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 3551–3575 of 4332 publications
Community palliative care nurses’ challenges and coping strategies on delivering home-based pediatric palliative care: A qualitative study
Objective: The aim of this study was to explore the experience of community palliative care nurses providing home care to children. Method: A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from…
Comparative effectiveness of usual source of care approaches to improve end-of-life outcomes for children with intellectual disability
CONTEXT: Children with intellectual disability (ID) are at risk for adverse end-of-life outcomes including high emergency room utilization and hospital readmissions, along with low hospice enrollment. OBJECTIVES: The objective of this study was to compare the …
Comparing routine inpatient data and death records as a means of identifying children and young people with life limiting conditions
Background
Recent estimates of the number of children and young people with life limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data.
Aim
To compare routine inpatient data and death records as means…
Congenital malformations, palliative care and postnatal redirection to more intensive treatment - a review at a Swiss tertiary center
PURPOSE: The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occu…
Continuing bonds with the living: bereaved parents’ narratives of their emotional relationship with their children
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent. This narrative inqu…
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal ris…
Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis
BACKGROUND: In the last decade, the number of children with life-limiting and life-threatening conditions in England has almost doubled, and it is estimated that worldwide, there are 1.2 million children with palliative care needs. Families and professionals c…
Decision making in pediatric oncology: Views of parents and physicians in two European countries
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative interview st…
Defining Success in Pediatric Palliative Care while Tackling the Quadruple Aim
Palliative medicine is a widely established field acquiring acceptance nationally in in hospitals and gaining momentum culturally as we care for more patients with complex chronic illness. The challenge is no longer whether or not high-quality patient care inv…
Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and t…
Development of research priorities in paediatric pain and palliative care
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical th…
[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients.
AIM: To investigate the timing and manner of communication with parents concerning the introduction of pallia…
Digital Storytelling: Families' Search for Meaning after Child Death
Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an innovativ…
Directives of adequacy of the therapeutic effort in children. Experience of the Pediatric Palliative Care Unit of Pereira Rossell Hospital Center (2009-2015)
Introduction: In certain patients, "directives on the adequacy of therapeutic effort" (DAET) known as advanced care planning are important tools to align medical care to patient's and family's objectives of care. Purpose: To describe characteristics of patient…
Discussing Serious News
AIM: The ability to communicate serious news to patients and families in a caring and compassionate way is a critical skill for physicians. This study explores the impact of a novel communication skills workshop that included bereaved parents in role play on p…
Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California
BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a maj…
Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity
Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and suffering t…
Disparities in the intensity of end-of-life care for children with cancer
BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: B…
Distress in Caregivers Accompanying Patients to an Emergency Department: A Scoping Review
Background Despite substantial research interest in caregiver distress in the emergency department (ED), no recent review of the literature exists. Objective Our aims were to map primary research on caregiver distress in the ED, synthesize key concepts underpi…
Divorce and parity progression following the death of a child: A register-based study from Finland
Most studies that have examined whether a child's death influences parental relationship stability have used small-scale data sets and their results are inconclusive. A likely reason is that child loss affects not only the risk of parental separation, but also…
Dyadic coping mediates the relationship between parents' grief and dyadic adjustment following the loss of a child
BACKGROUND AND OBJECTIVES: This study aimed to examine forms of dyadic coping (DC) as mediators of the association between parents' grief response and dyadic adjustment and to determine whether these indirect effects were moderated by the child's type of death…
Early mortality in children with acute lymphoblastic leukemia in a developing country: the role of malnutrition at diagnosis. A multicenter cohort MIGICCL study
The role of malnutrition at diagnosis as a predictor of early mortality in Mexican leukemia children remains controversial. The objective of present study was to investigate whether malnutrition was a predictor of early mortality during the first year of treat…