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 1801–1825 of 4332 publications
Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer
BACKGROUND: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill childr…
Parent and medical team disagreements in the UK: universal lessons in the origins and resolution in conflict
In recent decades, there has been an increase in life expectancy in children with life-limiting conditions. Ideally, parents and clinicians would work together to ensure the best care for these children. Several cases have appeared in the media in recent years…
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and descr…
Parents' decision-making for their foetus or neonate with a severe congenital heart defect
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is …
Parents' Experiences of Being Involved in Medical Decision Making for Their Child With a Life-Limiting Condition: A Narrative Review
Background/aims: Parental involvement in the decision-making processes about medical treatment for their child with a life-limiting condition is recognised as good practice. Previous research has highlighted factors affecting the decision-making process, but l…
Parents' Needs and Their Perceived Obstacles With Team Members in Perinatal Palliative Care: A Qualitative Phenomenological Study
Advances in prenatal diagnosis have made medical, psychological, and ethical issues regarding the diagnosis of fetal anomalies a crucial topic of research. This study identified the needs of parents of unborn babies with fetal anomalies and their views regardi…
Parents' views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study
BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known…
Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians
BACKGROUND: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the fact of compl…
Patient, Caregiver, and Clinician Participation in Prioritization of Research Questions in Pediatric Hospital Medicine
The research agenda in pediatric hospital medicine has seldom considered the perspectives of young people, parents and caregivers, and health care professionals. Their perspectives may be useful in identifying questions on topics for research.To prioritize una…
Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literatur…
Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer
PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with…
Patient Involvement in RSV Research: Towards Patients Setting the Research Agenda
Respiratory syncytial virus (RSV) causes a substantial disease burden among children, elderly and immunocompromised adults. Recognition of patient involvement in research is gradually increasing. Most research is being carried out without active patient involv…
Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care
BACKGROUND: Children with advanced cancer have access to comprehensive cancer care and hospice care if they enroll in concurrent hospice care. However, little is known about the patterns of nonhospice healthcare services used by these children. OBJECTIVE(S): T…
Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention.
OBJECTIVES: To exa…
Pediatric and Adult Cardiologists' and Respirologists' Referral Practices to Palliative Care
Context: Children and adults with advanced cardiac or respiratory disease may benefit from specialized palliative care (SPC), but there has been little SPC research in this area. Objective(s): To explore pediatric cardiologists' and respirologists' (pediatric …
Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model
BACKGROUND: Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. OBJECTIVE(S): The p…
Pediatric End of Life Care and Bereavement During COVID- 19: The Experiences of Moral Distress
From the onset of the COVID-19 pandemic, psychosocial oncology providers have experienced various types of moral distress. Challenges include difficulty building rapport with telephone/computer replacing face-to-face connections, lack of clarity around who is …
Pediatric End-of-Life Care Skills Workshop: A novel, deliberate practice approach
INTRODUCTION: Pediatric end of life (EOL) care skills are a high acuity, low occurrence skill set required by pediatric clinicians. Gaps in education and competence for this specialized care can lead to suboptimal patient care and clinician distress when carin…
Pediatric Hospice and Palliative Care Services and Needs Across the Northwest United States
CONTEXT: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. OBJECTIVES: To describe th…
Pediatric palliative care and end-of-life: a systematic review of economic health analyses
OBJECTIVE: To perform a systematic review of the health economic evidence on the care of children and adolescents with complex clinical conditions, comparing groups included and not included (control group) in palliative care at the end of life.
DATA SOURCE: T…
Pediatric palliative care for children with cancer: a concept analysis using Rodgers' evolutionary approach
BACKGROUND: Providing access to pediatric palliative care (PPC) for children living with a serious illness, such as cancer, is of critical importance, although this specialized intervention, as a novel concept, still seems vague and complicated. The present st…
Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review
BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack …
Perceptible Signs of End of Life in Pediatric Intensive Care Patients
Background: How children die in pediatric intensive care units (PICUs) has been poorly described, and support for parents during this traumatic experience could be improved. Better information on perceptible signs of the end of life (EOL) in children may help …
Perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt
BACKGROUND: Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important s…
Perceptions of specialty palliative care and its role in pediatric stem cell transplant: A multidisciplinary qualitative study
Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT. Little is k…