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 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
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
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
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
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
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
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