Published literature
Accurate empathy: Mapping and navigating the world of adolescent loss, grief, and traumaCounseling Adolescents through Loss, Grief, and Trauma by Pamela A. Malone. New York, NY: Routledge, 2016. 184 pp. (ISBN: 978-041587055). $44.95 (paperback)Phiri S, Tweya H, van Lettow M, Rosenberg N, Trapence C, Kapito-Tembo A, Kaunda-Khangamwa B, Kasende F, Kayoyo V, Cataldo F, Stanley C, Gugsa S, Sampathkumar V, Schouten E, Chiwaula L, Eliya M, Chimbwandira F, Hosseinipour M · J Acquir Immune Defic Syndr. · 2017
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 meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatmentsFrance E, Uny I, Turley R, Thomson K, Noyes J, Jordan A, Forbat L, Caes L, Silveira Bianchim M · Cochrane Database of Systematic Reviews · 2023
Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan AfricaChinyundo K, Casas J, Bank R, Abenawe C, Gaolebale B, Nakirulu A, Maifale-Mburu G, Hesselgrave J, Butia M, Bakulumpagi D, Nassanga I, Higgins J, Hockenberry M · J Pain Symptom Manage · 2022
Dignity in the Pediatric Population: A Systematic ReviewSilverstein A, Easton V, Barrows C, Sawyer K, Coughlin R, Mali N, Kessler A, Robinson M, Sirrine E, Spears M, Wrigley J, Baker J, Kaye E · Journal of pain and symptom management · 2024
Early Versus Late Pediatric Palliative Care in Oncology: A Systematic Review of Outcomes, Disparities, and Implementation BarriersRezaei F, Salamat F, Vejdani H, Moslemi Najarcolaie F, Gharibi Z, Shirali R, Okhli A, Esmi A, Kordian A · Galen Medical Journal · 2025
Effectiveness of psychological interventions for children eligible for pediatric palliative care: systematic review and meta-analysisAlvarez-Perez Y, Duarte-Diaz A, Rivero-Santana A, Abrante-Luis A, Carreras B, Infante-Ventura D, Ramos-Garcia V, Herrera-Ramos E, Marrero Gomez J, Torres-Castano A, Perestelo-Perez L · BMC pediatrics · 2026
Effectiveness of psychological interventions for parents of children eligible for paediatric palliative care: a systematic review and meta-analysisAlvarez-Perez Y, Duarte-Diaz A, Rivero-Santana A, Abrante-Luis A, Carreras B, Infante-Ventura D, Ramos-Garcia V, Torres-Castano A, Herrera-Ramos E, Marrero Gomez J, Perestelo-Perez L · Frontiers in Psychology · 2026
Electronic nursing documentation in paediatric palliative care: a scoping reviewBeghe A, Mancin S, Cacciapaglia E, Piccolomini G, Trombetta M, Bonotti G, Tognetti E, Cattani D, Dacomi A, Lopane D, Crippa C, Coldani C, Tomaiuolo G, Iadeluca A, Mazzoleni B · International journal of palliative nursing · 2025
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
Ethical challenges for a new generation of early-phase pediatric gene therapy trialsIyer A, Saade D, Bharucha-Goebel D, Foley A, Averion G, Paredes E, Gray S, Bonnemann C, Grady C, Hendriks S, Rid A · Genetics in Medicine · 2021
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
Executive Summary of Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of LifeDerrington S, Broden Arciprete E, Lin M, Oczkowski S, Alladin A, Anani U, Borchik A, Collins C, Delgado-Corcoran C, Dickerman M, Harrod C, Henner N, Kon A, Lewis-Newby M, Lord B, Masters A, McCarthy S, Moynihan K, Munoz-Blanco S, Rissman L, Roberts K, Schlegel A, Schopen A, Siegel L, Swasey H, Wawrzynski S, Zorko D, DeCourcey D · Pediatric Critical Care Medicine · 2026
Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science reviewNicholas Dionne-Odom J, Hooker S, Bekelman D, Ejem D, McGhan G, Kitko L, Str�mberg A, Wells R, Astin M, Metin Z, Mancarella G, Pamboukian S, Evangelista L, Buck H, Bakitas M, Hooker S, Metin Z, Pamboukian S, Buck H · Heart Failure Reviews
First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic reviewPollock D, Bailey H, Hasanoff S, Munn Z, Valenzuela C, Stern C, Price C, Marriott R, Gliddon J, Lewis C, Michie C, Bowie M, Penny M, Reibel T, Warland J, Farrant B, White S, Shepherd C · Women & Birth · 2024
How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature ReviewMayland C, Sunderland K, Taylor P, Powell P, Turner N, Cox V, Gillman C, Cooper M, Zeigler L, Flemming K, Fraser L · Palliative Medicine · 2022
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
Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available toolsMayland C, Sunderland K, Cooper M, Taylor P, Powell P, Zeigler L, Cox V, Gilman C, Turner N, Flemming K, Fraser L · Palliat Med · 2022
Opioids in Palliative CareSalazar-Trujillo N, Torres-Méndez R, Molina-Covarrubias J · Opioids: Pharmacology, Abuse, and Addiction · 2022
Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: A systematic reviewGallagher K, Chant K, Parisi V, Patel M, Dunbar H, Paize F, Bertaud S, Agyepong A, Mancini A, Bluebond-Langner M, Marlow N · Archives of Disease in Childhood: Fetal and Neonatal Edition · 2025
Palliative CareWasilewski-Masker K, Howk T, Connelly E, Postovsky S, Brill P, Wrammert K, Pillai R · Pediatric Oncology · 2017
Patient, Caregiver, and Clinician Participation in Prioritization of Research Questions in Pediatric Hospital MedicineGill P, Bayliss A, Sozer A, Buchanan F, Breen-Reid K, De Castris-Garcia K, Green M, Quinlan M, Wong N, Frappier S, Cowan K, Chan C, Arafeh D, Anwar M, Macarthur C, Parkin P, Cohen E, Mahant S, Canadian Pediatric Inpatient Research Network (PIRN) · JAMA Network Open · 2022
Pediatric CardiomyopathiesLee T, Hsu D, Kantor P, Towbin J, Ware S, Colan S, Chung W, Jefferies J, Rossano J, Castleberry C, Addonizio L, Lal A, Lamour J, Miller E, Thrush P, Czachor J, Razoky H, Hill A, Lipshultz S · Circ Res · 2017
Pediatric Palliative Care Program Implementation in LMICs: A Systematic Review using SWOT AnalysisKenneson S, Hughes-Visentin A, Wrigley J, Gujral P, Lodhi S, Phadke S, Rayala S, Gentica X, Malipeddi D, Sarvode S, Kaye E, Doherty M · J Pain Symptom Manage · 2023
Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats AnalysisKenneson S, Hughes-Visentin A, Doherty M, Kaye E, Wrigley J, Gujral P, Lodhi S, Phadke S, Rayala S, Gentica X, Malipeddi D, Sarvode S · Palliative Medicine · 2023
Perinatal palliative careMartín-Ancel A, Pérez-Muñuzuri A, González-Pacheco N, Boix H, Espinosa Fernández M, Sánchez-Redondo M, Cernada M, Couce M · An Pediatr (Engl Ed) · 2022
Programs to Support Pediatric to Adult Healthcare Transitions for Youth with Complex Care Needs and their Families: A Scoping ReviewDoucet S, Splane J, Luke A, Asher K, Breneol S, Pidduck J, Grant A, Dionne E, Scott C, Keeping-Burke L, McIsaac J, Gorter J, Curran J · Child: Care, Health and Development
Quality Measures for End-of-Life in Children with Heart Disease: A Modified Delphi ApproachJohnston E, Tefera R, Nyamao T, Martinez I, Bhayani S, Mendoza E, Ananth P, Whittle S, Sadler E, James K, Moynihan K, Bhatia S, Asch S · Journal of Pain and Symptom Management · 2026
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
Research Priorities in Pediatric Palliative CareBaker J, Levine D, Hinds P, Weaver M, Cunningham M, Johnson L, Anghelescu D, Mandrell B, Gibson D, Jones B, Wolfe J, Feudtner C, Friebert S, Carter B, Kane J · Journal of Pediatrics · 2015
Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of LifeDerrington S, Broden Arciprete E, Lin M, Oczkowski S, Alladin A, Anani U, Borchik A, Collins C, Delgado-Corcoran C, Dickerman M, Harrod C, Henner N, Kon A, Lewis-Newby M, Lord B, Masters A, McCarthy S, Moynihan K, Munoz-Blanco S, Rissman L, Roberts K, Schlegel A, Schopen A, Siegel L, Swasey H, Wawrzynski S, Zorko D, DeCourcey D · Pediatric Critical Care Medicine · 2026
The AAP Resilience in the Face of Grief and Loss CurriculumSerwint J, Bostwick S, Burke A, Church A, Gogo A, Hofkosh D, King M, Linebarger J, McCabe M, Moon M, Osta A, Rana D, Sahler O, Smith K, Rivera F, Baldwin C · Pediatrics. · 2016
The Bucharest international European Society for Organ Transplantation consensus on paediatric controlled donation after circulatory determination of deathWeiss M, Siebelink M, Cavazzoni E, Figini M, Kazzaz Y, Nadalin S, Nakagawa T, Scales A, Dominguez-Gil B, Oniscu G, Cillo U, Martin D · Transplant International · 2026
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
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
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
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
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