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 1701–1725 of 4332 publications
Health-care workers' understanding of and barriers to palliative care services to Aboriginal children with cancer
AIM: To identify barriers in the understanding and provision of optimal palliative care to Aboriginal children with cancer by health-care staff, with the aim to support education and training that highlights the importance of cultural, physical and spiritual n…
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative car…
"Holding back my own emotions": Evaluation of an online education module in pediatric end-of-life care
Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professi…
Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial
OBJECTIVE: Over the past few years, an integrated approach of palliative care (PC) to chronic and/or life-threatening conditions care has been widely used. Home-based PC (HBPC) service is developed to meet the needs of patients at home; however, it has not bee…
Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling
AIM: To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mechanical…
Hope in the uncertainties and certainty for parents of children with rare neurological disorders: Part 2 (of 3): Certainty
This is the second of a three-part series that explores different aspects of uncertainty, certainty and hope in the context of providing clinical care for children with rare and life-limiting neurological disorders. When caring for families impacted by an over…
How can advance care planning tools help young people's voices be heard?
The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health…
How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature Review
Background/aims: The death of a child or young adult is fundamentally painful. Evaluating end-of-life care experiences can identify specific needs and ensure good quality care is provided. Our aim was to identify tools assessing quality of dying, death or end-…
How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care
Purpose
Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retr…
Identifying opportunities for pediatric medication therapy management in children with medical complexity
BACKGROUND: Despite potential benefits of medication therapy management (MTM) for complex pediatric patients, implementation of pediatric MTM services is rare. OBJECTIVES: To describe how a standardized pediatric MTM model identifies potential interventions an…
"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative percepti…
'I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is …
''If they knew what I thought was important that would help a lot more'': Methods for involving children and young people with life-limiting and life-threatening conditions in development of a paediatric palliative care outcome measure
Background: Meaningful involvement of children and young people (CYP) in health research aligns with the UN Convention on the Rights of the Child. Studies collecting primary data from CYP with life-limiting and life-threatening conditions, that could inform co…
"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home
Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limit…
Impact of an Evidence-Based Pediatric Palliative Care Program on Nurses' Self-Efficacy
Background The purpose of this study was to determine the effect of a 1-day evidence-based pediatric palliative care continuing professional development program on nurses' and advanced practice registered nurses' perceived self-efficacy regarding palliative ca…
Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia
Introduction: The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. Method(s): This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service claim from …
Impact of COVID-19 on Admissions and Outcomes for Children With Complex Chronic Conditions
BACKGROUND: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported. OBJECTIVE: To describe the impact of the pandemic on inpa…
Impact of Home-Based Pediatric Palliative Care on Hospital and Emergency Department Utilization at a Single Institution
Background: There is limited data on home-based pediatric palliative care (PPC) demographics and utilization outcomes. Objective(s): Describe who receives home-based PPC and compare emergency department visits, hospital admissions, and hospital days admitted i…
Impact of Specialized Versus General Palliative Care on the Intensity of Medical Care at the End of Life in Adolescents and Young Adults with Cancer: A Population-Based Cohort Study
Outcomes: 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced…
Implementation Science of Paediatric Palliative Care in Lower-Middle-Income Countries in Southeast Asia: An Integrative Review
There is an ongoing development in the paediatric palliative care (PPC) program in Southeast Asia (SEA). However, the implementation process has not been clearly understood among lower-middle-income countries (LMICs) in this region. The purpose of this paper i…
Implementing a nurse-led paediatric palliative care service
BACKGROUND: Children with life-limiting illnesses are living longer. They have complex care needs and require specialised knowledge and skills, yet paediatric palliative care is still at its infancy in most settings worldwide. AIMS: To describe the process of …
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff…
Incidence of anxiety and depression in children and young people with life-limiting conditions
BACKGROUND: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions. METHODS: A comparative cohort study was conducted, using primary and secondary care data from the Clinical …