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 201–225 of 4332 publications
Nursing partnerships in paediatric oncology palliative care: An umbrella review of nurses' experiences and family-centered outcomes
Background Partnership nursing in paediatric oncology, palliative, and supportive care is essential for optimising both patient and family outcomes. Nurses play a key role in symptom management, emotional support, and care coordination, while families require …
Outcome measurement tools in pediatric oncology palliative care: a scoping review of domains, validation and contextual relevance
Paediatric palliative care (PPC) in oncology plays a crucial role in enhancing the quality of life for children with cancer and their families. However, outcome measurement in this context remains fragmented, with tools often lacking validation, paediatric spe…
Outcomes of patients with trisomy 13 and 18 in a center with a dedicated perinatal palliative care program
Introduction: The objective of this study is to assess outcomes of pregnancies complicated by trisomy 13(T13) or trisomy 18(T18) and infants with T13 and T18, who were managed in a center with a perinatal palliative care program. Methods: This is a single cent…
Paediatric oncology meets palliative care: A road towards a common language
Advances in paediatric oncology (PO) have substantially improved survival rates in childhood cancer, yet an increasing complexity has generated new clinical, psychosocial and ethical challenges. Integrating paediatric palliative care (PPC) early in the oncolog…
Paediatric palliative care and paediatric euthanasia: clarifying a moral continuum
This Viewpoint explores the complex relationship between two approaches to end-of-life care for children—paediatric palliative care and paediatric euthanasia. Both approaches share the goal of alleviating suffering in children with life-limiting conditions. Th…
Paediatric palliative care following hospital discharge: Prevalence and factors associated with non-continuity of palliative care for children with cancer in Busoga sub-region-eastern Uganda; A mixed methods study
Palliative care (PC) is crucial for children with cancer to alleviate suffering and enhance quality of life. However, continuity of pediatric palliative care (PPC) can be disrupted by factors such as lack of knowledge, stigma, bureaucratic hurdles, inadequate …
Pain assessment in children and young people with developmental disabilities: a scoping review
Paediatric pain has been identified in the literature as being undertreated and often misdiagnosed. This article details a scoping review that aimed to identify the facilitators and barriers to using pain assessment tools for children and young people with dev…
Palliative Care and Decision for Terminal Cardiopulmonary Resuscitation in the PICU: Single-Center, Retrospective, Mixed-Methods Analysis, 2013-2022
Objectives:
To quantify the prevalence of cardiopulmonary resuscitation (CPR) in the final 24 hours of life (terminal CPR [tCPR]) and characterize the decision to forego tCPR.
Design:
Retrospective, mixed-methods datasets.
Setting:
PICU in a United States, m…
Palliative Care Education for Pediatric Critical Care Trainees: A Scoping Review and a Call to Action
ObjectiveReview the current teaching methods, curricula, and assessment tools for pediatric palliative care (PPC) within the pediatric s intensive care setting for pediatric critical care medicine (PCCM) trainees as it pertains to the following domains: (1) Sy…
Palliative Care in Children with Severe Neurological Impairment: The PediQUEST Refine Case Series
Background: Children with severe neurological impairment (SNI) experience recurrent, complex pain and distress that are difficult to assess and manage. Specialized pediatric palliative care (SPPC) teams are well positioned to support this population, yet no st…
Palliative care in the neonatal intensive care unit: qualitative study of parent experiences
OBJECTIVES: To explore parents' experiences of palliative care in the neonatal intensive care unit (NICU) to inform and improve the delivery of family-centred palliative care. METHOD(S): This exploratory prospective qualitative study employed a pragmatic appro…
Palliative care provision for children in general practice: A retrospective cohort study
OBJECTIVES: In the Netherlands, around 750 children (0-21 year) die annually from potentially palliative conditions. The majority of these children reside at home, receiving care from hospital services and primary care. This study aims to examine general pract…
Palliative Care Service Needs of Children with Complex Chronic Conditions in a Hospital-to-Home Transition Unit: Insights from an Underserved Population
Introduction: Children with complex chronic conditions (CCC) represent an increasingly prevalent and vulnerable group in pediatric care, accounting for a substantial proportion of hospital admissions and health care expenditures worldwide. These children frequ…
Parental experience of end-of-life care for their infant or child in the United Kingdom
Background
Evidence confirms that provision of end-of-life care for infants, children and young people varies across the United Kingdom, however it is not clear how this variation impacts children and their families.
Methods
This study aimed to assess parenta…
Parental experiences in pediatric advance care planning for children with life-limiting illnesses: a qualitative meta-synthesis
Objective
To systematically synthesize the experiences of parents of children with life-limiting illnesses (LLIs) in pediatric advance care planning (pACP), extract core perceptions and influencing factors, and provide practical guidance to optimize the clinic…
Parental experiences of perinatal loss, with a focus on hospice provision: A thematic analysis
OBJECTIVE: Perinatal palliative care (PPC) offers holistic support to families of babies with life-limiting conditions, addressing emotional, psychological, and practical needs alongside ensuring dignity for the baby. While there is growing evidence to support…
Parental Grief and Bereavement: Exploring the Impact of Collaboratively Created Films on Audience Members
Film documentaries are an important approach for capturing the public's attention and elevating discussions about uncomfortable or hidden topics such as death and dying, yet little attention has been given to documenting the grief experience of bereaved parent…
Parental hope in paediatric palliative care: a systematic review of the ethical issues in evidence-based literature
BACKGROUND: This systematic review aims to raise awareness of the concept of parental hope, which is distinct from the idea of agency - acting on behalf of someone else. Parental hope is an important factor in end-of-life care, particularly in light of recent …
Parent–Clinician Communication and End-of-Life Preparation in Pediatric Oncology: An Explanatory Sequential Mixed-Methods Study
ABSTRACT Purpose Parental preparedness for their child's end of life (EOL) may lessen perceived suffering and prolonged grief. Although clear communication may support parental preparedness, the specific communication components that influence this process rem…
Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study
Aim: To explore parents' needs during end-of-life decision-making and to understand their experiences in a neonatal intensive care unit (NICU) following the death of their child. Method(s): This observational, retrospective study was conducted in the NICU of a…
Patient Concerns on Access to Supportive Care Medicines and Symptom Management Outcomes Among Children with Cancer in Tanzania
Background: Pediatric cancers cause significant morbidity and mortality among children in Tanzania. Chemotherapy remains the primary treatment, but it often leads to treatment-induced toxicities that necessitate supportive care medicines. This study assessed p…
Patterns of Pain and Pain Management in Pediatric Oncology and Hematology Patients: Experience from a Tertiary Care Center in Pakistan
Abstract: Background Pain is one of the most distressing symptoms in children with malignancies, yet pediatric palliative care (PPC) services in low- and middle-income countries (LMICs) remain underdeveloped. In Pakistan, gaps in physician training, limited op…
Pediatric advance care planning: a mixed-methods evaluation of documentation and sharing in current practice
Background
Pediatric advance care planning (pACP) aims to align future care and treatment of children with life-limiting conditions (LLCs) with children’s and their families’ values, goals and preferences. Documenting and sharing pACP elements with healthcare …
Pediatric advanced chronic kidney disease as a family challenge: coping and communication in daily life
Pediatric advanced chronic kidney disease (CKD) profoundly affects not only the patient but the entire family system. This study explores how affected families-including patients, siblings, and primary caregivers-perceive and experience advance CKD as a chroni…
Pediatric End-of-Life Decision-Making in Mainland China: Case-Based Analysis of Illness Narratives
BackgroundPediatric palliative care in Mainland China is still developing. Biological, psychological, and social factors may change during the course of illness and after the child's death.ObjectivesThis study examines pediatric end-of-life decision-making in …