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
Advance Care Planning for Children With Rare Diseases: A Pilot RCTLyon M, Fraser J, Thompkins J, Clark H, Brodie N, Detwiler K, Torres C, Guerrera M, Younge T, Aoun S, Trujillo Rivera E · Pediatrics · 2024
A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planningLyon M, D'Angelo L, Dallas R, Hinds P, Garvie P, Wilkins M, Garcia A, Briggs L, Flynn P, Rana S, Cheng Y, Wang J · AIDS care · 2017
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
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
Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative CareMoynihan K, Cashen K, Daughtrey H, Delgado-Corcoran C, Robinson L, Ting J, Flores S, Beshish A, Chlebowski M, Batsis M, Pryce P, Asfari A, Sznycer-Taub N, Karki K, Wakeham M, Ohman R, Shutes B, Narasimhulu S, Schramm J, Strelow F, Reddy R, Loomba R, Wong J, Werho D, Capone C, Schneider J, Leong K, Kulikowska A, Elgersma K, Prentice E, Reddy C, Leopold S, Mills K, Mastropietro C · Pediatrics · 2026
Discussing Serious NewsFlint H, Meyer M, Hossain M, Klein M · The American journal of hospice & palliative care · 2017
End-of-life practices among tertiary care PICUs in the United States: A multicenter studyMeert K, Keele L, Morrison W, Berg R, Dalton H, Newth C, Harrison R, Wessel D, Shanley T, Carcillo J, Clark A, Holubkov R, Jenkins T, Doctor A, Dean J, Pollack M · Pediatric Critical Care Medicine · 2015
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
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
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
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
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
Guidance on forgoing life-sustaining medical treatmentWeise K, Okun A, Carter B, Christian C, Katz A, Laventhal N, MacAuley R, Moon M, Opel D, Statter M, Davies D, Dell M, Diekema D, Klipstein S, Elster N, Rivera F, Feudtner C, Boss R, Hauer J, Humphrey L, Klick J, Linebarger J, Parker S, Lord B, Imaizumi S, Guinn-Jones M, Flaherty E, Gavril A, Idzerda S, Laskey A, Legano L, Leventhal J, Fortson B, MacMillan H, Stedt E, Hurley T · Pediatrics · 2017
Impact of Specialized Pediatric Palliative Care on Bereaved Parents' Mental and Physical HealthDelgado-Corcoran C, Meeks H, Wawrzynski S, Markovitz B, Harman B, Masih J, Li K, Harousseau M, Moore D, Wilkes J, Ames S · Journal of Pain and Symptom Management · 2026
Integrating Electronic Patient-Reported Outcomes and Palliative Care in Pediatric Advanced Cancer: The PediQUEST Response Multisite Randomized Controlled TrialDussel V, Orellana L, Requena M, Avery M, Becker D, Ullrich C, Feudtner C, Freedman J, Kang T, Waldman E, Gerhardt C, Bakitas M, Baker J, Friedrichsdorf S, Rosenberg A, Wolfe J · Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2026
Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data RepositoryMeghani S, Mooney-Doyle K, Barnato A, Colborn K, Gillette R, Harrison K, Hinds P, Kirilova D, Knafl K, Schulman-Green D, Pollak K, Ritchie C, Kutner J, Karcher S · Journal of Pain and Symptom Management · 2024
Leveraging User Experience Design Expertise in Palliative Care Intervention ScienceHawley C, Alcantra N, Chen C, Feng Y, Lattimore K, Oh S, Rajeeva B, Robinson F, Shenbanjo M, Oslin E, Bogetz J · Journal of Palliative Medicine · 2026
Life Duration of Pediatric Patients with Cancer Enrolled on Concurrent Hospice Care: A Retrospective Decedent StudyWeaver M, Jalfon R, Zeng E, Kalyanasundaram S, Kaye E, Salek M, Cowfer B, Johnson L, Mamer T, Mandrell B, Lindley L, Levine D · Journal of Palliative Medicine · 2026
Long length of hospital stay in children with medical complexityGold J, Hall M, Shah S, Thomson J, Subramony A, Mahant S, Mittal V, Wilson K, Morse R, Mussman G, Hametz P, Montalbano A, Parikh K, Ishman S, O'Neill M, Berry J · Journal of Hospital Medicine · 2016
Medication Order Errors at Hospital Admission Among Children With Medical ComplexityBlaine K, Wright J, Pinkham A, O'Neill M, Wilkerson S, Rogers J, McBride S, Crofton C, Grodsky S, Hall D, Mauskar S, Akula V, Khan A, Mercer A, Berry J · J Patient Saf · 2022
Neuropsychological assessments in a large cohort of pediatric palliative epilepsy surgery patientsJeno M, Koop J, Gabriel M, Caraway A, Novotny E, Patrick K, Gonzalez-Giraldo E, Auguste K, Ostendorf A, McNally K, Alexander A, Berrios-Servios G, Eschbach K, Bolton J, Ailion A, Singh R, Wong-Kisiel L, Zaccariello M, Tatachar P, Duong P, Depositario-Cabacar D, Berl M, Sepeta L, Karakas C, Karia S, Mohapatra L, Rowmanowski E, McNamara N, Hodges E, Shrey D, Hennrick H, Olaya J, Arredondo K, DeLeon R, Reddy S, Molnar A, Javarayee P, Park S, Coryell J, Olsen E, Bearden D, Winston M, Samanta D, Armstrong D, Wolf S, McGoldrick P, Marashly A, Grinspan Z, Nangia S, Perry M, Ciliberto M · Epilepsy and Behavior · 2026
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
Palliative CareWasilewski-Masker K, Howk T, Connelly E, Postovsky S, Brill P, Wrammert K, Pillai R · Pediatric Oncology · 2017
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
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
Place of death of children with complex chronic conditions: cross-national study of 11 countriesHakanson C, Ohlen J, Kreicbergs U, Cardenas-Turanzas M, Wilson D, Loucka M, Frache S, Giovannetti L, Naylor W, Rhee Y, Ramos M, Teno J, Beernaert K, Deliens L, Houttekier D, Cohen J · European Journal of Pediatrics. · 2017
Practice patterns of palliative radiation therapy in paediatric oncology patients amongst an international paediatric research consortiumRao A, Ermoian R, Alcorn S, Figueiredo M, Chen M, Dieckmann K, MacDonald S, Ladra M, Kobyzeva D, Nechesnyuk A, Nilsson K, Winey B, Villar R, Terezakis S · Pediatric Blood and Cancer · 2016
Prevalence and Trajectory of Household Material Hardship Among Children With Advanced CancerWright S, Paul M, Mendez S, Jones E, Lokko L, Heneghan C, Purol N, Arnold M, Aziz-Bose R, Kelly C, Pruitt S, Wolfe J, Bona K, Umaretiya P · Pediatric Blood and Cancer · 2026
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
Quality of Care in the Last Two Years of Life for Children with Complex Chronic ConditionsBogetz J, Strub B, Bradford M, McGalliard J, Shipman K, Jeyte A, Patneaude A, Johnston E, Ananth P, Thienprayoon R, Rosenberg A · Journal of pain and symptom management · 2024
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
Race, Ethnicity, and Social Determinants of Health in PICU Mode of Death: Single-Center Retrospective Cohort StudyAlladin A, Pfeiffer B, Nino P, Mosal S, Nares M, Alba-Sandoval M, Solano J, Gelman B, Cantwell G, Jeyapalan A · Critical Care Explorations · 2026
Racial Disparities in Palliative Care at End-of-life in Children with Advanced Heart Disease in the SouthTurner H, Davis E, Martinez I, Anshumani S, Boresino S, Buckingham S, Caudill C, Dai C, Mendoza E, Moynihan K, Puttock L, Tefera R, Bhatia S, Johnston E · The Journal of Pediatrics · 2024
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
Social Determinants of Health And End-Of-Life Circumstances in A Quaternary Children's HospitalJamieson T, Liu J, Goldberg S, Ting J, Fox M, Rosenberg A, Heneghan C, Kwan S, Schicho F, Vitali S, Kheir J, Johnston E, Thiagarajan R, Weller E, Ward V, Moynihan K · Journal of pain and symptom management · 2026
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 association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncologyWithycombe J, McFatrich M, Pinheiro L, Hinds P, Keller F, Baker J, Mack J, Sung L, Waldron M, Reeve B · Quality of Life Research · 2019
Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative CareLeiter R, Bischoff K, Carey E, Gelfand S, Iyer A, Jain N, Kramer N, Lally K, Landzberg M, Lever N, Newport K, O`Donnell A, Patel A, Sciacca K, Snaman J, Tulsky J, Rosa W, Lakin J · Journal of Palliative Medicine
Transfusion Use Among Children with Hematologic Malignancies Receiving Concurrent Hospice CareWeaver M, Jalfon R, Liang J, Mamer T, Johnson L, Kaye E, Salek M, Cowfer B, Superdock A, Li Y, Levine D · Journal of Pain & Symptom Management · 2026
UnspokenLalisan A, Woodman K, Silverstein A · Journal of pain and symptom management · 2025
Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures as Clinical Trial Endpoints: Experience from a Multicenter Pragmatic Trial in Children with Crohn’s DiseaseMiller T, Schuchard J, Carle A, Forrest C, Kappelman M, Adler J, Ammoury R, Bass D, Bass J, Benkov K, Bousvaros A, Boyle B, Cabrera J, Colletti R, Dorsey J, Ebach D, Firestine A, Gulati A, Hoffenberg E, Jester T, Kaplan J, Kugathasan S, Kusek M, Leibowitz I, Linville T, Margolis P, Minar P, Rios Z, Moses J, Palomo P, Pappa H, Pashankar D, Saeed S, Samson C, Sandberg K, Steiner S, Strople J, Sullivan J, Tung J, Wali P · The Journal of Pediatrics · 2021
Well-Child Visits of Medicaid-Insured Children with Medical ComplexityShumskiy I, Richardson T, Brar S, Hall M, Cox J, Crofton C, Peltz A, Samuels-Kalow M, Alpern E, Neuman M, Berry J · Journal of Pediatrics · 2018
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