Published literature
A 15-year experience in pediatric palliative care: a retrospective hospital-based studySchiavon M, Lazzarin P, Agosto C, Rusalen F, Divisic A, Zanin A, Mercante A, Mirisola V, Papa S, Giacomelli L, Benini F · BMC palliative care · 2024
Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, BelgiumFriedel M, Gilson A, Bouckenaere D, Brichard B, Fonteyne C, Wojcik T, De Clercq E, Guillet A, Mahboub A, Lahaye M, Aujoulat I · BMJ Paediatrics Open · 2019
A Dutch clinical practice guideline for paediatric palliative care: a systematic review and recommendations on psychosocial care including preloss and bereavement carevan Teunenbroek K, Mulder R, Verhagen A, Kremer L, Falkenburg J, Honig-Mazer P, van den Bergh E, Kars M, Verheijden J, Rippen H, Borggreve B, Kochen E, Michiels E, van Roosmalen T, van Wageningen N, M W, Berkhout L, Karen G, Looijestijn J, Knoester H, Haag A, Gijsbertsen-Kool A · BMC Palliative Care · 2025
A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed StudyBenini F, Mercante A, Di Nunzio S, Papa S, Agosto C, Albanesi B, Amarri S, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, De Marinis M, De Tommasi V, De Zen L, Divisic A, Dolcini A, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Iadelica A, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Mazzoni E, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, Orofino R, Paone G, Pellegatta F, Peruselli C, Piccolruaz U, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, Thaler M, Tornesello A, Uez F, Vaccher S, Vezzoli C, Zanin A, Ziggiotto S · Journal of Palliative Medicine · 2024
A new palliative and pain educational model for pediatric residentsBenini F, De Zen L, Amarri S, Bignamini E, Bolognani M, Catalano I, Jankovic M, Manfredini L, Salata M, Zanin A, Corsello A, Barbi E, Marseglia G, Baraldi E · Italian Journal of Pediatrics · 2025
Bereaved parents' perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative studyCrowe A, McCauley R, Corcoran Y, Reid J, Price J, Kiernan G, Courtney E, McConnell T, McNeilly P, Lambert V · BMC Palliat Care · 2025
Bereavement in paediatric oncology: programme evaluationPodda M, Nigro O, Barretta F, Schiavello E, Grampa P, Luksch R, Terenziani M, Ferrari A, Casanova M, Spreafico F, Meazza C, Biassoni V, Chiaravalli S, Bergamaschi L, Colombo V, Puma N, Gattuso G, Sironi G, Clerici C, Lombardi M, Forzini G, Massimino M · BMJ Supportive and Palliative Care · 2026
Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014Friedel M, Brichard B, Fonteyne C, Renard M, Misson J, Vandecruys E, Tonon C, Verfaillie F, Hendrijckx G, Andersson N, Ruysseveldt I, Moens K, Degryse J, Aujoulat I · BMC Palliat Care. · 2018
Burnout and posttraumatic stress in paediatric critical care personnel: Prediction from resilience and coping stylesRodriguez-Rey R, Palacios A, Alonso-Tapia J, Perez E, Alvarez E, Coca A, Mencia S, Marcos A, Mayordomo-Colunga J, Fernandez F, Gomez F, Cruz J, Ordonez O, Llorente A · Australian Critical Care · 2018
Caregiver Preferences for AI-Supported Telemedicine in Pediatric Palliative Care: A Discrete Choice ExperimentGodoy Junior C, Penarrubia-San-Florencio L, Ricart S, Vilarrubi S, Roure M, Ruiz-Herguido C, Valls-Esteve A, Pilli L, Uyl-de Groot C, Redekop W, Kirsten van Deen W · Journal of palliative care · 2026
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner PerspectivesScott H, Coombes L, Braybrook D, Roach A, Harardottir D, Bristowe K, Ellis-Smith C, Chambers L, Bluebond-Langner M, Farsides B, Murtagh F, Harding R · Palliative Medicine · 2022
Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needsAmarri S, Ottaviani A, Campagna A, De Panfilis L, Cortina I, Sani E, Bertolini P, Bianchi E, Caldarelli V, Poggi G, Riva M, Locatelli C, Melchionda F, Mondardini M, Soffritti S, Mazzoni E, Serra L, Gulmini L, Bertelli S, Fornaro M, Magistà A, Gabriele C, on behalf of Emilia Romagna paediatric palliative care working group · Italian Journal of Pediatrics · 2021
Children with palliative care needs - the landscape of the nordic countriesWinger A, Holmen H, Birgisdottir D, Lykke C, Lovgren M, Neergaard M, Gronroos M, Kero J, Kristinsdottir O, Petursdottir A, Castor C · BMC Palliative Care · 2024
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carersCoombes L, Braybrook D, Hardardottir D, Scott H, Bristowe K, Ellis-Smith C, Fraser L, Downing J, Bluebond-Langner M, Murtagh F, Harding R · Palliative Medicine · 2024
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nursesBucher H, Klein S, Hendriks M, Baumann-Holzle R, Berger T, Streuli J, Fauchere J, Philipp M, Roland N, Renate I, Mathias N, Liliane S, Brigitte S, Kai R, Riccardo P, Matthias R, Magali C, Ulrike S, Gudrun J, Ruth D, Jean-Claude F, Barbara D · BMC Pediatrics · 2018
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family MembersCoombes L, Harðardóttir D, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Patient · 2023
Designing and maturing the OKRA-Compass for breaking bad news in the German pediatric oncology setting: A participatory action research studyDittmer K, Vitinius F, Hamm I, Dabritz T, Hanse S, Hoemberg M, Lorenz A, Misgeld R, Paul N, Stamm W, Krieger T · Patient Education and Counseling · 2025
Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK)Braybrook D, Coombes L, Harardottir D, Scott H, Bristowe K, Ellis-Smith C, Roach A, Ramsenthaler C, Bluebond-Langner M, Downing J, Murtagh F, Fraser L, Harding R · Palliative care and social practice · 2024
End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of BelgiumAujoulat I, Henrard S, Charon A, Johansson A, Langhendries J, Mostaert A, Vermeylen D, Verellen G, Maton P, Van Overmeire B, Kalenga M, Broux I, Henrion E, Dussart A, Muller M, Cavatorta E, Marechal Y, Vanden Eijnden S, Lecart C, Haumont D, Van Herreweghe I, Vlieghe V, Debauche C, Flausch M, Sepulchre B · BMC Pediatrics · 2018
Epilepsy in Paediatric Palliative Care: Prevalence, Clinical Correlations and the Development of a Consensus-Based Seizure Management ProtocolHizanu Dumitrache M, Salim C, Plesea-Condratovici A, Mindru D, Duceac Covrig M, Elkan E, Cristescu Budala C, Gurzu I, Moraru P, Matasaru M, Matei M, Duceac L · Medicina (Kaunas, Lithuania) · 2026
Estimating national prevalence of life-limiting conditions amongst infants, children, and adolescents using administrative hospital data in the absence of a unique health identifier; evidence from IrelandSmith S, Delamere T, Fraser L, Murphy O, May P, McElligott F, Devins M, Horne T, Rabbitte M, Guerin S, O'Hara S, Dillon M, Balfe J · BMC Pediatrics · 2026
Expert survey on coverage and characteristics of pediatric palliative care in Europe - a focus on home careWager J, Kubek L, Brenner M, Calmanti S, Doyle C, Lovgren M, Kreicbergs U, Kremer L, Le Moine P, Robert G, Schuiling-Otten M, Schroder-Back P, Verhagen E, Zernikow B · BMC Palliative Care · 2022
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot StudyFriedel M, Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D, Mevisse M, Fonteyne C, Jaspard M, Schruse M, Harding R, Downing J, Namisango E, Degryse J, Aujoulat I · Journal of palliative medicine. · 2020
Feasibility of Implementing an Electronic Patient-Reported Outcome-Based Digital Health Platform in Pediatric Oncology and Palliative Care: Insights From the MyPal4Kids Multicenter Observational StudyMeyerheim M, Radova L, Burns-Gebhart A, Mergen M, Natsiavas P, Bonotis P, Karamanidou C, Payne S, Downing J, Ling J, Sander A, Mirzaie K, Dokutur S, Vaculikova J, Lokaj P, Rohleder O, Graf N · JMIR Cancer · 2026
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital databaseRevon-Riviere G, Pauly V, Baumstarck K, Bernard C, Andre N, Gentet J, Seyler C, Fond G, Orleans V, Michel G, Auquier P, Boyer L · Cancer. · 2019
''If they knew what I thought was important that would help a lot more'': Methods for involving children and young people with life-limiting and life-threatening conditions in development of a paediatric palliative care outcome measureBraybrook D, Coombes L, Roach A, Scott H, Haroardottir D, Bristowe K, Ellis-Smith C, Hills M, Maynard L, Anderson A, Namisango E, Higginson I, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2022
Implementation of Polish guidelines on futile therapy protocols in pediatric intensive care units: a multicenter retrospective reviewDamps M, Rybojad B, Byrska-Maciejasz E, Gajda M, Mierzewska-Schmidt M, Bartkowska-Sniatkowska A, Zielinska M, Kubica-Cielinska A, Pagowska-Klimek I, Aftyka A, Wiktor L, Duda I · Scientific Reports · 2026
‘I’m tired of justifying why my life has stopped’: A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavementHarrop E, Abbott Z, Hopewell-Kelly N, Goss S, Byrne C, Bayliss J, Jones K, Clabburn O, Warren R, Penny A, Leadbitter H · Palliative Care and Social Practice · 2026
Measuring Knowledge of Healthcare Providers on Pediatric Palliative Care with an Online Questionnaire Based on the National Core Curriculum in ItalyZanello E, Vecchi R, Zamagni G, Biagi M, Bruno I, Cragnolin E, Danielli E, Paoletti S, Rabusin M, Ronfani L, Pessa Valente E · Healthcare (Basel) · 2023
Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in CroatiaCurkovic M, Rubic F, Jozepovic A, Novak M, Filipovic-Grcic B, Mestrovic J, Lah Tomulic K, Peter B, Spoljar D, Grosek S, Jankovic S, Vukovic J, Kujundzic Tiljak M, Stajduhar A, Borovecki A · Frontiers in Pediatrics · 2024
Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: Results from a London cohort study and international surveyVeldhuijzen Van Zanten S, Van Meerwijk C, Jansen M, Twisk J, Anderson A, Coombes L, Breen M, Hargrave O, Hemsley J, Craig F, Cruz O, Kaspers G, Van Vuurden D, Hargrave D · Neuro-Oncology · 2016
Palliative care for children with central nervous system tumors: results of a Spanish multicenter studyPerez-Torres Lobato M, Navarro-Marchena L, de Noriega I, Morey Olive M, Solano-Paez P, Rubio Perez E, Garrido Colino C, Garcia Abos M, Tallon Garcia M, Huidobro Labarga B, Portugal Rodriguez R, Lopez Ibor B, Lassaletta A, Morgenstern Isaak A, Cruz Martinez O, Valero Arrese L, Llort Sales A, Gros Subias L, Marquez Vega C, Moreno L, Quiroga-Cantero E · Clinical and Translational Oncology · 2023
Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditionsHaroardottir D, Coombes L, Braybrook D, Scott H, Roach A, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Laddie J, Hills M, Ramsenthaler C, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2023
Patterns of paediatric end-of-life care: A chart review across different care settings in SwitzerlandZimmermann K, Cignacco E, Engberg S, Ramelet A, von der Weid N, Eskola K, Bergstraesser E, Ansari M, Aebi C, Baer R, Popovic M, Bernet V, Brazzola P, Bucher H, Buder R, Cagnazzo S, Dinten B, Dorsaz A, Elmer F, Enriquez R, Fahrni-Nater P, Finkbeiner G, Frey B, Frey U, Greiner J, Hassink R, Keller S, Kretschmar O, Kroell J, Laubscher B, Leibundgut K, Malaer R, Meyer A, Stuessi C, Nelle M, Neuhaus T, Niggli F, Perrenoud G, Pfammatter J, Plecko B, Rupf D, Sennhauser F, Stade C, Steinlin M, Stoffel L, Thomas K, Vonarburg C, von Vigier R, Wagner B, Wieland J, Wernz B · BMC Pediatrics · 2018
Pediatric advance care planning: a mixed-methods evaluation of documentation and sharing in current practiceTooten S, Hermens R, Verhoeven M, Vierhoven E, Boulakhrif F, Reintjes J, Willemsen M, Aris-Meijer J, Fahner J, Engel M, Kars M, Ahout I, Deuning-Smit E · BMC Palliative Care · 2026
Pediatric palliative care in patients with brain tumors: Timing, activation, and management of acute eventsNigro O, Podda M, Schiavello E, Biassoni V, Luksch R, Terenziani M, Ferrari A, Spreafico F, Casanova M, Meazza C, Chiaravalli S, Puma N, Bergamaschi L, Gattuso G, Sironi G, Colombo V, Catalano I, Pellegatta F, Barretta F, Vennarini S, Forzini G, Massimino M · Tumori · 2025
Pediatric Palliative Symptom Categories for (e)PROM in specialized pediatric palliative home careHocher R, Ruthke N, Busse T, Ghori S, Krumpelmann S, Messerschmidt C, Nathrath M, Vaillant V, Voelker T, Voelzke A, Zimmermann J, Deckers M · Journal of pain and symptom management · 2026
Place of death of children with complex chronic conditions: cross-national study of 11 countriesHakanson C, Ohlen J, Kreicbergs U, Cardenas-Turanzas M, Wilson D, Loucka M, Frache S, Giovannetti L, Naylor W, Rhee Y, Ramos M, Teno J, Beernaert K, Deliens L, Houttekier D, Cohen J · European Journal of Pediatrics. · 2017
Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care CenterZanin A, Baratiri F, Roverato B, Mengato D, Pivato L, Avagnina I, Maghini I, Divisic A, Rusalen F, Agosto C, Venturini F, Benini F · Children · 2024
Posttraumatic growth in pediatric intensive care personnel: Dependence on resilience and coping strategiesRodriguez-Rey R, Palacios A, Alonso-Tapia J, Perez E, Alvarez E, Coca A, Mencia S, Marcos A, Mayordomo-Colunga J, Fernandez F, Gomez F, Cruz J, Baron L, Calderon R, Belda S · Psychol Trauma. · 2017
Project Baby Panther -assessment of the implementation of the rapid Whole Genome Sequencing as routine diagnostic toll for critically ill neonates and children in AustriaZaminer M, Schreiner E, Bierbaumer S, Blatterer J, Hammer S, Kaufmann L, Kuhberger S, Tichy H, Wagner-Skacel J, Holter M, Eber E, Wagner K, Verheyen S · European Journal of Human Genetics · 2025
Raising Awareness: Real World Data On Palliative Care for Advanced Pediatric Cancers in BavariaNehls N, Börner M, Ziegelmayer S, Haller B, Klot F, Metzler M, Frühwald M, Schlegel P, Corbacioglu S, Feuchtinger T, Lüttichau I · Pediatric Blood & Cancer · 2025
Rapid response in the COVID-19 pandemic: a Delphi study from the European Pediatric Dialysis Working GroupEibensteiner F, Ritschl V, Ariceta G, Jankauskiene A, Klaus G, Paglialonga F, Edefonti A, Ranchin B, Schmitt C, Shroff R, Stefanidis C, Walle J, Verrina E, Vondrak K, Zurowska A, Stamm T, Aufricht C · Pediatric Nephrology · 2020
Subcutaneous Drug Administration in Pediatric Palliative Home Care: A Multicenter Prospective StudyRiva de la Hoz B, de Miguel M, Gorbe C, Tristancho-Perez A, Garcia-Palop B, Corro B, Nogue-Pujadas E, Bosch-Peligero M, Zurbano R, Yunquera-Romero L, Garcia-Lopez I · Journal of Pain & Symptom Management · 2026
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric studyHully M, Barnerias C, Chabrol B, Vuillerot C, Sabouraud P, Cuisset J, Cances C, Ropars J, Rivier F, Isapoff A, Desguerre I · Developmental Medicine and Child Neurology · 2019
Survival and causes of death in extremely preterm infants in the Netherlandsvan Beek P, Groenendaal F, Broeders L, Dijk P, Dijkman K, van den Dungen F, van Heijst A, van Hillegersberg J, Kornelisse R, Onland W, Schuerman F, van Westering-Kroon E, Witlox R, Andriessen P · Arch Dis Child Fetal Neonatal Ed · 2020
Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home CareZimmermann J, Heilmann M, Fisch-Jessen M, Hauch H, Kruempelmann S, Moeller H, Nagel L, Nathrath M, Vaillant V, Voelker T, Deckers M · Children · 1315
The Impact of Qualification and Hospice Education on Staff Attitudes during Palliative Care in Pediatric Oncology Wards-A National SurveySalamon E, Fodor E, Foldesi E, Hauser P, Krivan G, Csanadi K, Garami M, Kovacs G, Csoka M, Tiszlavicz L, Kiss C, Dergez T, Ottoffy G · Children · 2024
The rights of the dying child and the duties of healthcare providers: the "Trieste Charter"Benini F, Vecchi R, Lazzarin P, Jankovic M, Orsi L, Manfredini L, Drigo P, Sellaroli V, Gangemi M, Spizzichino M, Orzalesi M · Tumori · 2017
The use of drugs with a life-shortening effect in end-of-life care in neonates and infantsProvoost V, Cools F, Bilsen J, Ramet J, Deconinck P, Vander Stichele R, Vande Velde A, Van Herreweghe I, Mortier F, Vandenplas Y, Deliens L · Intensive Care Medicine · 2006
Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illnessNamisango E, Friedel M, Yurdusen S, Alrjoub W, Braybrook D, Alarjeh G, Roach A, Boufkhed S, Farsides B, Coombes L, Harding R · Palliative medicine · 2025
Training Healthcare Assistants for School-Based Care of Children Receiving Paediatric Palliative Care: A Post-Training EvaluationSantini A, Marinetto A, Grigolon E, Fasson A, Schiavon M, D'Angelo I, Moro N, Roverato B, Lazzarin P, Benini F · Children (Basel, Switzerland) · 2026
Understanding Sleep Challenges in Pediatric Palliative Care: A Patient-Focused Scoping Review and Implications for PracticeVarallo G, Mercante A, Baldini V, Gnazzo M, Testoni C, Benini F, Amarri S, Scorza M, Rubichi S, Pizza F, Plazzi G · J Clin Med · 2026
What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholdersScott H, Coombes L, Braybrook D, Hardardottir D, Roach A, Bristowe K, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Ellis-Smith C, Harding R · Palliative Medicine · 2024
What matters to children and families facing advanced cancer? Identification of priority outcomes to improve paediatric palliative care in Turkey and JordanBoufkhed S, Yurdusen S, Alarjeh G, Ahmed F, Alrjoob W, Sengelen M, Cemaloglu M, Aydin B, Kutluk T, Shamieh O, Harding R · Palliative Medicine · 2021
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