Congress Report
Report
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 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
Working session 2: Caregivers and Family
Moderators: Stefan J. Friedrichsdorf, Danai Papadatou
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
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
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 – Verna Hendricks-Ferguson
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
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
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
Bereavement in pediatrics: the experience of the nurses of an Italian pediatric hospital – Federico Pellegatta
State-of-play in pediatric palliative care in Luxembourg: an exploratory mixed methods study – Micha 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 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
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
The use of social media for sharing information on PPC needs: a social media analysis – Sofia 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 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
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
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
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
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
Holder - Barriers and facilitators to paediatric palliative care referral: a scoping review of the evidence
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
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