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 126–150 of 4332 publications
How are agency and autonomy understood in children’s palliative and end-of-life care?: A narrative review
Public policy in Canada develops through deliberative democracy and, increasingly, public engagement. Children and youth (‘young people’) remain largely excluded from these processes however; this exclusion is especially evident in health arenas where two conc…
How Latine Families Navigate Pediatric Loss Amid Broken Systems: A Qualitative Study With Caregivers and Providers Using Liberation Psychology
This study explored the challenges and strengths shaping Latine families’ experiences of pediatric loss in the United States context. Eighteen semistructured interviews with healthcare providers (n = 7) and bereaved Latine caregivers (n = 11) were carried out …
How many children have palliative care needs and which of them are less likely to be actively seen by services? A cross-sectional analysis of survey data
Background
The prevalence of children with life-limiting conditions is increasing. It is difficult to estimate palliative care needs in this population, and few studies have explored the characteristics or service use patterns of this group. The aim of this st…
ICD-10-based screening increased detection of hospitalisations potentially eligible for paediatric palliative care consultation in the emergency department: a validation study
BACKGROUND: Despite emergency departments (ED) having traditionally focused on disease reversal and survival goals, care in these settings also involves paediatric patients with life-limiting or life-threatening conditions (LLC/LTC) who experience acute exacer…
Ideal Timing and Perceived Barriers for Palliative Care Integration for Children with Cancer in China
Context
Pediatric palliative care (PPC) for children with cancer can improve the quality of life for patients and their families, but barriers impede the early integration of PPC for many patients.
Objectives
This study aims to investigate the current status o…
Identifying automatic criteria for specialist pediatric palliative care referrals in oncology: a scoping review
Background
The early integration of specialized pediatric palliative care (SPPC) is an accepted standard in pediatric oncology. However, many children are referred to SPPC services late in their cancer journey or not at all. Adult oncology studies suggest that…
Identifying Key Areas to Improve Care for Families Around the Time of Stillbirth or Neonatal Death: A Survey of Maternity Services in Australia
This article focuses on assessing the alignment of Australian hospital-based maternity services’ practices following perinatal death—including stillbirth and neonatal death—with evidence-based recommendations and aspirational targets outlined in the Clinical P…
Impact of Animal-Assisted Interactions on Children with Advanced Cancer
BACKGROUND: Children with advanced cancer and their caregivers experience significant stress, which can diminish quality of life (QoL). Animal-assisted interaction (AAI) is beneficial in pediatric populations but less well studied in children with advanced can…
Impact of a shared pediatric palliative care program on end-of-life care trends among children: a 10-year retrospective study in Taiwan
BACKGROUND: Early integration of pediatric palliative care (PPC) improves symptom control, communication, and goal-concordant decision-making. Despite these benefits, PPC remains underutilized in many Asian healthcare systems, where referrals are often delayed…
Impact of palliative care consultation on neonatal end-of-life care utilization
Background: Research evaluating the impact of pediatric palliative care (PPC) consultation on care utilization in the NICU is limited. Objectives: Describe the impact of PPC on care utilization during admission and end-of-life (EOL). Methods: Retrospective rev…
Impact of Palliative Care Educational Program on Knowledge and Attitude Regarding Pediatric Palliative Care Among Healthcare Professionals Working in Nepal
ABSTRACT There is a critical and persistent unmet need for pediatric palliative care (PPC) services in low- and middle-income countries (LMICs), with the lack of specialized training among healthcare professionals (HCPs) identified as a major barrier. This stu…
Impact of Specialized Pediatric Palliative Care on Bereaved Parents' Mental and Physical Health
Context: Pediatric death can lead to long-term adverse effects on parents' health. Objective(s): To describe the trajectory of parental mental and physical health burden within 24 months before and after a child's death and to evaluate the impact of specialize…
Implementation and Delivery of a Comprehensive Bereavement Program in Pediatric Palliative Oncology
Background/Objectives: Bereavement care is widely endorsed as a standard of pediatric oncology and palliative care, yet it remains inconsistently implemented across pediatric oncology programs in the United States, and few programs have reported longitudinal d…
Implementation of Polish guidelines on futile therapy protocols in pediatric intensive care units: a multicenter retrospective review
The futile therapy protocol (FTP) is a formal document supporting decisions to withdraw or withhold certain forms of treatment owing to their futility, with the only motivation being the good of the patient, considered individually for each patient. We conduct…
Implementing Education for Community Adult Hospice Nurses to Expand Pediatric Hospice and Palliative Care
Children with life-limiting illnesses living in nonurban areas have minimal access to community-based pediatric hospice and palliative care. Barriers such as geography, limited continuing education opportunities, and clinician discomfort compound this issue. P…
Implementing the PAR Scale in a Pediatric Concurrent Care Setting: A Quality Improvement Project
Pediatric patients in concurrent hospice and palliative care often face fragmented communication regarding family goals of care during acute hospitalizations. This quality improvement project evaluated clinician and care coordinator experiences with the implem…
Improved Quality of Life in Children and Families Following Enrollment in a Pediatric Palliative Care Program: A Prospective Cohort Study
Background/Objectives: Pediatric palliative care seeks to relieve suffering and improve the quality of life of children with severe conditions and their families. This prospective cohort study assessed changes in quality of life following enrollment in a pedia…
‘I’m tired of justifying why my life has stopped’: A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavement
Background: Family carers play an essential role in caring for terminally ill relatives, but evidence regarding the experiences of young/young adult carers is limited. Objectives: To explore the experiences and support needs of young/young adult carers when ca…
Increasing complexity in children with life-limiting conditions in England: an analysis of national routine data
Introduction: The number of children with life-limiting conditions has risen in recent decades, partly due to medical advances enabling increased survival. It is unclear how the medical complexity of this population has changed. Aim: To use quantitative analys…
Influence of multi-party consultations on child involvement in clinical encounters: An observational study of paediatric palliative care
Objective: To investigate how the presence of multiple parties during paediatric palliative care encounters influences involvement of child patients. Methods: This mixed-methods observational study analysed 60 video recorded routine clinical encounters within …
Initial pediatric palliative care provision in patients under 25 years of age classified in ACT/RCPCH group 4: a three-year multicenter retrospective study
Background
Pediatric palliative care (PPC) plays a crucial role in addressing the needs of children with life-limiting conditions and their families. However, gaps remain in understanding the care trajectories and optimal timing for PPC initiation among childr…
Inpatient Symptom Prevalence, Severity, and Improvement in Children Referred for Pediatric Palliative Care Consultation: Findings from a Multisite Quality Improvement Registry
Objective: To describe the prevalence, severity, and changes in symptom distress in children with serious illness seen by inpatient pediatric palliative care (PPC).
Study design: Cross-sectional retrospective analysis of a multisite, inpatient PPC quality imp…
Integrated home-hospital paediatric palliative care versus standard management in deceased patients with cancer: retrospective cohort study
Objective To analyse differences in the last month of life (LMoL) of patients with paediatric cancer, classified depending on if they were included in an integrated home–hospital paediatric palliative care (PPC) programme with 24-hour assistance or received st…
Integrating Electronic Patient-Reported Outcomes and Palliative Care in Pediatric Advanced Cancer: The PediQUEST Response Multisite Randomized Controlled Trial
PURPOSE: We conducted the PediQUEST Response to the Pediatric Oncology Symptom Experience (PQ Response) randomized controlled trial (RCT) to assess whether combining feedback from an electronic patient-reported outcome (ePRO) system with specialized pediatric …