Oral Abstract Presentations
THURSDAY, 26TH 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, 27TH 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, 27TH 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