Published literature
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview studyCoombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Harding R · Eur J Pediatr · 2022
A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatmentvan Teunenbroek K, Mulder R, Ahout I, Bindels-de Heus K, Delsman-van Gelder C, Galimont-Collen A, de Groot M, Heitink-Polle K, Looijestijn J, Mensink M, Mulder S, Schieving J, Schouten-van Meeteren A, Verheijden J, Rippen H, Borggreve B, Kremer L, Verhagen A, Michiels E · BMC Palliat Care · 2024
A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelinesEhrlich B, Movsisyan N, Batmunkh T, Kumirova E, Borisevich M, Kirgizov K, Graetz D, McNeil M, Yakimkova T, Vinitsky A, Ferrara G, Li C, Lu Z, Kaye E, Baker J, Agulnik A · Cancer · 2020
A qualitative study exploring the pros and cons of universal pediatric palliative care referral at diagnosis for children with cancerGranek L, Veldhuijzen van Zanten S, Lysecki D, Rapoport A, Datoo N, Hasan F, Gupta S, Wiener L, Widger K, Chan A, Kassam A, Fergus K, McCullogh E, Johnston D · Palliat Support Care · 2026
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative studyPiette V, Dombrecht L, Deliens L, Cools F, Chambaere K, Goossens L, Naulaers G, Laroche S, Cornette L, Bekaert E, Decoster P, Beernaert K, Cohen J · Palliat Med · 2022
Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countriesEhrlich B, Movsisyan N, Batmunkh T, Kumirova E, Borisevich M, Kirgizov K, Graetz D, McNeil M, Yakimkova T, Vinitsky A, Ferrara G, Li C, Lu Z, Kaye E, Baker J, Agulnik A · Cancer · 2020
Benefits of Respite Services on the Psycho-Emotional State of Families of Children Admitted to Hospice Palliative Care Unit: Preliminary Study on Parents' PerceptionsHizanu Dumitrache M, Boeriu E, Tanasescu S, Balan A, Oprisoni L, Popa M, Gutu C, Vulcanescu D, Bagiu I, Bagiu R, Dragomir T, Boru C, Avram C, Duceac L · Healthcare (Basel) · 2024
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
Best Practice in Provider/Parent InteractionDavies B, Steele R, Krueger G, Albersheim S, Baird J, Bifirie M, Cadell S, Doane G, Garga D, Siden H, Strahlendorf C, Zhao Y · Qual Health Res · 2016
Building a culture of engagement at a research centre for childhood disabilityPozniak K, Buchanan F, Cross A, Crowson J, Galuppi B, Grahovac D, Gorter J, Hlyva O, Ketelaar M, Kraus de Camargo O, Krpan Mesic M, Martens R, McCauley D, Nguyen L, Palisano R, Phoenix M, Putterman C, Rosenbaum P, Sprung J, Strohm S, Teplicky R, Thomson D, Wright M · Research Involvement and Engagement · 2021
Caregiver Values and Preferences Related to Surgical Decision-making for Children with Medical ComplexityLin J, Devereaux T, Simon T, Kaphingst K, Zhu A, Narayanan U, Berry A, Eppich K, Stoddard G, Smith J, Andras L, Heflin J, Keenan H, Asch S, Fagerlin A · The Journal of pediatrics · 2024
Caring for Critically Ill Children With Suspected or Proven Coronavirus Disease 2019 Infection: Recommendations by the Scientific Sections' Collaborative of the European Society of Pediatric and Neonatal Intensive CareRimensberger P, Kneyber M, Deep A, Bansal M, Hoskote A, Javouhey E, Jourdain G, Latten L, MacLaren G, Morin L, Pons-Odena M, Ricci Z, Singh Y, Schlapbach L, Scholefield B, Terheggen U, Tissières P, Tume L, Verbruggen S, Brierley J · Pediatr Crit Care Med · 2021
Children's visits to the paediatric intensive care unit from the nurses' experienceGonzález-Gil M, Alcolea-Cosín M, Pérez-García S, Luna-Castaño P, Torrent-Vela S, Piqueras-Rodríguez P, Gil-Domínguez S, Alonso-Lloret F, Belda-Holfheinz S, Sánchez-Díaz J, Espinosa-Bayal M · Enferm Intensiva (Engl Ed) · 2021
Clinical Reasoning Behind Antibiotic Use in PICUs: A Qualitative StudyFontela P, Gaudreault J, Dagenais M, Noël K, Déragon A, Lacroix J, Razack S, Rennick J, Quach C, McNally J, Carnevale F, Group o · Pediatric Critical Care Medicine · 2022
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
Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative studyAlarjeh G, Boufkhed S, Alrjoub W, Guo P, Yurdusen S, Ahmed F, Abdal-Rahman M, Alajarmeh S, Alnassan A, Al-Awady S, Kutluk T, Harding R, Shamieh O · Frontiers in Oncology · 2023
Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and familiesKaye E, Woods C, Kennedy K, Velrajan S, Gattas M, Bilbeisi T, Huber R, Lemmon M, Baker J, Mack J · British Journal of Cancer · 1089
Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and familiesKaye E, Woods C, Kennedy K, Velrajan S, Gattas M, Bilbeisi T, Huber R, Lemmon M, Baker J, Mack J · Br J Cancer · 2021
Communication Barriers and Facilitators to Specialist Pediatric Palliative Care Involvement in Pediatric Oncology Settings Across CanadaGranek L, Veldhuijzen van Zanten S, Widger K, Wiener L, Johnston D, Hasan F, Datoo N, Fergus K, Chan A, Kassam A, Lysecki D, McCullogh E, Gupta S, Rapoport A · Psycho-Oncology · 2026
Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious IllnessPorter A, Zalud K, Applegarth J, Woods C, Gattas M, Rutt E, Williams K, Baker J, Kaye E · JAMA network open · 2021
COVID-19: Impact on Pediatric Palliative CareScott H, Coombes L, Braybrook D, Roach A, Hardardottir D, Bristowe K, Ellis-Smith C, Higginson I, Gao W, Bluebond-Langner M, Farsides B, Murtagh F, Fraser L, Harding R · Journal of Pain and Symptom Management. · 2022
Customized pediatric palliative care: Integrating oncological and palliative care prioritiesPodda M, Schiavello E, Visconti G, Clerici C, Armiraglio M, Casiraghi G, Ambroset S, Grossi A, Rizzi B, Lonati G, Massimino M · Acta paediatrica (Oslo, Norway : 1992) · 2020
Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative reviewCrowe A, Hurley F, Kiernan G, Kerr H, Corcoran Y, Price J, Reid J, Courtney E, McConnell T, McNeilly P, Lambert V · BMC palliative care · 2025
Defining Roles in Pediatric Palliative Care: Perspectives From Oncology and Palliative Care TeamsGranek L, Wiener L, van Zanten S, Johnston D, Hasan F, Rapoport A, Datoo N, Widger K, Gupta S, Fergus K, Chan A, Kassam A, McCullogh E, Lysecki D · Pediatric Blood and Cancer · 2026
Definition and Assessment of Paediatric Breakthrough Pain: A Qualitative Interview StudyDawson E, Greenfield K, Carter B, Bailey S, Anderson A, Rajapakse D, Renton K, Mott C, Hain R, Harrop E, Johnson M, Liossi C · Children (Basel) · 2024
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
Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measureAng F, Gandhi M, Ostbye T, Malhotra C, Malhotra R, Chong P, Amin Z, Chow C, Tan T, Tewani K, Finkelstein E · BMC Palliative Care · 2024
Diversity of Parent Emotions and Physician Responses During End-of-Life ConversationsPrins S, Linn A, van Kaam A, van de Loo M, van Woensel J, van Heerde M, Dijk P, Kneyber M, de Hoog M, Simons S, Akkermans A, Smets E, de Vos M · Pediatrics · 2023
Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, BangladeshYantzi R, Hadiuzzaman M, Sen Gupta P, Lamrous A, Richardson K, Pringle J, Schwartz L, Hossain P, Kizito D, Burza S · PLoS One · 2023
Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectivesThibault L, Bourque C, Gaucher N, Marano M, Couture K, Saad L, Chartrand C, Fregeau S, Dore-Bergeron M, Fiscaletti M, Kleiber N · Paediatrics and Child Health (Canada) · 2024
Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and disseminationPostier A, Wolfe J, Hauser J, Remke S, Baker J, Kolste A, Dussel V, Bernadá M, Widger K, Rapoport A, Drake R, Chong P, Friedrichsdorf S · J Pain Symptom Manage · 2021
End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United KingdomPapworth A, Hackett J, Beresford B, Murtagh F, Weatherly H, Hinde S, Bedendo A, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hain R, Subramanian G, Haynes A, Fraser L · NIHR open research · 2022
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
Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendationsŠpoljar D, Janković S, Vrkić D, McNamara G, Ćurković M, Novak M, Filipović-Grčić B, Grosek S, Gastmans C, Gordijn B, Borovečki A · BMC Palliative Care · 2025
Experience-based co-design informed development of a toolbox to help optimise primary care support during transition from children's hospice care: HOPSCOTCH study protocolChapman E, Mitchell S, Fraser L, Wozencroft J, Morris B, Peat G, Charles T, Elverson J, Carder P, Tallowin K, Magnusson J, Ziegler L · BMJ Open · 2025
Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative SynthesisNgwenya N, Kenten C, Jones L, Gibson F, Pearce S, Flatley M, Hough R, Stirling L, Taylor R, Wong G, Whelan J · J Adolesc Young Adult Oncol · 2017
Experiences in Coping with Stress-A Qualitative Study of Family Caregivers of Children with Medical ComplexityLayshock M, Porter A, Bogetz J, McLachlan L, Weill S, Rosenberg A, Winger J, Houtrow A, Noll R, Schenker Y, Yu J · Children (Basel) · 2024
Experiences of medical traumatic stress in parents of children with medical complexityDewan T, Birnie K, Drury J, Jordan I, Miller M, Neville A, Noel M, Randhawa A, Zadunayski A, Zwicker J · Child: Care, Health and Development · 2023
Experiencing acute genomic care: perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencingMackley M, Dickson M, Szuto A, Anderson J, Chitayat D, Hayeems R, Mendoza-Londono R, Ng E, Offringa M, Wang Y, Ly L, Chad L · European Journal of Human Genetics · 2026
Exploring challenges and opportunities in paediatric bereavement care: a qualitative study from a tertiary care hospital in PakistanHussain H, Altaf S, Khalid A, Hashmi S, Rehman N, Bharuchi V, Rahman F, Shafi A, Syed A, Fadoo Z, Mushtaq N, Resham S · BMC palliative care · 2026
Exploring Pediatric Oncology Care Practices Influencing the Relationships Among Children, Caregivers, and Health Care Providers: A Multi-Institutional Study From PakistanResham S, Altaf S, Ayub F, Bhatti A, Syed A, Iqbal R, Tul Quanita A, Vitória Ramos de Oliveira C, Fadoo Z, Mushtaq N, Imam U, Raza M, Yousafzai A · JCO global oncology · 2025
Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory studyActis Danna V, Lavender T, Laisser R, Chimwaza A, Chisuse I, Kasengele C, Kimaro D, Kuzenza F, Lyangenda K, Mwamadi M, Shayo H, Tuwele K, Wakasiaka S, Bedwell C · Women & Birth · 2023
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
Facilitating Milk Donation in the Context of Perinatal Palliative CareCole J, Schwarz J, Farmer M, Coursey A, Duren S, Rowlson M, Prince J, Oser M, Spatz D · Journal of obstetric, gynecologic, and neonatal nursing : JOGNN · 2018
Family Conferences in Prenatal Palliative CareBernardes L, Oliveira F, Jesus R, Benute G, Gibelli M, Nascimento N, Bolibio R, Barbosa T, Setubal M, Gomes A, Rocha L, Rosa G, Francisco R · Journal of palliative medicine. · 2020
From mourning to memorialising - A lasting connection through remembrance: The role of memory making in preserving the identity of parenthood amongst women who have suffered a perinatal bereavementPayne E, Silverio S, Fellows R, Heywood L, Burgess K, Storey C, Oza M, Kent-Nye F, Haddad L, Sampson A, Knighting K · Women & Birth · 2025
Future roles of artificial intelligence in early pain management of newbornsSalekin M, Mouton P, Zamzmi G, Patel R, Goldgof D, Kneusel M, Elkins S, Murray E, Coughlin M, Maguire D, Ho T, Sun Y · Paediatric and Neonatal Pain
Grief and growth in bereaved siblings: Interactions between different sources of social supportHoward Sharp K, Russell C, Keim M, Barrera M, Gilmer M, Foster Akard T, Compas B, Fairclough D, Davies B, Hogan N, Young-Saleme T, Vannatta K, Gerhardt C · School Psychology Quarterly · 2018
Healthcare professionals' perspectives of providing end-of-life care for infants, children and young people in acute settings: A multi-site qualitative studyMcLorie E, Hackett J, Barrett L, Peat G, Weatherly H, Hinde S, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hewitt C, Hain R, Subramanian G, Haynes A, Papworth A, Fraser L, Murtagh F · Palliative medicine · 2025
Home-based palliative care for children with recurrent and/or refractory central nervous system tumourYanagisawa T, Tomonari S, Kohei F, Masayoshi Y, Wataru O, Kentaro Y, Masaharu A, Ai M, Yuichiro N, Junichi A, Kazuhiko M, Ryo N · Pediatric Blood and Cancer · 2016
How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative studyAkkermans A, Lamerichs J, Schultz M, Cherpanath T, van Woensel J, van Heerde M, van Kaam A, van de Loo M, Stiggelbout A, Smets E, de Vos M · Palliative Medicine. · 2021
How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive careSpijkers A, Akkermans A, Smets E, Schultz M, Cherpanath T, van Woensel J, van Heerde M, van Kaam A, van de Loo M, Willems D, de Vos M · Intensive Care Medicine · 2022
''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
Impact of Caring for Terminally Ill Children on Physicians: A Systematic Scoping ReviewNgiam L, Ong Y, Ng J, Kuek J, Chia J, Chan N, Ho C, Abdurrahman A, Kamal N, Cheong C, Ng C, Tan X, Tan L, Chin A, Mason S, Jumat M, Chiam M, Krishna L · American Journal of Hospice and Palliative Care · 2020
Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case studyWong F, Ho J, Lai T, Lee L, Ho E, Lee S, Chan S, Fung C, Ho A, Li C, Li C, Chiu A, Tsui K, Lam K · Archives of Disease in Childhood · 2023
‘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
Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.Snaman J, Kaye E, Spraker-Perlman H, Levine D, Clark L, Wilcox R, Barnett B, Sykes A, Lu Z, Cunningham M, Baker J · The American journal of hospice & palliative care · 2018
International consensus on sleep problems in pediatric palliative care: Paving the wayMercante A, Owens J, Bruni O, Nunes M, Gringras P, Li S, Papa S, Kreicbergs U, Wolfe J, Zernikow B, Lacerda A, Benini F, Li A, Wolfson A, Marinetto A, Santini A, Zanin A, Kuhn B, Angelhoff C, Santos C, Goh D, Verrillo E, Zhou E, Ferreira E, Bergstraesser E, Pizza F, Nilsson F, Plazzi G, Wang G, Traslaviña G, Moreira G, Siden H, Hauch H, Huijer H, Catalano I, Narang I, Avagnina I, Lopez J, Wille J, Mindell J, Bogetz J, Downing J, Hauer J, Streuli J, Baker J, Spruyt K, Chan K, Soster L, Oliveira L, Ragsdale L, Nobili L, Matlen L, Nosetti L, De Zen L, Strambi L, Stenmarker M, Lopes M, Blankenburg M, Rios M, Bernadá M, Farquhar M, Frühwald M, Gradisar M, Simakajornboon N, Lazzarin P, Chong P, Ferri R, Martino-Alba R, Findling R, Ferreira R, Bin-Hasan S, Kudchadkar S, Mercadante S, Amarri S, Keenan S, Noce S, de Oliveira Iglesias S, Fagondes S, Suh S, Sheldon S, Sejersen T, Ceranoglu T, Crabtree V, Castronovo V · Sleep Medicine · 2024
International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCSBenini F, Pappadatou D, Bernadá M, Craig F, De Zen L, Downing J, Drake R, Freidrichsdorf S, Garros D, Giacomelli L, Lacerda A, Lazzarin P, Marceglia S, Marston J, Muckaden M, Papa S, Parravicini E, Pellegatta F, Wolfe J · J Pain Symptom Manage · 2022
Interpersonal relationships after prenatal diagnosis of congenital heart disease: Social stressors and supportsMarshall E, Gramszlo C, Perez Ramirez A, Kazak A, Shillingford A, Ortinau C, Kelly S, Kasparian N, Edwards L, Divanovic A, Davis J, Butler S, Braley K, Riegel E, Sood E · Journal of Perinatology · 2025
Involving Nonspeaking and Speaking Children in Clinical Encounters: An Observational Study of Real-World Clinical EncountersEkberg S, Danby S, Watts J, Weinglass L, Cooke R, Nelson M, Pitt E, Ekberg K, Bluebond-Langner M, Langner R, Bradford N, Yates P, Delaney A, Duffield J, Orr A, Fleming S, Scully M, Ryan S, Herbert A · Journal of paediatrics and child health · 2026
"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancerAvery J, Geist A, D'Agostino N, Kawaguchi S, Mahtani R, Mazzotta P, Mosher P, al-Awamer A, Kassam A, Zimmermann C, Samadi M, Tam S, Srikanthan A, Gupta A · Journal of Oncology Practice · 2020
Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with CancerMandrell B, Gattuso J, Pritchard M, Caples M, Howard Sharp K, Harrison L, Ouma A, Valdez J, Johnson L, Nichols K · Seminars in Oncology Nursing · 2021
Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program DevelopmentMiller E, Weaver M, Ragsdale L, Hills T, Humphrey L, Williams C, Morvant A, Pitts B, Waldman E, Lotstein D, Linebarger J, Feudtner C, Klick J · Journal of Palliative Medicine · 2020
'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening conditionBristowe K, Braybrook D, Scott H, Coombes L, Harðardóttir D, Roach A, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Murtagh F, Harding R · Palliat Med · 2024
'My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own ConditionBristowe K, Braybrook D, Scott H, Coombes L, Harardottir D, Roach A, Ellis-Smith C, Fraser L, Downing J, Murtagh F, Harding R · Palliative Medicine · 2023
Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practiceBroden Arciprete E, Michelson K, Feder S, Marr J, Al-Roub N, Gouda S, Jones A, Schopen A, Tapper A, Pasek T, Kelly R, Morris L, Olszewski A, Gallagher C, Taylor J, McCarthy S, Snaman J, Ananth P · Intensive & critical care nursing · 2026
Oral morphine versus transmucosal diamorphine for breakthrough pain in children: methods and outcomes: UK (DIPPER study) consensusHarrop E, Liossi C, Jamieson L, Gastine S, Oulton K, Skene S, Howard R, Johnson M, Boyce K, Mitchell L, Jassal S, Anderson A, Hain R, Hills M, Bayliss J, Soman A, Laddie J, Vickers D, Mellor C, Warlow T, Wong I · BMJ Support Palliat Care · 2021
Pain Squad+ smartphone app to support real-time pain treatment for adolescents with cancer: protocol for a randomised controlled trialJibb L, Nathan P, Breakey V, Fernandez C, Johnston D, Lewis V, McKillop S, Patel S, Sabapathy C, Strahlendorf C, Victor J, Moretti M, Nguyen C, Hundert A, Cassiani C, El-Khechen Richandi G, Insull H, Hamilton R, Fang G, Kuczynski S, Stinson J · BMJ Open · 2020
Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' UnderstandingSadasivan A, Warrier M, Polavarapu K, Preethish-Kumar V, Nair M, Keerthipriya M, Vengalil S, Sagar J, Kishore T, Nalini A, Thomas P · Indian J Palliat Care · 2021
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping reviewVig P, Lim J, Lee R, Huang H, Tan X, Lim W, Lim M, Lee A, Chiam M, Lim C, Baral V, Krishna L · BMC Palliat Care · 2021
Parents' decision-making for their foetus or neonate with a severe congenital heart defectDelaney R, Pinto N, Ozanne E, Brown H, Stark L, Watt M, Karasawa M, Patel A, Donofrio M, Steltzer M, Miller S, Zickmund S, Fagerlin A · Cardiol Young · 2022
Parents' experiences of paediatric end-of-life care in the UK: a multisite qualitative studyPeat G, McLorie E, Barrett L, Weatherly H, Hinde S, Lake Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hewitt C, Hain R, Subramanian G, Haynes A, Fraser L, Murtagh F, Hackett J · BMJ supportive & palliative care · 2025
Parents’ experiences of the financial and employment impacts of their child receiving end-of-life care: a national qualitative studyBarrett L, Peat G, McLorie E, Weatherly H, Hinde S, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hewitt C, Hain R, Subramanian G, Haynes A, Murtagh F, Hackett J, Fraser L · BMC Palliative Care · 2025
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
Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with CancerMack J, Fisher L, Kushi L, Chao C, Vega B, Rodrigues G, Josephs I, Brock K, Buchanan S, Casperson M, Cooper R, Fasciano K, Kolevska T, Lakin J, Lefebvre A, Schwartz C, Shalman D, Wall C, Wiener L, Altschuler A · JAMA Network Open · 2021
Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With CancerOdejide O, Fisher L, Kushi L, Chao C, Vega B, Rodrigues G, Josephs I, Brock K, Buchanan S, Casperson M, Cooper R, Fasciano K, Kolevska T, Lakin J, Lefebvre A, Schwartz C, Shalman D, Wall C, Wiener L, Altschuler A, Mack J · JCO Oncology Practice · 2022
Physicians' Perspectives and Attitudes Toward Palliative Care for Cancer Children in mainland ChinaZhang A, Zhou X, Wang J, Sun C, Garcia-Quintero X, Li X, Mu D, Ma L, Han Y, Zhang F, Zhang H, Zhu X, Job G, Devidas M, Mo L, Sun Y, Wang R, Tuo Y, Yao Y, Shen C, Duan F, Zhang B, Cai S, Baker J, MichaelMcNeil J · Journal of pain and symptom management · 2025
Pictures as mementos after perinatal death: a case studyJesus R, Benute G, Bertolassi N, Barbosa T, Bolibio R, Figueiredo F, Setubal M, Gibelli M, Gomes A, Ferreira R, Francisco R, Bernardes L · International Journal of Palliative Nursing · 2022
Preferences for Communication About Prognosis Among Children With Cancer, Parents, and OncologistsChristianson C, Reeves C, Farner H, Mehler S, Brinkman T, Baker J, Hinds P, Mack J, Kaye E · JAMA Network Open · 2025
Priorities for Nutrition Research in Pediatric Critical CareTume L, Valla F, Floh A, Goday P, Jotterand Chaparro C, Larsen B, Lee J, Moreno Y, Pathan N, Verbruggen S, Mehta N · JPEN J Parenter Enteral Nutr · 2019
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative studyPapworth A, Hackett J, Beresford B, Murtagh F, Weatherly H, Hinde S, Bedendo A, Walker G, Noyes J, Oddie S, Vasudevan C, Feltbower R, Phillips B, Hain R, Subramanian G, Haynes A, Fraser L · BMC Palliative Care · 2023
Research priorities for childhood chronic conditions: a workshop reportLopez-Vargas P, Tong A, Crowe S, Alexander S, Caldwell P, Campbell D, Couper J, Davidson A, De S, Fitzgerald D, Haddad S, Hill S, Howell M, Jaffe A, James L, Ju A, Manera K, McKenzie A, Morrow A, Odgers H, Pinkerton R, Ralph A, Richmond P, Shaw P, Singh-Grewal D, van Zwieten A, Wake M, Craig J · Archives of Disease in Childhood · 2018
Scoping Review on Transitions in the Context of Pediatric Palliative CareChampagne E, Chenard J, Simard C, Bonanno M, Bogossian A, Roberge V, Olivier-D'Avignon M, Ummel D, Fortin G, Bergeron F, Bonenfant F · Journal of Palliative Medicine · 2024
Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parentsSchütze D, Engler F, Ploeger C, Ulrich L, Hach M, Seipp H, Kuss K, Bösner S, Gerlach F, van den Akker M, Erler A, Engler J · BMJ Supportive & Palliative Care · 2022
Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year periodZernikow B, Szybalski K, Hubner-Mohler B, Wager J, Paulussen M, Lassay L, Jorch N, Weber C, Schneider D, Janssen G, Oommen P, Kuhlen M, Brune T, Wieland R, Schundeln M, Kremens B, Langler A, Prokop A, Kiener R, Niehues T, Rose M, Baumann-Kohler M, Poppelmann M, Thorer H, Irnich M, Sinha K, Wolfe J, Schmidt P · Palliative Medicine · 2018
Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literatureRobert R, Stavinoha P, Jones B, Robinson J, Larson K, Hicklen R, Smith B, Perko K, Koch K, Findley S, Weaver M · Pediatric Blood and Cancer · 2019
Supporting parent capacity to manage pain in young children with cancer at home: Co-design and usability testing of the PainCaRe appJibb L, Liu W, Stinson J, Nathan P, Chartrand J, Alberts N, Hashemi E, Masama T, Pease H, Torres L, Cortes H, Kuczynski S, Liu S, La H, Fortier M · Paediatric and Neonatal Pain · 2024
Symptom management care pathway adaptation process and specific adaptation decisionsVettese E, Sherani F, King A, Yu L, Aftandilian C, Baggott C, Agarwal V, Nagasubramanian R, Kelly K, Freyer D, Orgel E, Bradfield S, Kyono W, Roth M, Klesges L, Beauchemin M, Grimes A, Tomlinson G, Dupuis L, Sung L · BMC cancer · 2023
Systems Theory Model to Understand the Barriers and Facilitators to Palliative Care Referral for Pediatric Oncology Patients in CanadaGranek L, Hasan F, Lysecki D, Johnston D, Veldhuijzen van Zanten S, Datoo N, Gupta S, Chan A, Wiener L, Widger K, McCullogh E, Kassam A, Fergus K, Rapoport A · JCO oncology practice · 2026
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
“Their suffering also plagues us”: a narrative ethnographic exploration of humanitarian healthcare workers’ moral experiences of providing pediatric palliative care in Cox’s Bazar, BangladeshYantzi R, Burza S, Hunt M, Wahoush O, Moll S, Hossain P, Hadiuzzaman M, Richardson K, Lamrous A, Rahman G, Sen Gupta P, Sagrado M, Schwartz L · Journal of International Humanitarian Action · 2026
Themes in the Management of Pediatric Brain Death Contestation: Exploratory Qualitative Work From Multidisciplinary Health Professionals in the United StatesAndrist E, Firn J, Kirschen M, Sederstrom N, Kon A, Fowler J, Wolfe A, McIlroy M, Kiragu A, Morrison W, Tegtmeyer K, Agarwal K, Pope T, Vercler C, Winiarski D, McGowan N, Leber S, Carroll C, Flori H · Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2025
The spiritual needs and care of children and young people with life-threatening or life-shortening conditions, and parents (SPARK): a mixed-method investigationBeresford B, Richardson N, Mukherjee S, Nye R, Aldridge J, Atkin K, Clayton M, Gibson F, Hackett J, Hain R, Arshad M, Nash P, Phillips B · Health & Social Care Delivery Research · 2025
Towards new perspectives: International consensus guidance on dystonia in pediatric palliative careMercante A, Nardocci N, Fernandez-Alvarez E, Lumsden D, Hauer J, Bernada M, Drake R, Kreicbergs U, Palomo-Carrion R, Gemma M, Coubes P, Fasano A, Lin J, Benini F · European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society · 2025
Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative studyNamisango E, Bristowe K, Murtagh F, Downing J, Powell R, Abas M, Lohfeld L, Ali Z, Atieno M, Haufiku D, Guma S, Luyirika E, Mwangi-Powell F, Higginson I, Harding R · Palliative Medicine · 2020
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
Treatment Decision Making at Diagnosis for Children Presenting With Advanced Cancer in Low- and Middle-Income CountriesSalek M, Caceres-Serrano A, Canedo J, Fuentes L, Mehler S, Rule A, Zeal J, Rodriguez-Galindo C, Graetz D, Bhakta N, Kaye E, Group C, Baker J, Dolendo M, Figueredo D, Force L, Friedrich P, Geriga F, Gunasekera S, Hunleth J, Kizyma R, Maradiege E, Kim Nguyen H, Nzamu I, Raza M, Rustamova K, Sari N, Wise P · JCO Global Oncology · 2026
Types of Challenges and Barriers in Accessing Paediatric Palliative Care in Romania: A Qualitative Study Based on Focus Groups Guided by a Semi-Structured Discussion GuideHizanu Dumitrache M, Stafie L, Plesea-Condratovici A, Mindru D, Salim C, Elkan E, Duceac Covrig M, Matei M, Dinu C, Duceac L · Medicina (Kaunas, Lithuania) · 2025
Unseen, Unrelenting, and Uncertain: Caregiver-Identified Targets for Pediatric Palliative CarePorter A, Layshock M, Bogetz J, McLachlan L, Weill S, Snaman J, Houtrow A, Noll R, Rosenberg A, Schenker Y, Yu J · Journal of Pain and Symptom Management · 2025
Using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) in a community setting: Does it facilitate best interests decision-making?Eli K, Bernstein C, Harlock J, Huxley C, Walsh J, Blanchard H, Hawkes C, Perkins G, Turner C, Griffiths F, Slowther A · Journal of Medical Ethics: Journal of the Institute of Medical Ethics · 2025
Utilizing the Metaverse to Provide Innovative Psychosocial Support for Pediatric, Adolescent, and Young Adult Patients with Rare CancerHasei J, Ishida H, Katayama H, Maeda N, Nagano A, Ochi M, Okamura M, Iwata S, Ikuta K, Yoshida S, Fujiwara T, Nakata E, Nakahara R, Kunisada T, Ozaki T · Cancers · 2024
Vaccine preventable diseases in pediatric palliative care - a multicenter cross-sectional studyVaillant V, Tretiakova I, Berthold D, Scheer M, Kimmig A, Hagenguth A, Kaestner J, Meinhardt A, Kriwy P, Wolff J, Hauch H, Tretiakowa I · Journal of Pain & Symptom Management · 2023
Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan settingZakayo S, Njeru R, Sanga G, Kimani M, Charo A, Muraya K, Sarma H, Uddin M, Berkley J, Walson J, Kelley M, Marsh V, Molyneux S · Int J Equity Health · 2020
“We decide according to the protocol”: Humanitarian Healthcare Workers’ Moral Experiences of Palliative Care-Related Decision-Making in Cox’s Bazar, BangladeshYantzi R, Hadiuzzaman M, Gupta P, Lamrous A, Richardson K, Pringle J, Schwartz L, Hossain P, Kizito D, Burza S · Prehospital & Disaster Medicine Cambridge University Press May2023 · 2023
“We’re going to get through this together”: patient, parent, and oncologist recommendations for providing emotional support in advanced childhood cancerChristianson C, Mehler S, Reeves C, Farner H, Brinkman T, Baker J, Hinds P, Mack J, Kaye E · Journal of Psychosocial Oncology · 2025
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 Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and ParentsBraybrook D, Coombes L, Scott H, Harardottir D, Roach A, Bariuan J, Ellis-Smith C, Downing J, Murtagh F, Bluebond-Langner M, Fraser L, Harding R, Bristowe K · The patient · 2025
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
When a Child Dies in the PICU Despite Ongoing Life SupportLewis-Newby M, Clark J, Butt W, Dryden-Palmer K, Parshuram C, Truog R · Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2018
You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancerKenny M, Darcy-Bewick S, Martin A, Eustace-Cook J, Hilliard C, Clinton F, Storey L, Coyne I, Murray K, Duffy K, Fortune G, Smith O, Higgins A, Hynes G · J Psychosoc Oncol · 2020
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