Browse Items · Pediatric Palliative Care Library

Death One Hour After Terminal Extubation (DONATE): A Multisite Cohort Study

INTRODUCTION: Predicting time to death after terminal extubation is valuable to augment family counseling and identify suitable candidates for organ donation after circulatory death (DCD). Our objective was to train and validate a machine learning…

Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*

OBJECTIVES: To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care. DESIGN: Cross-sectional survey of United States National Residency Matching Program pediatric fellows training…

Parent and Provider Perspectives of Clinical Outcomes of Critically Ill Children

INTRODUCTION: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV).…

Paediatric Palliative Care and Anticipatory Prescribing: Just Wasteful Are We?

Aims A fundamental right for patients and their families presented with life-limiting condition, is maintaining choice, in terms of place of care and of death, with evidence to suggest that most patients and their families would prefer home.1…

Racial and Ethnic Disparities in End-of-Life Care of Children Undergoing Terminal Extubation in ICU

INTRODUCTION: Among elderly adults, significant racial disparities in hospice and end-of-life treatment intensity have been shown. This single-center secondary analysis was performed on data collected as part of the DONATE (Death One Hour After…

Children with palliative care needs - the landscape of the nordic countries

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research…

Medication Management Through Collaborative Practice for Children With Medical Complexity: A Prospective Case Series

OBJECTIVE Care coordination for children and youth with special health care needs and medical complexity (CYSHCN-CMC), especially medication management, is difficult for providers, parents/caregivers, and patients. This report describes the creation…

Tags: 2024, Adolescent, Adult, Adverse Drug Reaction, adverse drug reactions, Article, Asthma, Blood Pressure, Bodenstab HM, bradycardia, cerebral blindness, Cerebral Palsy, Child, children with disability, Chronic Disease, Clinical Practice, collaborative practice, Congenital Malformation, Cost Control, Current Procedural Terminology, diazepam, diphenhydramine, drug information, Drug Therapy, drug-related side effects, Dysphagia, economics, Emergency Ward, Epilepsy, Female, health care facility, hospital readmission, Human, Hypotension, Infant, ipratropium bromide, Journal of Pediatric Pharmacology and Therapeutics, July List 2024, Length Of Stay, Long-Term Care, Major Clinical Study, Male, medication management, Medication therapy management, metoclopramide, Multiple Chronic Conditions, Nervous System, Neurology, Newborn, Paracetamol, Parrish RH, pediatric long term care facility, Pharmaceutical, pharmacist, Quinn J, salbutamol, Wo E

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,…

Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study

Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge,…

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)…

Work-related quality of life in professionals involved in pediatric palliative care: a repeated cross-sectional comparative effectiveness study

Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have…

Perinatal Palliative Care Fellowship: Development of a Novel Subspeciality Track in Palliative Medicine

Outcomes: 1. In reviewing trends in pediatric palliative medicine fellowship applicant pools and discussing the landscape of perinatal medicine, participants will understand the rationale for development of a new subspecialty fellowship track in…

Tags: 2024, Adult, Certification, Clinician, conference abstract, fetal health, Fry J, Health Center, Henner N, Human, Journal of Pain and Symptom Management, June List 2024, Neonatology, Palliative Therapy, Perinatal Care, respiratory gas humidifier, Surgery, Vente T

Deepening Clinician Understanding of Family Caregivers' Lived Experiences Caring for Medically Complex Children

Outcomes: 1. Participants will self-report the ability to summarize elements of CMC family caregivers' four "unseen" experiences and justify the need for innovative methods to capture them. 2. Participants will self-report the ability to describe the…

Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange

Outcomes: 1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those…

Tags: 2024, Adult, care behavior, Caregiver, Caregiver Support, Child, Clinician, conference abstract, Diagnosis, Health Care System, Human, Journal of Pain and Symptom Management, June List 2024, McCarthy S, Palliative Therapy, Porter AS, rejuvenation, Respite Care, Self Report

Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity

Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2.…

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…

Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program

Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to…

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…

Experiences of Fathers in Norway Attending an Online Course on Therapeutic Writing After the Death of a Child

After the unexpected death of a child, bereaved parents require prompt access to helpful support systems. Online therapeutic writing courses can make such support accessible. Because few studies have included bereaved fathers as participants, we…

Development of Specialty-Based Pediatric Palliative Care Clinics

Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to…

Symptom Trajectories and Mortality Among Children Receiving Palliative Care: A Prospective Cohort Study

Outcomes: 1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric…

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where…

The Alluring, Enduring, and Troubling Concept of a "Good Death" in Pediatric Palliative Care

Outcomes: 1. Using a critical historical approach, participants will evaluate why, how, and for/with who the "good death" concept emerged and how it has persisted over time. 2. The interprofessional authorship team will illustrate and deconstruct the…

A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care

Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically…

Professional bereavement photography for perinatal loss: A mixed-methods study

Abstract This study addresses research gaps regarding the impact of professional bereavement photography for perinatal loss. Utilizing a mixed-methods research design, 504 parents completed an online survey measuring their attitudes toward…

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is…

Rights of the Dying Child: The Nurses' Perception

Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the…

People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite…

National characteristics of emergency care for children with neurologic complex chronic conditions

Abstract Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those…

Health anxiety by proxy - through the eyes of the parents

Abstract Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to…

Supporting parents while their child is receiving neurocritical care

The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU…

Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU

BACKGROUND AND OBJECTIVES: Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time…

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

Social work practice in perinatal palliative care: an overview

Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning…

Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study

Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an…

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment

Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial…

Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses

BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. METHOD(S): Data was collected between…

Tags: 2024, Adult, April List 2024, Bor NA, Child, Female, Hayli CM, Hospice, Hospice Care, Hospices, Human, International Journal of Palliative Nursing, Kosem DD, Male, Nurse, pediatric nurse, Pediatric Nursing, Questionnaire, Young Adult

PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses

Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories. Study design and setting: Parents self-administered baseline…

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care

Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…

The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities

BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to…

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