Published literature
A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of lifeGreenfield K, Holley S, Schoth D, Harrop E, Howard R, Bayliss J, Brook L, Jassal S, Johnson M, Wong I, Liossi C · Palliative Medicine. · 2020
An interprofessional team-based intervention to address barriers to initiating palliative care in pediatric oncology: a multiple-method evaluation of feasibility, acceptability, and impactWalter J, Hill D, Schall T, Szymczak J, Parikh S, DiDomenico C, Carroll K, Nye R, Feudtner C · J Pain Symptom Manage · 2021
A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation studyNamisango E, Murtagh F, Bristowe K, Downing J, Powell R, Atieno M, Sandham M, Ali Z, Meiring M, Mwangi-Powell F, Abbas M, Fraser L, Higginson I, Harding R · Health & Quality of Life Outcomes · 2025
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
CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youthGorter J, Amaria K, Kovacs A, Rozenblum R, Thabane L, Galuppi B, Nguyen L, Strohm S, Mahlberg N, Ley A, Marelli A · BMJ Open · 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
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
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
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
Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnessesAng F, Cheung Y, Gandhi M, Malhotra R, Ostbye T, Malhotra C, Chow C, Chong P, Amin Z, Tan T, Finkelstein E · Journal of Patient Reported Outcomes · 2025
Discussing Serious NewsFlint H, Meyer M, Hossain M, Klein M · The American journal of hospice & palliative care · 2017
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 care in paediatric settings: UK national surveyBedendo A, Papworth A, Beresford B, Phillips B, Vasudevan C, Lake Walker G, Weatherly H, Feltbower R, Hinde S, Hewitt C, Murtagh F, Noyes J, Hackett J, Hain R, Oddie S, Subramanian G, Haynes A, Fraser L · BMJ supportive & palliative care · 2025
Evaluating Curricular Modules in the Care of Children with Medical Complexity: A Mixed-Methods Randomized Controlled TrialHuth K, Audcent T, Long-Gagne S, Sbrocchi A, Weiser N, Miller D, Arje D, Major N, Issa K, Cohen E, Orkin J · Academic Pediatrics · 2018
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
Exploring the Palliative Care Needs of Children in Refugee Settlements in UgandaDowning J, Santiago T, Opia V, Oziti G, Namukwaya E, Nabirye L, Maku S, Nalutaaya F, Bagasha P, Smith C, Ikong H, Venkatesh C, Howarth K, McGeough K, Grant L, Leng M · Palliative Medicine · 2023
Feasibility, acceptability and potential efficacy of the pediatric family-based dignity therapy for children with advanced cancer: A pilot studyWu Y, Tian Z, Deng C, Yan J, Huang K, Wang Z, Zhou X, Liu H, Cai S, Zheng R, Guo Q · Asia-Pacific Journal of Oncology Nursing · 2025
Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case ManagersSlater P, Hastings Y, Nicholson J, Noyes M, Benitez L, Pollock K, Peacock R, Cox A, Gunning R, Caris K, Petersen D, Henry C, Spanner R, Beckett K, Chisholm C · The Australian journal of rural health · 2023
Goals of Care Among Parents of Children Receiving Palliative CareFeudtner C, Beight L, Boyden J, Hill D, Hinds P, Johnston E, Friebert S, Bogetz J, Kang T, Hall M, Nye R, Wolfe J · JAMA pediatrics · 2023
Ideal Timing and Perceived Barriers for Palliative Care Integration for Children with Cancer in ChinaRuixin W, Xuan Z, Siyu C, Sun C, Garcia-Quintero X, Anan Z, Xiangling H, Weihong Z, Jie H, Hao Z, Job G, Devidas M, Weiwei Z, Xianjing W, Ping Z, Yanhua Y, Baker J, McNeil M · Journal of pain and symptom management · 2026
Increasing Pediatric Palliative Care Consultation for Patients with Heart Disease and Prolonged Cardiac Intensive Care StayHeadrick A, Wawrzynski S, Moore J, Winder M, Masih J, De Leon Jauregui M, Flaherty B, Moresco B, Millar M, Codden R, Moore D, Delgado-Corcoran C · Pediatric Quality & Safety · 2025
Influence of multi-party consultations on child involvement in clinical encounters: An observational study of paediatric palliative careEkberg S, Danby S, Pitt E, Ekberg K, Watts J, Weinglass L, Bluebond-Langner M, Langner R, Bradford N, Yates P, Fleming S, Delaney A, Duffield J, Herbert A · Patient Education and Counseling · 2026
Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancerSutherland-Foggio M, Olsavsky A, Skeens M, Nahata L, Hill K, Schaefer M, Himelhoch A, Kenney A, Humphrey L, Olshefski R, Gerhardt C · Palliative & supportive care · 2024
Navigating the complex landscape of childhood dementia: caregiver psychological well-being, grief, and health system challengesNevin S, Kelada L, Elvidge K, Maack M, Hilton G, Kershaw J, Ros E, Briggs N, Farrar M, Wakefield C · Journal of Pediatric Psychology · 2026
Parental Grief and Bereavement: Exploring the Impact of Collaboratively Created Films on Audience MembersBurke J, Checo G, Agarwal A, Hawley B, Scheunemann L, Grassmyer C, Hackwelder T, Leinbach M, Pentz M, Weber A, Indralingam R, Baumann S · Health Promotion Practice · 2026
Perinatal palliative care in low- and middle-income countries: a scoping reviewRent S, Titchiner D, Rholl E, Lyle A, Diego E, North K, Rahiem S, Garmon A, Gaffur R, Shayo A, Diez Recinos A, Lemmon M, Docherty S · Annals of palliative medicine · 2024
Physician Perceptions of and Barriers to Pediatric Palliative Care for Children with Cancer in BrazilMcNeil M, Godfrey A, Loggetto P, De Oliveira Junior A, Job G, Boldrini E, Regina Costa Murra G, Antunes Geronutti Ayub D, Francisco Oliveira De Lima A, Esmeraldo Andrade De Almeida A, Lopes Garcia J, Beatriz Costa Neves Do Amaral A, Cristina Cunha Ferreira E, Friedrich P, Metzger M, Devidas M, Agulnik A, Baker J · JCO Global Oncology · 2023
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
Quality of care collaborative for paediatric palliative care in Australia (QuoCCA)Herbert A, Irving H, Pedersen L, Baggio S, Delaney A, Donovan L, McLarty A, Duc J, Slater P, Johnson S, Trethewie S, Ryan S, Hynson J, Duffield J, Fleming S, Heywood M, Phillips M, Momber S, Burr C · Pediatric Blood and Cancer · 2017
Regret and unfinished business in parents bereaved by cancer: A mixed methods studyLichtenthal W, Roberts K, Catarozoli C, Schofield E, Holland J, Fogarty J, Coats T, Barakat L, Baker J, Brinkman T, Neimeyer R, Prigerson H, Zaider T, Breitbart W, Wiener L · Palliative Medicine · 2020
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
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 Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic ReviewWeaver M, Mooney-Doyle K, Kelly K, Montgomery K, Newman A, Fortney C, Bell C, Spruit J, Kurtz Uveges M, Wiener L, Schmidt C, Madrigal V, Hinds P · J Palliat Med · 2019
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
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
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