Oral Abstract Presentations

THURSDAY, 26^TH MAY 2022 – Day 1

Working session 1: Education and Training

Moderators: Myra Bluebond-Langner & Poh-Heng Chong

• PARENT (PArents REsources maNagement Training): an innovative training program for caregivers of long term ventilated children with rare diseases – Anna Zanin
• An ongoing educational program approach in building a children’s palliative care network – Marco Bolognani
• Implementing skills in pediatric palliative care: training of the multidisciplinary team of a Pediatric Hospice in Italy – Federico Pellegatta
• Tell me and I forget, teach me and I may remember, involve me and I learn – Michelle Meiring

Working session 2: Symptoms

Moderators: Finella Craig & Julie Hauer

• Calming dysautonomic storm in children – Aurora Madrid Rodríguez
• Evaluating agreement between children and proxy measures of symptoms via the Memorial Symptom Assessment Scale (MSAS) – Anna-Karenia Anderson
• Neuropathic pain in patients with cancer attended by a paediatric palliative care unit – Íñigo de Noriega
• Gastrointestinal symptoms. Prevalence and treatment in a pediatric palliative care population from a Latin American country – Mercedes Bernadá

Working session 3: Mothers and Family

Moderators: Alex Mancini & Daniel Garros

• The mental health of mothers of children with a life-limiting condition; a comparative cohort study – Lorna Fraser
• The physical health of mothers of children with a life-limiting condition; a comparative cohort study – Lorna Fraser
• Dynamics of grief in parents during their child’s end-of-life: A qualitative study – Eline Kochen
• Parental well-being and quality of life after losing a child due to a life-limiting diagnosis: A nationwide survey in Denmark – Camilla Lykke

Working session 4: Quality of Life

         Moderators: Emma Beecham & Momcilo Jankovic

• Quality of life and family impact of a life threatening condition on caregivers of children receiving palliative care – María de los Ángeles Dallo Campos
• The meaning of ‘normality’ among children and young people with life-limiting or life-threatening conditions – Debbie Braybrook
• What defines high quality care? Parental perspectives on key services and behaviors delivered by health care providers of seriously ill young children: A constructivist grounded theory study – Felicia Jia Ler Ang
• Series on Quality of Life for Children with Cancer: Improving palliative care health literacy among parents and caregivers – Ximena Garcia

Working session 5: Organisation, Planning and Implementation

     Moderators: Julia Downing & Lorna Fraser

• Developing a new hospital-based pediatric palliative care programme: analysis of critical components – Martin Loucka
• Opportunities and challenges of a shared paediatric palliative care team in two hospitals – Sarmila Lalbahadoersing-Jharap & Suzanne Hofman
• On the road of pediatric palliative care…from an integrated care pathway for children with complex chronic condition (CCC) to a complete home based program (HBP). AUSL Bologna experience – Elisa Mazzoni

 Working session 6: Miscellaneous

   Moderators: Huda Abu Saad & Marcello Orzalesi

• Medical complexity and care intensity on a pediatric palliative care hospital ward – Sophie Stoesslein
• Is the Family Talk Intervention feasible in pediatric oncology? An evaluation of a family-based psychosocial intervention – Malin Lövgren
• DAT – Direction to Anticipated care plan in Time: experience of a Regional Pediatric Palliative Care Network – Caterina Agosto

 Les Amis D’Antonio Lefebvre D’Ovidio Young Researchers Abstract – winning abstract

   Sport in Pediatric Palliative Care – Irene Avagnina

FRIDAY, 27^TH MAY 2022 – Day 2

Working session 7: The Child

Moderators: Linda Brook  & Michelle Meiring

• Do we really share decision-making for children with life-limiting conditions? – Sid Vemuri
• Advanced care planning to Protect The Wishes of the child and family – Irene Avagnina
• What do young people with life-limiting conditions want professionals to know about transition? – Archana Soman
• What are the beliefs of healthcare professionals on the role of non-invasive ventilation in children with chronic respiratory failure and life-limiting conditions? – Fiona Healy

Working session 8: Drugs, Pain & Sedation

Moderators: Stefan J. Friedrichsdorf & Ana Lacerda

• Evaluation of polypharmacy in paediatric hospice users – Veronica Neefjes
• Sedation at the end of life in patients treated by Paediatric Palliative Care Teams. Multicentre observational study – Maria José Peláez Cantero
• Exploring palliative sedation therapy (PST) practices among pediatric palliative care and pain medicine physicians – Andrea Cuviello
• POP UP: Pediatric off-label and polypharmacy use in palliative care – Fernando Baratiri

Working session 9: Ethics and Spirituality

Moderators: Richard Bauer & Justin N. Baker  

• Analysis of the spirituality, religiosity and life philosophy of parents of children with palliative needs – Pau Miquel Diego
• Selected ethical issues in palliative care for children – Marketa Kralovcova & Jiri Kralovec
• Parental ethical decision making and the implications for advanced care planning: results of a systematic review and secondary analysis of qualitative literature – Veronica Neefjes

FRIDAY, 27^TH MAY 2022 – Day 2 – Afternoon

                  Working session 10: Siblings

                  Moderators: Mercedes Bernadà & Amy Volans

• Family bonding as a result of the Family Talk intervention in pediatric oncology – siblings’ experiences – Kerstin Ivéus
• “We don’t know what’s happening because we’re not there”- What matters to siblings of children with serious illness? – Anna Roach
• The family impact of caring For children with severe neurological impairment – John Allen
• Support needs of siblings of children with Metachromatic leukodystrophy, the parents’ experiences – Torun Marie Vatne

         Working session 11: Perinatal/Neonates

         Moderators: Daniel Garros & Tara Kerr-Elliot

• End-of-life decisions in neonates: a comprehensive overview of estimates, views and experiences based on three recently finished studies – Laure Dombrecht
• Integration of palliative care in the pediatric cardiac intensive care unit: An added layer of support for patients, families and staff – Priya Bhat
• ​A case of Mitchell Riley Syndrome: when the team’s work is winning! – Anna Nardella
• “Collateral beauty”. Experiences and needs of medical and non-medical professionals caring for parents continuing pregnancy after life-limiting prenatal fetal diagnosis: A grounded theory study – Konstanze Wiesner

         Working session 12: Innovation proposals/interventions

                  Moderators: Marijke Kars & Poh-Heng Chong

• Making sense of words: the way to a better integration between pediatric oncology and pediatric palliative care – Lucia De Zen
• Elise’s legacy library: An online mindfulness tool for pediatric patients, caregivers, and providers – Claire Crawford & Marial Biard
• Listening to the stories of the war in Ukraine to guide a response to the needs of children and staff in children’s palliative care. The importance of social media platforms as a means to communicate – Joan Marston
• VOICE (Virtual Online vs In-presence Communication Educational) Project – Anna Santini