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.
Showing 76–100 of 167 publications
A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early through EOL to i…
Applying Palliative Care Principles to Communicate With Children About COVID-19
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandc…
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention
OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared pa…
Characteristics of parental decision-making for children with advanced cancer who are offered enrollment in early-phase clinical trials: A systematic review
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-mak…
Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Pa…
Communication between neonatologists and parents when prognosis is uncertain
OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover …
Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition
Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with…
Communication in Pediatric Oncology: A Qualitative Study
BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication…
Communication of Death in the Context of Infant-Child Donation: Best Practices for Creating Family Interview for Organ and Tissue Donation
OBJECTIVE: To analyze evidence capable of supporting best practices available in the literature to create dialogues about organ and tissue donation with parents of deceased children and adolescents. METHODS: An integrative literature review performed using Sco…
Discharge Communication Practices for Children With Medical Complexity: A Retrospective Chart Review
OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and general pediatri…
End-of-life decisions in neonatal care: a conversation analytical study
OBJECTIVE: To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments. DESIGN: Formal conversations were recorded, transcribed and analysed according to the conventions and methods of conv…
Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paedi…
Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families rece…
Family meetings in paediatric palliative care: an integrative review
OBJECTIVE: Our aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature. METHOD(S): We undertook an integrative literature review informed by the Preferred Re…
Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the …
Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review
Background Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions.
Objective This study aimed to ide…
Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey
BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good pa…
Human Touch via Touchscreen: Rural nurses' experiential perspectives on telehealth use in pediatric hospice care
CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The objective of th…
'I'm praying for a miracle': characteristics of spiritual statements in paediatric intensive care unit care conferences
CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU). OBJECTIVES:…
Improving communication with parents: the Neonatal Intensive Care Unit Empathy Workshop
OBJECTIVE: To implement an "Empathy Workshop" focused on improving Neonatal Intensive Care Unit (NICU) health care provider communication skills. METHODS: Staff-led, small group "Empathy Workshops" were conducted over a 2 year period. NICU parents answered a s…
Location of Clinician-Family Communication at the End of Life in the Pediatric Intensive Care Unit and Clinician Perception of Communication Quality
Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family. Objective: We examined the current state of clinician perspective on c…
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and implement…
Neonatal palliative care: perception differences between providers
Objective: The purpose of this study was to describe differences and identify education gaps in the perception of palliative care (PC) between neonatal care providers in a Level IV Neonatal intensive care unit. Study design: This is a descriptive survey mixed …
No impact of previous evidence advocating openness to talk to children about their imminent death
Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among health…
Paediatric oncology providers' perspectives on early integration of paediatric palliative care
BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration of palliati…