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 2576–2600 of 4332 publications
'I'm praying for a miracle': characteristics of spiritual statements in paediatric intensive care unit care conferences
CONTEXT: Supporting spiritual needs is a well-established aspect of palliative care, but no data exist regarding how physicians engage with patients and families around spirituality during care conferences in paediatric intensive care units (PICU). OBJECTIVES:…
Improved parent-child communication following a RCT evaluating a legacy intervention for children with advanced cancer
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy intervention on …
Improving communication with parents: the Neonatal Intensive Care Unit Empathy Workshop
OBJECTIVE: To implement an "Empathy Workshop" focused on improving Neonatal Intensive Care Unit (NICU) health care provider communication skills. METHODS: Staff-led, small group "Empathy Workshops" were conducted over a 2 year period. NICU parents answered a s…
Improving mealtimes for paediatric intensive care children and families: A quality improvement initiative
INTRODUCTION: Many critically ill children can be fed orally at some point during their paediatric intensive care (PICU) stay, but reduced appetite and other factors may impact their intake. At home, oral feeding is usually delivered by parents, so involving p…
Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme
AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of simulation-base…
Increased perinatal survival and improved ventilation skills over a five-year period: An observational study
BACKGROUND AND AIM: The Helping Babies Breathe program gave major reductions in perinatal mortality in Tanzania from 2009 to 2012. We aimed to study whether this effect was sustained, and whether resuscitation skills changed with continued frequent training. M…
Initiating end-of-life decisions with parents of infants receiving neonatal intensive care
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented. METHOD: Formal conversations (n = 27) between do…
Initiating Palliative Care Referrals in Pediatric Oncology
CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult. OBJECTIVE(S): We sought to desc…
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for …
Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study
BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliativ…
Integration of Routine Parental Request of Organ Donation in End-of-Life Care of Children with Neurologic Disorders in the UK: Unresolved Medical, Legal, Cultural, and Religious Challenges
The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care should be ref…
Inter-Rater Reliability of the Phase of Illness Tool in Pediatric Palliative Care
BACKGROUND: Phase of Illness is used to describe the stages of a patient's illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial (κ = .67) and moderate (κ = .52) …
Interventions for siblings, extended family, and community members after pediatric death
The death of a child is felt by extended family, friends, and community members. Most bereavement care research focuses on programs for parents. Little is known about the efficacy of support programs for other grieving individuals. We conducted a scoping revie…
Investigation of Modifiable Variables to Increase Hospice Nurse Comfort With Care Provision to Children and Families in the Community: A Population-Level Study Across Tennessee, Mississippi, and Arkansas
Context: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understo…
Issues, Challenges, and Potential of Palliative Care in Pediatric Nursing: A Systematic Review
Background: Palliative care is an essential right for infants and children with a life-threatening illness. However, palliative care is still unavailable in some developing countries. This study aimed to explore the issues, challenges, and potential of palliat…
Italian Nurses' Attitudes Towards Neonatal Palliative Care: A Cross-Sectional Survey
PURPOSE: Neonatal palliative care becomes an option for critically ill neonates when death is inevitable. Assessing nurses' attitudes towards, barriers to, and facilitators of neonatal palliative care is essential to delivering effective nursing care. METHOD(S…
"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for …
Judge rules that baby should be removed from ventilator and given palliative care
An eight week old baby should no longer be kept alive on a ventilator and should be given palliative care to spare him the risk of a “painful, agonising death,” a High Court judge has declared.1
There are no further treatment options for the baby, who was ref…
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
BACKGROUND: The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child H…
Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three opportunities t…
Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research
Abstract Context Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the relations…
Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope
Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of …
Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience…
Location of Clinician-Family Communication at the End of Life in the Pediatric Intensive Care Unit and Clinician Perception of Communication Quality
Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family. Objective: We examined the current state of clinician perspective on c…