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 1851–1875 of 4332 publications
Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care
Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stres…
Reimagining a children's palliative care educational programme for registered nurses in response to the COVID-19 pandemic
BACKGROUND: Children with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these children. In…
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinici…
Relational Sequelae of Fetal Death During the First Pregnancy: A Qualitative Study on the Subjective Perceptions of the Relationship Between Mothers and Their Adult Subsequent Firstborn Children
Perinatal loss may deeply affect the attachment relationships of mothers and their next-born children. The aim was to explore the subjective perceptions of mothers, who had fetal death during the first pregnancy, and their adult subsequent firstborn children r…
Relationship of race and ethnicity on access, timing, and disparities in pediatric palliative care for children with cancer
PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of ra…
Relationships and Resources Supporting Children With Serious Illness and Their Parents
OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effectiv…
Reported costs of children with medical complexity-A systematic review
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in administrative data…
Resolving Scottish paediatric end-of-life conflicts
This article considers mediation as a means of resolving decision-making disputes between clinicians and parents in paediatric end-of-life cases. It examines the legal tests applied in England and Wales and notes the lack of precedent in Scotland. The advantag…
Resource Utilization in Children who Receive a Pediatric Intensive Care Unit Consult in the Emergency Department: A Retrospective Cohort Study
OBJECTIVES: To describe the characteristics, critical care resource requirements, and outcomes of children who were hospitalized after a Pediatric Intensive Care Unit (PICU) consult in the Emergency Department (ED). METHODS: In this single-centre retrospective…
Role of the Pharmacy Team in Paediatric Palliative Care
Background In 2016, NICE published a guideline on 'End of life care for infants, children and young people with life-limiting conditions: planning and management'.1 These guidelines recommended that pharmacists should be embedded in every paediatric palliative…
Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases
Objectives
To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs.
Study design
Participants 8-24 years-old and their parents were enrolled into 14 stud…
Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Mat…
Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. R…
Should the Dutch Law on Euthanasia Be Expanded to Include Children?
The 2002 Dutch Euthanasia law applies to patients aged 12 years and older. Developments in end-of-life care and decision-making in the last decade have sparked the debate about usefulness and necessity to extend euthanasia to include children under 12 years of…
Sibling Grief over Perinatal Loss—A Retrospective Qualitative Study
Grief over perinatal loss is a personal experience that has a lasting impact on the life of the surviving siblings. This retrospective study is an in-depth exploration of the symbolic construction of the bond with the lost sibling employing Interpretative Phen…
Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care
The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants…
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in harmony with…
Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents
Objective In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While bu…
Specialised palliative care for children and adolescents and their families. [Danish]
This is a review of palliative care for children in Denmark which remains a relatively new area. Studies have shown a high prevalence of symptoms and problems in children with life-limiting diagnoses during the last month of life. Psychological distress also s…
Stories of paediatric palliative care: a qualitative study exploring health care professionals' understanding of the concept
BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with d…
Study to Assess the Effectiveness of Simulation Technique to Overcome Misperceptions of Undergraduate Nursing Students' About Paediatric Palliative Care
OBJECTIVES: The purpose of the current study is to suggest a powerful strategy to overcome the misperceptions of undergraduate nursing students' about paediatric palliative care (PPC), through simulation technique. MATERIALS AND METHODS: A one-group pre-test-p…
Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, …