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 2901–2925 of 4332 publications
End-of-life care in the pediatric intensive care unit: Survey in Japan
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing pediatric inte…
End-of-life communication: a nationwide study of bereaved parents' perceptions
OBJECTIVE: To investigate bereaved parents' perception of end-of-life communication with healthcare professionals after losing a child due to life-limiting diagnoses. METHODS: A national register identified the causes of death of 951 children aged 0-18 years d…
End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatm…
End-of-Life Milieu of Critically Sick Children Admitted to a Pediatric Hospital: A Comparative Study of Survivors versus Nonsurvivors
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived. Materials and Methods…
Epidemiologic Trends of Adoption of Do-Not-Resuscitate Status After Pediatric In-Hospital Cardiac Arrest
Objectives: To evaluate the prevalence of do-not-resuscitate status, assess the epidemiologic trends of do-not-resuscitate status, and assess the factors associated with do-not-resuscitate status in children after in-hospital cardiac arrest using large, multi-…
Epidemiology of Children With Multiple Complex Chronic Conditions in a Mixed Urban-Rural US Community
OBJECTIVES: Children with multiple complex chronic conditions (MCCs) represent a small fraction of our communities but a disproportionate amount of health care cost and mortality. Because the temporal trends of children with MCCs within a geographically well-d…
Ethics and patient and public involvement with children and young people
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the intr…
Experience of nurses who work with children with palliative care needs: A mixed-method systematic review
OBJECTIVE: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs. METHODS: The el…
Experience of parents receiving results from a quality-of-life study in pediatric advanced cancer: A report from the PediQUEST study
Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the Disseminati…
Experience of parents who have suffered a perinatal death in two Spanish hospitals: a qualitative study
BACKGROUND: Perinatal grief is a process that affects families in biological, psychological, social and spiritual terms. It is estimated that every year there are 2.7 million perinatal deaths worldwide and 4.43 deaths for every 1000 births in Spain. The aim of…
Experience of Perinatal Death From the Father's Perspective
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of perinatal death i…
Experience of sibling death in childhood and risk of psychiatric care in adulthood: a national cohort study from Sweden
Studies have found that sibling loss is associated with an increased risk of death from external causes (i.e. suicides, accidents and homicides). Increased psychiatric health problems following bereavement could underlie such an association. We studied the inf…
Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents
Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely u…
Facing the large variety of life-limiting conditions in children
Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The "Together for Short Lives" (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding …
Factors Associated With Knowledge and Comfort Providing Palliative Care: A Survey of Pediatricians in Mexico
BACKGROUND:: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation. OBJECTIVE:: To examine what factors determine the degree of knowledge and level of comfort M…
Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention
OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided pro…
Family-Centered Culture Care: Touched by an Angel
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based …
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound imp…
Forgiveness as a factor of adjustment in bereaved parents
The aim of this study was to focus on the relationship of forgiveness toward others, self-forgiveness, and anger toward God after the loss of a child. A sample of 84 grieving parents completed a battery of questionnaires. Self-forgiveness was found to be the s…
From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional
OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were collected f…
Functional Evaluation of Eating Difficulties Scale to predict oral motor skills in infants with neurodevelopmental disorders: a longitudinal study
Aim To assess the predictive validity of the Functional Evaluation of Eating Difficulties Scale (FEEDS) on long-term eating developmental outcomes in infants with neurodevelopmental disorders. Method In total, 144 infants (69 females, 75 males) aged 0 to 12 mo…
Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: A single-centre retrospective review
Pain, irritability and feeding intolerance are common symptoms affecting quality of life in children with severe neurological impairment (SNI). We performed a retrospective study to explore the use of gabapentinoid medications for symptom control in children w…
Good death term in the aspect of paediatric palliative care nursing
Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a life-threatening or life…
Grief reactions and coping strategies of trainee doctors working in paediatric intensive care
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotion…
Healthcare professionals' experiences of perinatal loss: A systematic review
Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences, attribute…