Published literature
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support InterventionMichelson K, Frader J, Charleston E, Rychlik K, Aniciete D, Ciolino J, Sorce L, Clayman M, Brown M, Fragen P, Malakooti M, Derrington S, White D · Pediatr Crit Care Med · 2020
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
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 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
Communication of Death in the Context of Infant-Child Donation: Best Practices for Creating Family Interview for Organ and Tissue Donationda Silva Knihs N, Santos J, Schuantes Paim S, Pestana Magalhaes A, Erbs Pessoa J, Ramos S, Schirmer J, Bittencourt I, Albuquerque Bezerra H, Reis Bellaguarda M, Lima da Silva E · Transplantation Proceedings · 2020
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
Discussing Serious NewsFlint H, Meyer M, Hossain M, Klein M · The American journal of hospice & palliative care · 2017
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research AgendaClark J, Baden H, Berkman E, Bourget E, Brogan T, Di Gennaro J, Doorenbos A, McMullan D, Roberts J, Turnbull J, Wilfond B, Lewis-Newby M · Front Pediatr · 2022
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
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
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
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
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
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
Longitudinal understanding of prognosis among adolescents with cancerFisher R, Kenney A, Fults M, Manring S, Rodriguez E, Desjardins L, Rausch J, Young-Saleme T, Ranalli M, Vannatta K, Compas B, Gerhardt C · Pediatr Blood Cancer · 2021
'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
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot StudyMichelson K, Charleston E, Aniciete D, Sorce L, Fragen P, Persell S, Ciolino J, Clayman M, Rychlik K, Jones V, Spadino P, Malakooti M, Brown M, White D · Am J Crit Care · 2020
Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey DataJaaniste T, Chin W, Tan S, Cuganesan A, Coombs S, Heaton M, Cowan S, Potter D, Aouad P, Smith P, Trethewie S · J Pediatr Psychol · 2021
Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral centerBaker J, Rai S, Liu W, Srivastava K, Kane J, Zawistowski C, Burghen E, Gattuso J, West N, Althoff J, Funk A, Hinds P · Journal of Palliative Medicine · 2009
Racial and Ethnic Differences in Communication and Care for Children With Advanced CancerMack J, Uno H, Twist C, Bagatell R, Rosenberg A, Marachelian A, Granger M, Glade Bender J, Baker J, Park J, Cohn S, Fernandez J, Diller L, Shusterman S · Journal of Pain and Symptom Management. · 2020
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancerSansom-Daly U, Wiener L, Darlington A, Poort H, Rosenberg A, Weaver M, Schulte F, Anazodo A, Phillips C, Sue L, Herbert A, Mack J, Lindsay T, Evans H, Wakefield C, Global Adolescent and Young Adult Cancer Accord End-of-Life Study G · PLoS ONE [Electronic Resource] · 2022
Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in ChildrenBergstraesser E, Thienprayoon R, Brook L, Fraser L, Hynson J, Rosenberg A, Snaman J, Weaver M, Widger K, Zernikow B, Jones C, Schlögl M · J Palliat Med · 2021
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