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 2376–2400 of 4332 publications
A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines
BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is kno…
Analysis of health administration data to inform health service planning for paediatric palliative care
BACKGROUND: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inf…
Analysis of how nurses cope facing the death of a paediatric patient
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient. METHODOLO…
And the Beat Goes On: Heartbeat Recordings through Music Therapy for Parents of Children with Progressive Neurodegenerative Illnesses
Background: Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize the rhyth…
An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer
CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides wr…
An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer
Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively…
Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professi…
A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early through EOL to i…
Applying Palliative Care Principles to Communicate With Children About COVID-19
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandc…
A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions
BACKGROUND: Spinal muscular atrophy is an autosomal-recessive, progressive neuromuscular disease associated with extensive morbidity. Children with spinal muscular atrophy have potentially increased life spans due to improved nutrition, respiratory support, an…
A quality improvement project to increase palliative care team involvement in pediatric oncology patients
BACKGROUND: Pediatric palliative care (PPC) for oncology patients improves quality of life and the likelihood of goal-concordant care. However, barriers to involvement exist. OBJECTIVES: We aimed to increase days between PPC consult and death for patients with…
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention
OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared pa…
Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
ImportanceAdvance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing …
Assessment of Healthcare Professionals' Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course
Background: Perinatal/neonatal palliative care (PNPC) offers a plan of care for improving the quality of life of infants when the prolongation of life is no longer the goal of care. The number of PNPC programs has increased in recent years, but training for cl…
Assessment of knowledge, attitude, and practice and associated factors towards palliative care among health care providers to the pediatric oncology patients in southern Philippines
Background: Palliative care in the Philippines is categorized as 3A, considered to have localized hospice care provision; however, lack of education and awareness are dismal and accounted as the biggest challenges for the health care providers and for their pa…
Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer
BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric p…
Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer
ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive…
A systematic review exploring palliative care for families who are forced migrants
AIMS: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications. DESIGN: Systematic literature review. DATA SOURCES: The followi…
A Tertiary Care-based Complex Care Program: Improving Care for Children With Medical Complexity
OBJECTIVE: Children with medical complexity (CMC) have significant health care costs, but they also experience substantial unmet health care needs, hospitalizations, and medical errors. Their parents often report psychosocial stressors and poor care satisfacti…
A Tool for the Evaluation of Clinical Needs and Eligibility to Pediatric Palliative Care: The Validation of the ACCAPED Scale
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiti…
Attachment to God as a Mediator of the Relationship Between Religious Affiliation and Adjustment to Child Loss
Objectives: The loss of a child is a traumatic life event. While bereavement research has examined the roles of both interpersonal attachment and religiosity in coping with loss, only a handful of studies have addressed the concept of attachment to God (ATG). …
A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience
This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scot…
Barriers and adherence to pain management in advanced cancer patients
AIM: To assess patients' barriers to pain management and analgesic medication adherence in advanced cancer patients METHODS: Prospective cross-sectional study in advanced cancer patients receiving chronic opioid therapy. Age, gender, cancer diagnosis, Karnofsk…
Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions. DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years…