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Published literature

Publications

Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.

This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.

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Showing 1–7 of 7 publications

Improved Quality of Life in Children and Families Following Enrollment in a Pediatric Palliative Care Program: A Prospective Cohort Study
Guadarrama-Orozco J, Mendoza-Martinez M, Bautista-Tellez S, Yanez-Maldonado P, Mendoza-de-la-Vega K, Castilla-Peon M · Children (Basel, Switzerland) · 2026 · DOI: 10.3390/children13020196
Background/Objectives: Pediatric palliative care seeks to relieve suffering and improve the quality of life of children with severe conditions and their families. This prospective cohort study assessed changes in quality of life following enrollment in a pedia…
The AmericasMexicoOncologyCohort StudyIntervention EvaluationQuantitative
Palliative Care Service Needs of Children with Complex Chronic Conditions in a Hospital-to-Home Transition Unit: Insights from an Underserved Population
Rocha A, Mendes P, Mauricio L, Henrique E, Crispim D · Palliative Medicine Reports · 2026 · DOI: 10.1177/26892820251409582
Introduction: Children with complex chronic conditions (CCC) represent an increasingly prevalent and vulnerable group in pediatric care, accounting for a substantial proportion of hospital admissions and health care expenditures worldwide. These children frequ…
The AmericasBrazilChildren with Medical ComplexityNeeds AssessmentCohort StudyQuantitative
Goals of Care Rated by Parents of Children Receiving Pediatric Palliative Care: A Cohort Study Over Two Years (RP409)
Feudtner C, Beight L, Boyden J, Hill D, Hinds P, Johnston E, Friebert S, Hays R, Kang T, Hall M, Nye R, Wolfe J · Journal of Pain and Symptom Management · 2022 · DOI: 10.1016/j.jpainsymman.2022.04.050
Outcomes 1. Illustrate the value of assessing the importance that parents of children with serious illness place on several goals of care 2. Argue for respectful and routine reassessment of parents’ goals of care for their children with serious illness Importa…
Pain & symptom managementParents/CaregiversCohort StudyQuantitative
The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
Nye R, Hill D, Carroll K, Boyden J, Katcoff H, Griffis H, Campos D, Hall M, Wolfe J, Feudtner C · Journal of Pain and Symptom Management · 2022 · DOI: 10.1016/j.jpainsymman.2022.03.006
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons learned reg…
Children with Medical ComplexityPain & symptom managementCohort StudyImplementation scienceQuantitative
Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
Jones T, Olds T, Currow D, Williams M · Palliative Medicine. · 2019 · DOI: 10.1177/0269216319867214
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and qu…
AustraliaCohort Study
Changes Over Time in Good-Parent Beliefs Among Parents of Children with Serious Illness: Two Year Cohort Study (TH320B)
Hill D, Faerber J, Carroll K, Miller V, Morrison W, Hinds P, Feudtner C · Journal of Pain and Symptom Management · 2018
The AmericasUnited States of AmericaParents/CaregiversCohort Study
The 'surprise' question in paediatric palliative care: A prospective cohort study
Burke K, Coombes L, Menezes A, Anderson A · Palliat Med · 2017
EuropeUnited KingdomDeath and DyingCohort Study