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 1476–1500 of 4332 publications
Silent Tears of Midwives: 'I Want Every Mother Who Gives Birth to Have Her Baby Alive'-A Narrative Inquiry of Midwives Experiences of Very Early Neonatal Death from Tanzania
Background: Midwives working in settings with limited clinical resources experience high rates of very early neonatal deaths. Midwives manage the impact of this grief and trauma almost daily, which may affect patient care and their own well-being.
Research ai…
Simulated learning for staff at a children's hospice: a quality improvement project
Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the knowledge, sk…
Simultaneous Home-Based Pediatric Hospice and Palliative Care: Characterizing the Population
Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving simultaneous c…
Sleep quality moderates the association between family bereavement and heart rate variability
Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality on cardiova…
Social support and prolonged grief disorder symptoms in parents who lost their only child from urban and rural China
Objective: The one-child policy has existed in China for more than 30 years. It brought benefits to the country's economic development and reduced the magnitude of the population within a short period. However, it has led to the emergence of a significant numb…
Sources of emotional challenge for practitioners delivering family centred care after the death of child: an inductive thematic analysis.
Care after the death of a child and support of their bereaved family is an important element of the services offered by children's hospices in the United Kingdom. The study aims to explore the emotional challenges of those delivering care to families of childr…
Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years
Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the an…
Spiritual and cultural influences on end-of-life care and decision-making in NICU
Understanding and respecting the spiritual beliefs, ethnic roots, cultural norms and customs of individual families is essential for neonatologists to provide clinically appropriate and humane end-of-life care. This review describes the religious/philosophical…
Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The required int…
Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework
AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such te…
Supporting parental caregivers of seriously ill children: findings from a feasibility and acceptability study of a hope intervention
ABSTRACT
Parents of seriously ill children face complex experiences for which support is valuable. We evaluated the Keeping Hope Possible Toolkit with 16 parental caregivers to assess feasibility and acceptability using a quasi-experimental design. Participant…
Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Ne…
Surgical Intervention in Patients Receiving Pediatric Palliative Care Services
10.1542/6315738932112Video AbstractPEDS-VA_2022-0589056315738932112Many patients receiving pediatric palliative care (PPC) present with surgically treatable problems. The role of surgery in the care of these patients, however, has not yet been defined. We cond…
Symptom management care pathway adaptation process and specific adaptation decisions
Background: There is substantial heterogeneity in symptom management provided to pediatric patients with cancer. The primary objective was to describe the adaptation process and specific adaptation decisions related to symptom management care pathways based on…
Symptoms of advanced cancer in palliative medicine: a longitudinal study
Objectives: This study aimed to examine the symptomatology of patients with advanced cancer at admittance to palliative care services and to investigate how the symptomatology changed during the first month, and whether these changes were associated with vario…
Taboo words in pediatric oncology: Communication experiences of nurses and physicians with dying children and their families
Purpose: Despite the numerous benefits of effective communication between patients, families, and healthcare professionals, there are still substantial barriers and communication challenges. This study investigated the experiences of nurses and doctors working…
The age limit for euthanasia requests in the Netherlands: a Delphi study among paediatric experts
Background The Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia.
Objective Gain insi…
The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build relationships wi…
The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team
Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as challenging pro…
The Cry to Be Involved: Experiences of Caregivers on Participation in Decision Making and Care Provision at Mercy James PICU in Blantyre, Malawi
A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The effects can be r…
The Curative, the Palliative… What Does It Matter? The Experience of Parents Who Accompanied Their Child Through Serious Illness and End of Life
Research Framework: In serious illness, the proliferation of therapeutic possibilities often delays the moment when death is foreseen and when palliative care, too often associated with the end of life and death, is introduced into patients’ care paths. In thi…
The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based…