the Maruzza Foundation President presented the Ventafridda Award 2024 to Prof. Danai Papadatou from Greece for her endeavours and commitment to promoting and developing palliative care in her country and beyond, specifically in the area of psychological support for children with serious illness and bereavement counselling for families and siblings.

The family members of Mauro Sentinelli presented, in his memory, two scholarships for the Master’s Degree program in Pain Therapy and Paediatric Palliative Care proposed by Padua University and conferred by the Maruzza Foundation for the academic year 2023/2024 to Irene Avagnina and Anna Marinetto, and for the academic year 2024/2025 to Viviana Carbone and Giulia Cervi.

Finally, to end the Award presentations, Mr. Ondřej Vlček, the Founder of Vlček Family Foundation based in the Czeck Republic, presented the Young Researcher Awards 2024 for the best abstracts submitted by a leading author under 35 years, as adjudicated by the  Scientific Committee. In third place with an abstract entitled: “Compassionate Extubation at home in Pediatric Palliative Care“, from Singapore, Grace Ng. and in second place with the abstract “Health and social care, professional views on decision making for place of a children’s end of life care“, from Ireland, Rachel Mccauley. The first prize of the Young Researcher Award for Best Abstract 2024, with the abstract “Cultural differences in shared decision-making in Paediatric Palliative Care“, was awarded to Luca Nicot from Germany.

The evening concluded with an amusing interlude by the street artist Paradoxa and his presentation ‘The Voyage of a Bubble’.  At the end of the Opening Ceremony the Congress participants were invited to celebrate the Maruzza Foundation’s Silver jubilee at the Icebreaker cocktail and buffet.

Over the 2 days of the 2024 congress, 4 plenary sessions, each with 3 specialist lectures by international experts covering topics linked to the main theme of ‘Roots And Horizons’ were scheduled. These were interspersed with a total of 12 working sessions for the oral presentations and 4 virtual poster exhibitions of the selected abstracts. The range of topics covered included: ‘Pushing the Boundaries of PPC’, High tech in PPC, Perinatal and Neonatal PPC, Transitions Care for young adults, Diversity, Equity and Inclusion in PPC, Diverse Cultural and Religious Practices, PPC delivery in LMIC, The Use of Assessment Tools and Surveys in PPC, End of life Care, Managing Serious Illness In The Family Home etc.

Both days began with a 30-minute introductory Gaining Insight’ session that proposed novel topics linked to Children’s palliative care provision: ‘AI and Robotics’ in PPC and ‘The Use of Telephone Interview for Emergencies at Home’.

Particularly appreciated were the 3 parallel focus/networking sessions held at the end of the first day which fostered discussion and interaction between participants on the subjects: Shared Care Planning, Palliative Sedation and Self-compassion, Growth and Development for Healthcare Professionals in PPC.

The Congress concluded with an impeccable summing up of the congress procedures by the Congress Chairs and Honorary President, the Foundation’s President concluded by wishing the participants an uplifting  Arrivederci’ in Rome in 2026 for the 7th Maruzza International Congress on Paediatric Palliative Care.

During the days following the Congress, in collaboration with the EPEC-Pediatrics Team, the Maruzza Foundation proposed the ‘EPEC-Pediatrics Train the Trainer Workshop’ attended by 42 participants from 22 Countries and, for the first time in Europe, the ‘EPEC-Pediatrics Master Facilitator Program’ that offered the cutting-edge training to 21 participants from 11 Countries.

 

Videos

16th October 2024

Welcomes
Silvia Lefebvre D’Ovidio
Franca Benini
Paolo Cornaglia
Ann Goldman
Brian S. Carter

Keynote lecture
The Roots of PPC 
Joanne Wolfe

Presentation Vittorio Ventafridda Award

Keynote Lecture
The Present Day
Ana Lacerda

Presentation Mauro Sentinelli Scholarships

Keynote Lecture
Future Horizons
Sophie Bertaud, Victoria Salvo, Elizabeth Seashore (Young Professional Committee)

Young Researchers Awards presented by the Vlček Family Foundation 

17th October 2024

Gaining Insights
AI and Robotics in PPC
Alessandro Masserdotti

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: for Everyone? – Ricardo Martino Alba

Vlček Family Foundation Young Researcher Award-1st prize
Cultural differences in shared decision-making in pediatric palliative care
Luca Nicot

Young Professionals Plenary: Diversity, Equity and Inclusion in PPC
Moderators: Sophie Bertaud, Elizabeth Seashore
Racism, Ethics, and Palliative Care – Jonathan Koffman
Honouring Diverse Cultural and Religious Practices – Joe El Khoury
Equity and the Delivery of PPC in Low and Middle-Income Countries – Julia Downing

18th October 2024

Plenary: Gaining Insights
The Use of Telephone Interview for Emergencies at Home
María Avilés Martínez

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

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

Closing Ceremony
Conclusions – Ann Goldman, Brian S. Carter
Thanks & Arrivederci – Franca Benini , Silvia Lefebvre D’Ovidio

Abstract book

Oral abstract presentations

17th October 2024

Working session 1: Communication

Moderators: Justin N. Baker, Jared Rubenstein

Beyond illness: a qualitative exploration of talking about the future in pediatrics with IMPACTJulie Brunetta

Identification of age-appropriate ACP communication in children with chronic medical conditionsLeonie la Rondelle

Compassionate communication with families during evaluation for death by neurologic criteriaRegina Okhuysen-Cawley

Parents communication with a child with juvenile neuronal ceroid lipofucinosis about the diagnosisTorun Marie Vatne

Working session 2: Caregivers and Family

Moderators: Stefan J. Friedrichsdorf, Danai Papadatou

Evaluating PPI activities within a paediatric palliative care research centreLaura Barrett

Critical and often missed steps in launching advance care planning for youth: parental perspectivesLucie Hrdličková

Interdisciplinary collaboration in pediatric palliative care: perceived barriers and facilitatorsMaureen Kemna

Understanding the needs of pediatric palliative caregivers in Washington, USANikhita Vaddineni

Working session 3: Bereavement 1

Moderators: Anna Garchakova, Ulrika Kreicbergs

Working with bereaved parents to develop digital grief resources to help staff and bereaved parentsRebecca Candon/Breffni McGuinness

Bereaved parents’ decision-making about location of end-of-life care for childrenAshleen Crowe

Messages from heaven: unexplainable experiences among bereaved parentsEva De Clercq

Bereaved parents’ experiences of paediatric end-of-life care: a UK multi-site qualitative studyJulia Hackett

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 inequityLaura Barrett

Transformed by song: the impact of music on adolescents and young adults living with advanced cancerVerna Hendricks-Ferguson

Breaking barriers: access to pain medicines for paediatric palliative care worldwideJulia Downing

Rapid review of patient and public involvement work with parents of children with serious illnessPru Holder

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 skillsMarijanne Engel

Resources required to provide neonatal palliative care: supporting the nursing workforceAlexandra Mancini-Smith

Successful implementation of a pediatric palliative care and hospital at home programAndres Piolatti-Luna

Collaborative working improves access to paediatric palliative careJoanna Woolley

Working session 6: Miscellaneous

Moderators: Mercedes Bernadá, Lorna Fraser

Systemic development of paediatric palliative care in the Czech Republic: lesson-drawingJiri Krejci

Impact of a pediatric palliative care program on regional children’s healthcare utilization and costDavid Lawrence Lysecki

Bereavement in pediatrics: the experience of the nurses of an Italian pediatric hospitalFederico Pellegatta

State-of-play in pediatric palliative care in Luxembourg: an exploratory mixed methods studyMicha Massaad

18th October 2024

Working session 7: Pain and Severe Discomfort – Identification and Control

Moderators: Stefan J. Friedrichsdorf, Joe El Khoury

Advancing pediatric pain management: Global comfort promise successes in Latin AmericaXimena Garcia-Quintero

Transforming pediatric palliative practice: the comfort promise initiative for reducing needle painGezy Giwangkancana

Shedding light on sleep: evaluating diagnostic measures for children with life-limiting conditionsLarissa Kubek

Neuro-irritability: the great unknownAnna Mercante

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 dataLaura Dale-Harris

Virtual Reality (VR) in palliative care within home healthcare for children and adolescentsDaniel Kemppi

The use of social media for sharing information on PPC needs: a social media analysisSofia Germinario

Working session 9: Siblings, Parents and Family

Moderators: Renée McCulloch, Danai Papadatou

Provision of psychological support for siblings of seriously ill children from parental perspectiveGrazina Kokesova Kleinova

Maternal role in caring for children with severe cognitive impairment in pediatric palliative careAnna Santini

Changing focus: parents reflecting on hope during hospice through photovoiceAllie Superdock

MiniSIBS, a intervention supporting preschool siblings of children with life limiting disordersTorun Marie Vatne

Working session 10: Survey and Systematic Reviews

Moderators: Julia Downing, Ross Drake

Nationwide 24/7 paediatric palliative care in Denmark. Data from 2016-2023Maja Abitz

Survey of pediatric intensive care team professionals regarding pediatric palliative careMercedes Bernadá

Factors affecting child development in the context of serious illness: a scoping reviewLeonie la Rondelle

Specialized palliative care in inherited metabolic diseases – a MetabERN survey – Anja Lee

Working session 11: Miscellanous 2

Moderators: Ana Lacerda, Joanne Wolfe

The importance of specialized palliative care on pediatric cancer patients’ choice of place of deathThea Marie Traun Andersen

Pediatric palliative care and emergency department: how taking charge changes admissionsValentina Folgheraiter

Coming of age: development of a pediatric palliative care program in the standard-of-care eraDavid Lawrence Lysecki

Mapping trajectories of care in the last year of life in cardiovascular complex chronic conditionsAshley Ridley

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 studyJulia Hackett

Health and social care professional views on decision-making for place of a child’s end-of-life careRachel McCauley

Compassionate extubation at home (CEAH) in paediatric palliative care: a case seriesMei Chan Grace Ng

Complex chronic conditions (CCCs) vs. life-limiting conditions (LLCs)…how do these lists compare?Samantha Smith

Poster presentations

Abdelaty - Pharmacists and Compliance: Can counselling improve adherence?

Alkhabbaz - Novel Needs Tool Supporting Interdisciplinary Collaboration Around Children with Palliative Needs

Amarri - Respite days in the pediatric palliative care Day Care in Emilia-Romagna: a pilot project

Annexstad - DMD-YOUNG Paediatric palliative care for a life-limiting disorder in transition to adulthood

Ayoub - Children with cancer and sibling’s experiences of participation in the Family Talk Intervention

Bäckdahl - Formation of a Pediatric Palliative Care team at Astrid Lindgren´s Children’s Hospital, Sweden

Barlova - Power of vision stimulation

Baron - Pain and discomfort in neonates eligible for Pediatric Palliative Care: assessment tools comparison

Barros - Beyond Pain - Emotional Support for Perinatal Grief

Bayliss - Joint Specialist Nursing Posts between Hospices & a Tertiary Palliative Care Centre

Bellizzi - The Rehabilitator Between Intensive Care and Palliative Care: A Pediatric Clinical Case

Bøås - Building Relations through Time and Music - Case Presentations from a newly startet PPW in Norway

Borda - Holistic approach and palliative intervention in supratentorial brain tumors- A retrospective study

Burlo - Care maps: an effective tool to evaluate complexity and needs in pediatric palliative care

Cervi - Children with Complex Chronic Condition in school setting

Chvilova Weberova -Development of a children's palliative care network in the Vysočina Region - Czech Republic

Constantino - Transcending - self and frontiers

Daniels - Ensuring Quality Care: The Vital Role of Needs Assessment in Children’s Palliative Care Development

De Tommasi - Two Letters Compared: Psychologist and Adolescent Dialogue about Turning Limits into Resources

Doherty - Building Pediatric Palliative Care Leadership Capacities: A Collaborative Initiative for South Asia

Doherty - Palliative Care Perceptions and Educational Needs Amongst Humanitarian Healthcare Professionals

Doherty - Pediatric palliative care attitudes and educational needs among humanitarian health professionals

Dvorakova - What Support Do Families Need Most in Perinatal Palliative Care? A Retrospective Chart Review Study

Fadhil - Navigating Needle Pain in Pediatric Cancer: Insights from a Low-Resource Setting

Fahner - Integration of research and implementation to support advance care planning: a nationwide approach

Ferrari-von Klot - Raising awareness: Real world data on palliative care for advanced pediatric cancers

Festøy - Acceptability and feasibility of the Paediatric Palliative Scoring Scale among nurses and physicians

Fitzgerald - Therapeutic Powers of Play Meeting the Needs of Children in Palliative Care

Fujita - Perceptions of Bereaved Mothers After Grief Support Groups: Analysis of Open-Ended Survey Responses

Garcia-Quintero - Bridging the Bereavement Support Gap in India: A Model for Global Application

Ghironi - Lived experience of parents of a child in palliative care: a phenomenological study

Ghironi - The volunteer role in Pediatric Palliative Care

Grassato de Carvalho - Diffuse intrinsic pontine glioma: When is timing to Palliative care

Grassato de Carvalho - Strategies to Alleviate Pain Undergoing Needle Procedures at a Pediatric Oncology Hospital

Guida - Pyridostigmine and neostigmine for intestinal dysmotility in pediatric palliative care: case series

Habimana - Need for training in psycho-emotional management front of serious illness and end-of-life

Hackett - The impact of Parent Involvement on a cohort study of home-blended diets in gastrostomy fed children

Harper - Supporting a Multidisciplinary approach to promote safe sleep at a childrens' hospice

Hrdlickova - Feasibility of implementing international pediatric palliative care standards in the Czech Republic

Hrdlickova - Palliative consultations tailored specifically to the unique needs of children with serious illness

Hruby - Pediatric Advanced Care Planning: development of tools for families and healthcare professionals

Ivéus - Parents long-term retention of the Family Talk Intervention in pediatric oncology

Je - Understanding Family Caregivers' Experience with Medically Complex Children at Home

Joy - Parental Prespective of Children With Life-Limiting Conditions Availaing of a Respite Stay

Kammin - Experiences of Music Therapy in Paediatric Palliative Care

Kathirgamanathan - How did the Preference for Child Home Deaths Change at GOSH, Through the COVID-19 Pandemic?

Kerr-Elliot - Care doesn't end at death: provision of post-death care for children in England

Kjellin - Training and implementation of palliative care representatives at Astrid Lindgren Childrens Hospital

Klintman - Specialized palliative home care for children decreases hospital care needs - a pilot study

Krákorová - Every Moment Matters

Kralovcova - Two entirely different stories. (From the communication "off stage".)

Kralovec - Forgotten Classics. Early Elisabeth Kübler Ross unread, misinterpreted and misunderstood

Kreicbergs - Parents’ experiences of a novel disease-modifying therapy for spinal muscular atrophy in Sweden

Lam - Nurse parental support using a mobile App in symptom management for children with medical complexity

Lee - Factors associated with Paediatric Palliative Screening Scale (PaPaS) scores: A retrospective study

Locatelli - Evaluation of a Perinatal Palliative Care Program by SWOT Analysis

Lundberg - The Family Talk Intervention among families with palliative care needs - Social Workers’ experiences

Lynch - 20 years of Growth of Palliative Care Services in Ireland

Lynch - Introducing a Community Model of Palliative Care for Children: Family Feedback

Manfra - Babywearing as a child care tool in Pediatric Palliative Care

Martín Romero - From hospital to home: implementation of a hospital discharge checklist

Martinsen - Family needs and health technology in home-based pediatric palliative care

Mastella - “Parenting Pills”: a project proposal for parental empowerment promotion

Mauss - Meeting the individual needs of pupils in pediatric palliative situation

Menotti - Ultrasound guided long peripheral cannula: a pain control device in pediatric patients

Milani - Quality of sleep in caregivers of children eligible for Pediatric Palliative Care

Moody - Enrollment Barriers on a Palliative Care Communication Trial for Parents of Children with Cancer

Moriconi - Guilt in caregivers of pediatric cancer and its associations with meaning-making processes

Morsellino - Tracheostomy decision-making in pediatric palliative care: systematic review of qualitative research

Navarro Vilarrubì - Palliakid: Comprehensive Paediatric Palliative Care Approach

Navarro-Mingorance - High-Flow Oxygen In Patients with Acute Respiratory Failure in a Pediatric Palliative Care Unit

Navarro-Mingorance - Organ donation in home-based Pediatric Palliative Care, is it possible?

Nebáznivá - RESPECT: Recommendations for Providing Pediatric Palliative Care to Families from Different Cultures

Nedorostek - Shifting attention of children with life-threatening illness from needs to desires

Ni Nualláin - A training curriculum to enable governance and operational arrangements: Education nurtures service

Nyström - Psychosocial support in paediatric palliative care – a teamwork

Okhuysen-Cawley - The Human Cost of the COVID-19 Pandemic: Implications for Pediatric Palliative Care Providers

Okhuysen-Cawley - The Plight of Migrant Children with Palliative Care Needs in the Americas

Pedraza - Post-traumatic growth in parents who lost a child to cancer: A multicentre survey in Switzerland

Pellegatta - Bridging Intensive and/or Palliative Care in Sma Type 1? A Case Report

Pellegatta - The Pediatric Day Hospice: a place for Pediatric Palliative Care

Pellegatta - Training caregivers to care for italian children in pediatric palliative care: single-centre study

Pellegatta - Which Minors are Eligible for Palliative Care? A Tool for the Training of Healthcare Professional

Piolatti-Luna - Complex pain case management in a 12-year old girl with a severe form of epidermolysis bullosae

Piolatti-Luna - How acces to a pediatric palliative care unit influences on the choice of place of death

Piolatti-Luna - Training Caregivers of Children with Home Invasive Mechanical Ventilation: From the ICU to Home

Pipolo - New strategies, old strategies: handling pain in an adolescent with cancer, a case report

Pipolo - Palliative sedation in pediatric patients: preliminary data from a retrospective study

Ramos-Guerrero - Characterization of resources provide PPC in LATIN AMERICA: PedPaLatam-2024 preliminary report

Reilly - Collaboration in Children's Palliative Care - Everyone Gains

Reilly - The experience of nurse managers supporting nurses caring for children at the end of life

Remawi - Nursing Role in Managing Procedural Pain; KHCC (Global Comfort Promise)

Remawi - Quality Office Role in KHCC Global Comfort Promise project

Remawi -Physician Lead Role in the Global Comfort Promise at KHCC

Riga - The challenges of the pediatrics palliative care in Kharkiv

Ruggiero - The best “quality of life” in PPC: from quality of life to quality of life relationships

Safarifard - Memory-Making Interventions in Pediatric Palliative and Bereavement Care: A Systematic Review

Santini - School inclusion of children and youth in pediatric palliative care: a retrospective study

Schmidt - KoCoN: A new horizon for children with chronic complex neurological conditions

Shrestha - "Your Presence Matters": A Journey of Pediatric Palliative Care in Nepal

Silva Di Maggio - Clinical Case: accompanying an educational center in the grief of a student

Skinner - Syringe Driver Usage in Paediatric Oncology Patients at End of Life

Skrudland - FamilieFOKUS Psycho-social support to families

Stanickova - Barriers & Opportunities for Perinatal Palliative Care: A Nation-wide Mixed-Method Study

Stanickova - Current Models of Providing Perinatal Palliative Care in 4 Perinatal Centres in the Czech Republic

Stoesslein - Experiences of parents caring for a child with a life-limiting condition in an inpatient setting

Streletskaya - Palliative care for children with neuromuscular diseases (NMD) in Kazakhstan

Talbot - Understanding sleep and mental health outcomes in parents of children with LLCs/LTIs

Tomase - End of life care utilization in pediatric oncology patients in Latvia: An observational study

Tooten - Towards appropriate advance care planning in pediatric palliative care: a medical record review

Toro-Perez - Comprehensive well-being, wish to change and concerns of children in palliative care: scale qESNA-14

Trkova - Methodology of system integration of palliative care in pediatric patients with high-grade gliomas

Váňová - There's always a way… to play. Insight into the diary of a child life specialist in palliative care

Vemuri - Shepherding parents in end-of-life decision-making for children with life-limiting conditions

Voelzke - ePROMs for symptom assessment in pediatric palliative home care

Voloshchuk - The impact of the war in Ukraine on pediatric palliative care: a study from our center

Voloshchuk - The realities of children's hospice in Ukraine with challenges and opportunities

Woolley - A project to develop, implement and evaluate a blended learning model in paediatric palliative care

Woolley - Access to 24/7 telephone advice from specialist paediatric palliative care nurses improves choice

Zubková - Utilizing Virtual Reality to Alleviate Anxiety in Severely Ill Pediatric Patients