Browse Items · Pediatric Palliative Care Library

Beyond the healthcare system: The societal and contextual factors impacting parents' participation in decision-making for neonates with life-threatening conditions

Background Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social…

CHILDREN WITH LIFE-LIMITING CONDITIONS USING NONINVASIVE VENTILATION: PARENT PERSPECTIVES

SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their…

Navigating the shadows: medical professionals' values and perspectives on end-of-life care within pediatric intensive care units in Croatia

Background and aim: This study explores healthcare professionals' perspectives on end-of-life care in pediatric intensive care units (ICUs) in Croatia, aiming to illuminate their experiences with such practices, underlying attitudes, and major…

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve…

The spiritual dimension of parents' experiences caring for a seriously ill child: an interview study

Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…

Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18

Objective: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated…

Tags: 2024, American Journal of Perinatology, Artificial Ventilation, August List 2024, Continuous Positive Airway Pressure, Decision Making, diaphragm hernia, Dukhovny S, Early Intervention, Echocardiography, endotracheal intubation, enteric feeding, feeding disorder, Fetus, fetus distress, Gievers L, Health Care Personnel, Human, Infant, Intensive Care Unit, Kim AJH, Madriago EJ, Marshall M, mood disorder, Morbidity, Mortality, mortality risk, multiple organ failure, nasogastric tube, neural tube defect, Newborn, noninvasive positive pressure ventilation, Palliative Therapy, parent counseling, Practice Guideline, Qualitative Analysis, Resuscitation, Review, Ronai C, Seizure, Sepsis, Sleep Apnea Syndromes, Tate T, Taub S, Tracheostomy, trisomy 13/di [Diagnosis], trisomy 13/ep [Epidemiology], trisomy 18/di [Diagnosis], trisomy 18/ep [Epidemiology], ultrasound

Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they…

Palliative Care in the Pediatric Intensive Care Unit

Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the…

Tags: 2024, Aacn Advanced Critical Care, Adolescent, Adult, August List 2024, Child, Crain N, Decision Making, Ethics, Female, Human, Infant, Male, Miller J, Newborn, Palliative Therapy, Pediatric Intensive Care Unit, Preschool Child

Comprehensive care programmes for children with medical complexity

Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been…

Tags: 2024, Adolescent, adverse outcome, August List 2024, Bias, Caregiver, Child, Child Health Care, Child Preschool, Children With Medical Complexity, Chronic Disease, Cochrane Database of Systematic Reviews, Cohen E, community care, Comprehensive Health Care, Connell TG, Controlled Before-After Studies, controlled clinical trial (topic), Cox GR, D’Aprano AL, Decision Making, Emergency Health Service, Emergency Ward, Epidemiology, Functional Status, Gibb SM, Harvey AR, Health Care, Health Care Cost, Health Care Delivery, health care need, health care organization, Health Care Personnel, Health Care Quality, Health Care Utilization, health Insurance, Hospital Admission, hospital readmission, Human, Humans, Infant, Interrupted Time Series Analysis, life satisfaction, Medical Care, Meehan E, Merrick N, meta analysis, Mountford NJ, Multidisciplinary team, Multiple Chronic Conditions, Non-Randomized Controlled Trials as Topic, outcome assessment, Patient Safety, Perception, Preschool Child, Primary Health Care, Program Evaluation, pulmonary aspiration, Quality Of Health Care, Quality Of Life, Randomized Controlled Trial (topic), Randomized Controlled Trials as Topic, remuneration, Review, social determinants of health, Social Worker, statistical bias, Survival Rate, Telemedicine, Therapy, Transition To Adult Care, Williams K

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…

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 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…

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…

Psychometrics assessment of ethical decision-making around end-of-life care scale for adolescents in the final stage of life

Introduction: Healthcare professionals have a critical role in ethical decision-making around end-of-life care. Properly evaluating the ethical decision-making of health care professionals in end-of-life care requires reliable, tailored, and…

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…

Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

How to move forward in shared decision-making in pediatric palliative care

Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared…

Tags: 2024, Adolescent, April List 2024, Aris-Meijer JL, Article, Child, Clinical Article, Current Problems in Pediatric and Adolescent Health Care, Decision Making, Human, Infant, Joren CY, Lantos J, Palliative Care, Palliative Therapy, shared decision making, special situation for pharmacovigilance, Therapy, Verhagen AAE

The most painful estrangement: Death at birth

More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense,…

Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia

Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However,…

Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis

Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were…

Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies,…

Discussing Death as a Possible Outcome of PICU Care

OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected…

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…

Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing

Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are…

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are…

A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit

To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…

Pediatric palliative care in Sweden

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative…

Tags: 2023, Adolescent, Article, Castor C, Child, Current Problems in Pediatric and Adolescent Health Care, Decision Making, Diagnosis, February List 2024, health care facility, Human, Infant, Iveus K, Kreicbergs U, Male, Palliative Therapy, Sweden, Therapy

A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers

Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…

The Cry to Be Involved: Experiences of Caregivers on Participation in Decision Making and Care Provision at Mercy James PICU in Blantyre, Malawi

A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The…

Tags: 2023, 2023 SE5 - Low Resource Setting, Caregivers, Chasweka G, Child, Comprehensive Child and Adolescent Nursing, Crying, Decision Making, Female, Hospitalization, Humans, Intensive Care Units Pediatric, Majamanda MD, Malawi, Male, Namathanga A, Qualitative Research

Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: A systematic review and meta-ethnography

BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their…

Treatment Decision Making and Regret in Parents of Children With Incurable Cancer

Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?

The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in…

Tags: 2023, Blogging, Child, Child Health, Decision Making, Humans, Linguistics, Med Humanit, Metaphor, Neefjes V, October List 2044, patient narratives, War

Parental agency in pediatric palliative care

Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit

Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The…

Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment

Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

Purpose: To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents. Methods: A qualitative descriptive case study was conducted. Purposeful sampling took…

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data

Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…

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