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 2176–2200 of 4332 publications
Navigating the Terrain of Moral Distress: Experiences of Pediatric End of Life Care and Bereavement during COVID-19
Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to …
Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach
BACKGROUND: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility healt…
Neonatal and perinatal palliative care pathway: A tertiary neonatal unit approach
A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all neonatal units h…
Neonatal donation: are newborns too young to be recognized?
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of aw…
Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit
Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative c…
Neuropalliative Care for Neonates
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is …
Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review
BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main sources of supp…
Occupational therapy in oncology palliative care for adolescents and young adults: Perspectives of Australian occupational therapists
INTRODUCTION: Palliative Care Australia suggests current needs (emotional wellbeing, understanding of cancers impact on relationships, everyday activities, and life milestones) for adolescent and young adults in palliative care are unmet due to a lack of age-s…
Oncologist conceptualizations of pediatric palliative care: challenges and definitions
PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in the…
Oncologists' and haematologists' views of what facilitates or hinders referral of a child with advanced cancer to palliative care in india
Background and aim: In India, there is high incidence, low cure rates and increased cancer-associated deaths among children with cancer. Although a significant proportion need palliative care (PC), few are referred or referred late. Oncologists and haematologi…
Ongoing Value and Practice Improvement Outcomes from Pediatric Palliative Care Education: The Quality of Care Collaborative Australia
PURPOSE: Novice and experienced professionals who care for children with life limiting conditions throughout Australia were provided with pediatric palliative care (PPC) education through the Quality of Care Collaborative Australia (QuoCCA). Impact evaluation …
Oral morphine versus transmucosal diamorphine for breakthrough pain in children: methods and outcomes: UK (DIPPER study) consensus
OBJECTIVES: No randomised controlled trials have been conducted for breakthrough pain in paediatric palliative care and there are currently no standardised outcome measures. The DIPPER study aims to establish the feasibility of conducting a prospective randomi…
Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study
BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology.…
Outcomes following perinatal palliative care consultation: a retrospective review
Objective: To inform clinical practice by describing a model of perinatal palliative care delivery within a fully staffed fetal health center (FHC) inside a freestanding children's hospital. Study design: The team conducted a retrospective chart review of the …
Out-of-Hospital Emergencies in Children Under Palliative Home Care
Introduction: Specialized palliative home care (SPHC) enables children and adolescents with life-limiting illnesses and complex needs to receive care at home. In addition to controlling symptoms and stabilizing the psychosocial situation, crisis anticipation i…
Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital
OBJECTIVE: To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. METHODS: We retrospectively identified children aged 1 to 17 years diagnosed …
Oxford Textbook of Palliative Care for Children
The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of …
Paediatric end-of-life care - symptoms and problems: parent assessment
OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18 years due…
Paediatric euthanasia in Canada: New challenges for end of life care
Canadians are looking to expand their Medical Assistance in Dying (MAID) program to include mature minors. Yet, little evidence exists to support this expansion. The Council of Canadian Academies released a report in December 2018 indicating that little is kno…
Paediatric palliative screening scale as a useful tool for clinicians' assessment of palliative care needs of pediatric patients: a retrospective cohort study
BACKGROUND: Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (Pa…
Paediatric relapsed acute leukaemia: curative intent chemotherapy improves quality of life
OBJECTIVES: Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure…
Pain Assessment and Management in Pediatric Intensive Care Units Around the World, an International, Multicenter Study
The adequate assessment and management of pain remains a challenging task in the Pediatric Intensive Care Unit (PICU). Our goal is to describe how pain is assessed and managed in PICUs around the world and to examine how human and material resources impact ach…
Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice
BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To systematic…
Palliative care for children and young people with stage 5 chronic kidney disease
Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care pra…
Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding
INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explo…