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 1–25 of 115 publications
The Do‐Not‐Resuscitate Order for Children With Terminal Cancer Admitted to a Palliative Care Unit
Introduction: Research on do‐not‐resuscitate (DNR) orders mainly focuses on adult patients, with only a few studies investigating children. We aimed to investigate the use of DNR orders and factors associated with the signing of a DNR order among children with…
Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease
Background: Pediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting conditions, such as advanced chronic kidney disease (CKD), from the time of diagnosis. However, PPC is not commonly integrated into routine pediatri…
Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
Objective: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU).
Study design: Single-center, cross-sectional mixed-methods survey study of bereaved par…
Advance Care Planning for Children With Rare Diseases: A Pilot RCT
Background and objective: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention o…
Advancing Advance Care Planning: Evaluating a Revised Version of Voicing My CHOiCES
Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. Methods…
Demographic and clinical profile of children with congenital heart diseases receiving palliative care
Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored.
Method(s): This prospective interventional study was conducted on 100 patients…
DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?
Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died on our PICU…
Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace
Outcomes: 1. Know how advance care planning with families of children with rare diseases can improve family caregiver outcomes. 2. Understand the impact of race and social determinants of health on family caregiver appraisal of their caregiving and the impact …
Experiences with a national team-based learning program for advance care planning in pediatric palliative care
Background: Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is …
Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life
Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences.
Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language.…
Factors associated with family decision-making after pediatric out-of-hospital cardiac arrest
Aim: This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after pediatric out-of-hospital cardiac arrest (OHCA).
Methods: This is a retrospective, explo…
Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning
Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon.
Objectives: To determine the feasibility and acc…
Has Pediatric Palliative Care Become Too Deferential? A Challenge To and For the Field
Outcomes: 1. Utilizing a case-based approach plus content expert didactic presentation, participants will self-report ability to identify 3 defensive mechanisms utilized by caregivers and providers during shared decision making (SDM) that can compromise its ou…
Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis
While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a sys…
Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case study
The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway is critic…
Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit
Objective: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU).
Study design: Single-center cross-sectional survey of bereaved parents who experienced …
Psychiatry and interdisciplinary pediatric palliative care: a scoping review
BACKGROUND: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the most curr…
Shared decision-making in pediatric palliative care in the Netherlands
Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care an…
The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths
Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC) on advanc…
The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practi…
The ROAR Score: Quantifying Risk of Acute Return to the Hospital in Pediatric Hospice Patients
Outcomes: 1. Implement a scoring system to facilitate clear and concise communication of goals of care between palliative care teams, hospice staff, and families. 2. Understand the benefits of a scoring system for hospice staff to mitigate family distress and …
A One Day Paediatric Palliative Care Study Day Improves Skills
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated. The day wa…
Page 1 of 5Next →