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 1351–1375 of 4332 publications
Implementation of evidence-based psychosocial care in six pediatric oncology units across Pakistan
BACKGROUND: Despite rising childhood cancer incidence, low-middle income countries often fall short of quality resources to prioritize and develop psycho-oncology services. Patients and families suffering from cancer are subject to great psychological distress…
Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
Objective
To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care.
Methods
A retrospective observational study including all patient mor…
Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers.
Design: A qualitative case study method using semistructured interviews was e…
Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol
INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was deve…
Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consul…
Including Goals of Care in Treatment Decisions —Meeting Them Where They Are Involves Moving.
Asking about the guiding goal of care (GOC) offers health care professionals a perspective on how an individual patient or a family prioritizes health care decisions and is an essential component of shared-decision making. Listening to the patient and family r…
Increasing Trend and Effects of Pediatric Palliative Care on Children with Non-Cancer Diagnoses
Objectives
Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients.
Methods
This retrospective cohort study used the integrative ho…
Incremental cost analysis of pediatric hospice care in rural and urban Appalachia
Purpose: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act) versus stan…
In every detail: spiritual care in pediatric palliative care perceived by healthcare providers
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country.
Objectives: To identify spi…
Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
Background
Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type,…
Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis
Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of health-related…
Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaborat…
Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood.
OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to thei…
Is an Exercise Program for Pediatric Cancer Patients in Palliative Care Feasible and Supportive?-A Case Series
(1) Background: Growing evidence indicates benefits through exercise programs in pediatric oncology throughout the whole cancer trajectory. This should include palliative care, too. This project analyzes the feasibility of a supervised exercise program offered…
"It's a Different Conversation": Qualitative Analysis of Pediatric Home-based Hospice/Palliative Care Visits' Perceived Value
Home-based hospice and/or palliative care (HBHPC) is an important and increasingly utilized aspect of care for children with serious conditions-those with high mortality risk, which either impacts their quality of life or carries a significant caregiver burden…
"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients
BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care.
OBJECTIVE(S): This qualitative study a…
"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care
BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use.
OBJECTIVE(S): This study explored US South Asi…
“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years …
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked…
Listening to the Residents: The Perception of Pediatric Palliative Care Education in a Residency Program in Brazil
Background: In Brazil, a relevant portion and children suffer without receiving adequate control of their symptoms. Failures in pediatrician training may contribute to this problem. Objective: The goal was to characterize the educational failures perceived by …
Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)
BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to identify demogr…
Maternal-fetal surgery as part of pediatric palliative care
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face a life wit…
Max's legacy: an evaluation of the impacts of baby loss on staff and families
Background/Aims
There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences o…