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 1–25 of 167 publications
Culturally Informed Communication of Neonatal Death in Chinese Neonatal Intensive Care Units
This qualitative study describes the experiences of physicians and nurses about communicating with parents about neonatal death at 2 neonatal intensive care units (NICUs) in 2 hospitals in Yangzhou City, Jiangsu Province, China. Key Points: Question: What are …
Empathic Communication in Pediatric Palliative Care: A Mixed-Methods Systematic Review
Background: Effective communication between healthcare providers and parents facing their child's end of life is critical yet complex. A comprehensive synthesis of how empathic communication influences clinical and bereavement outcomes in pediatric palliative …
Navigating Time-Critical Decisions in Pediatric Critical Care: A Proactive Communication Guide for Cultivating Prognostic Awareness
Background: Clinical teams face many barriers to communicating with the parents/caregivers of patients experiencing an acute decline. Outside of these time-critical situations, clinicians often can iteratively assess and cultivate prognostic awareness of the p…
One Meeting, Three Perspectives
In this narrative medicine essay, a mother, a palliative care physician, and a hospital chaplain describe a meeting discussing a young patient’s medical options for treating his rare brain tumor.
Training programs in communication skills for healthcare professionals caring for children with life-limiting and life-threatening conditions and their families: A systematic review of healthcare professionals' behavioral impact and children's health outcomes
Background: Effective communication has potential benefits for children, their families, and healthcare professionals. Although communication skills training programs are essential for healthcare professionals, their effects remain unclear.
Aim: This review s…
An Evolutionary Concept Analysis of Pediatric Hospice and Palliative
Purpose: This study aimed to clarify the concept of pediatric hospice and palliative care through conceptual analysis. It also sought to identify the differences between related concepts such as pediatric death care and pediatric spiritual care, in order to pr…
Discussion of Spirituality in Family Conferences of Infants with Neurologic Conditions
INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the frequency an…
Experiences of pregnancy loss in Israeli first-time expecting fathers: A qualitative study
Abstract
The aim of this study was to explore the experiences of pregnancy loss in first-time expecting fathers. Participants were 14 Jewish Israeli men who experienced pregnancy loss that occurred at least 3 months before their participation and who had no ot…
Exploring Bereavement in Pediatric Nursing: A Systematic Review
Introduction: The management of parent’s and family’s bereavement, before, during and after the death of a
child is a great challenge for health care professionals (HCPs).
Aim: The purpose of this study was to investigate bereavement in pediatric nursing befor…
Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review
BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the chi…
'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 condition
BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each i…
Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls
PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an inte…
"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities
Purpose: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pe…
What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change
There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care fo…
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with p…
Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed thera…
Consulting parents bereaved by childhood cancer: A qualitative study to
Twelve Australian parents bereaved by childhood cancer were interviewed
Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitati…
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 Members
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferenc…
Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children
BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved
Ethical Considerations in Critically Ill Neonatal and Pediatric Patients
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting through a be…
External second opinions: building trust between health professionals and families
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare team and th…
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