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 176–200 of 4332 publications
Measuring the psychological symptoms of pediatric palliative care patients and their caregivers: a scoping review of available instruments
Background
Given the unique characteristics of patients, their diversity, and the complexity of clinical care, conditions suitable for pediatric palliative care (PPC) require a patient- and family-centered approach.
In addition to assessing physical symptoms,…
Medical assistance in dying in pediatrics: a retrospective case study of clinical interactions and implications for team training
In Canada, medical assistance in dying (MAiD) has been a legal end-of-life (EOL) option since 2016. Although minors are not legally eligible, pediatric palliative care (PPC) teams can be involved in MAiD-related discussions initiated by patients or parents. Ho…
Memory making during bereavement care following the death of a child: A survey exploring parental experiences
Background: Grief experienced by parents following the death of their child is profound and places them at a higher risk of adverse health outcomes. Memory making practices intend to provide families the tools to meaningfully adjust and make sense of a child's…
Midwifery practice in perinatal palliative care: A scoping review and conceptual framework
Background Perinatal palliative care (PPC) is a multidisciplinary, family-centred approach aimed at improving the quality of life and comfort of newborns with life-limiting conditions, and their families. Midwives can play a crucial role in supporting these pa…
Mind Yourself So You Can Mind Me; The Role of Parental Behaviour in Perinatal Death on the Surviving Sibling's Grief
Children's grief, in perinatal loss, can be misunderstood and overlooked. Parental behaviour while mourning infant loss and parental ability to respond to their own grief has a crucial role in the child's grief. This study aimed to explore parental behaviour a…
Mock No Code: A simulation curriculum for responding to patients with varying goals of care
Context
Identifying the limits of medical interventions to sustain life, navigating advance care plans (ACP), and managing symptoms at end of life are critically important skills to pediatric residents who care for children with serious illnesses in high acuit…
Model of interprofessional care for the newborn and family during neonatal death and dying: a multistage evaluation mixed methods study
An interprofessional care model is crucial to advancing the quality of integrated, patient-centered care, particularly in critical situations. The purpose of this study was to develop an interprofessional care model for newborns and their families experiencing…
Multimodal Pediatric Advance Care Planning Training for Neonatal Intensive Care Unit and Palliative Care Practitioners: Training, Self-Efficacy, and Practice
Introduction:
Pediatric advance care planning is an iterative process that supports families in sharing their values, hopes, and preferences for their child's future medical care. Advance care planning rarely occurs in the neonatal intensive care unit (NICU), …
Multiprofessional Clinician Perspectives on Communicating about Brain Death in Children
Background
Communicating about death by neurologic criteria (DNC), or brain death, presents complex challenges for multiprofessional providers in pediatrics. The heterogeneity of state-level and institutional brain death policies drives variability in clinical…
Narrative Medicine to Enhance the Well-Being of Caregivers in the Care of Pediatric Patients with Complex or Serious Illnesses: A Systematic Review
Background: Being the caregiver of a pediatric patient with a complex or serious illness can be emotionally intense and stressful. Caregiver burden significantly affects the biopsychosocial well-being of both the child and the caregiver. Interventions such as …
Navigating arrested parenthood: Bereaved parents’ and healthcare professionals’ experiences of less-invasive autopsy using micro-focus computed tomography
Background Little is known about the experiences of bereaved parents who agree to less-invasive autopsy (LIA) investigations following pregnancy loss. This study aimed to explore parental and professional views and experiences of LIA using a new imaging techni…
Navigating birth plans: illuminating neonatal provider perspectives in prenatally diagnosed complex fetal anomalies
Background/objectives: Birth plans include preferences for neonatal care in prenatally diagnosed complex medical conditions. This study aimed to determine how neonatal providers interpret birth plans for those with prenatally diagnosed life-limiting conditions…
Navigating existential conversations about life and death with families in paediatric palliative care: a qualitative interview study with healthcare professionals
Background: When a child has a life-threatening illness, guidelines emphasise the importance of providing holistic support to the whole family. Conversations about existential issues are essential in this support, yet staff often lack formal training in commun…
Navigating the complex landscape of childhood dementia: caregiver psychological well-being, grief, and health system challenges
Objective: This study used the Supportive Care Needs Framework (SCNF) to examine the psychological well-being of caregivers of children with dementia and their experiences navigating health and disability systems, including financial hardship.
Methods: Caregi…
Navigating the interplay between feelings of failure and newfound kindness: a qualitative study exploring the experiences of cancer bereaved fathers
BACKGROUND: The death of a child has a tremendous impact on fathers' lives. However, their grief experiences remain understudied in pediatric palliative care and childcare research. The aim of this study is to provide insight into bereaved fathers' experiences…
Navigating the landscape of paediatric haematological malignancies: a qualitative exploration of caregivers' experiences and palliative care integration in Pakistan
Background
In Pakistan, over 10,000 children are diagnosed with cancer annually, with leukemia being the most common. These cases present challenges in symptom management, prognosis, and caregiver burden. Despite evidence supporting early integration, the use …
Neonatal Intensive Care Unit Nurses' End-of-Life Care Experience: Becoming a More Empathetic Professional Caregiver
Background:
Few studies have examined how empathy develops in neonatal intensive care units (NICUs) as nurses experience negative outcomes in end-of-life care delivery (eg, burnout, moral conflict, and psychological distress). Various characteristics of neonat…
Neonatal nurses' perceptions of providing palliative care in neonatal intensive care units in Saudi Arabia
There is limited literature on the perceptions and practices of nurses in Saudi Arabia related to neonatal palliative care (NPC). This study aimed to assess NPC perceptions and practices among female nurses in Saudi Arabia. This cross-sectional survey study wa…
Neuropsychological assessments in a large cohort of pediatric palliative epilepsy surgery patients
Background: Pediatric patients with drug-resistant epilepsy (DRE) are often referred for evaluation to consider epilepsy surgery. Neuropsychological testing is recommended for all patients undergoing surgical evaluation. Prevalence and factors affecting testin…
Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practice
OBJECTIVES: Pediatric intensive care unit (PICU) nurses spend the most time with patients and families during a critical illness. However, nurses, families, and other clinicians conceptualize suffering differently, leaving some types of suffering when a child …
Not just there by chance: a qualitative study on continuity and quality of spiritual care in paediatric palliative care
Children with life-limiting conditions and their families face profound existential and spiritual challenges throughout the paediatric palliative care (PPC) trajectory. While spiritual care (SC) is a recognised component of PPC, its continuity and quality acro…
Nurses' experiences of end-of-life communication with children who have life-threatening conditions in paediatric intensive care units: a qualitative descriptive study
Background
Effective communication is critically important for providing child- and family-centred care. This approach puts children and their parents at the centre of the nursing care and decision-making processes. However, there are limited studies from a cu…
Nurses' Experiences with Spiritual Care in Paediatric Palliative Care: A Systematic Review
Background/Objectives: Spiritual care is a core component of holistic paediatric palliative care, yet nurses often feel insufficiently prepared to address the spiritual and existential needs of seriously ill children and their families. This systematic review …
Nurses' perspectives on implementing pediatric palliative care: a qualitative participatory study on the emerging role of the advanced practice nurse
The implementation of Pediatric Palliative Care (PPC) in hospital settings places considerable demands on nursing staff, particularly during early phases of change. This study explored nurses’ experiences, attitudes, and perceived support needs during the earl…
Nurses’ stressful experiences in providing palliative and end-of-life care for children: A meta-synthesis
ObjectivesTo explore the stress experienced by nurses while addressing the needs of families during palliative and end-of-life care for children and young adults.MethodsA meta-synthesis was conducted. Six online databases (PubMed, Medline, EMBASE, Cochrane Lib…