Browse Items · Pediatric Palliative Care Library

Experiences of paediatric terminal oncology patients and their parents in palliative care: A qualitative systematic review

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…

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the…

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review

Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known…

Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life

Objective: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (

Taboo words in pediatric oncology: Communication experiences of nurses and physicians with dying children and their families

Purpose: Despite the numerous benefits of effective communication between patients, families, and healthcare professionals, there are still substantial barriers and communication challenges. This study investigated the experiences of nurses and…

Assessment of knowledge, attitude, and practice and associated factors towards palliative care among health care providers to the pediatric oncology patients in southern Philippines

Background: Palliative care in the Philippines is categorized as 3A, considered to have localized hospice care provision; however, lack of education and awareness are dismal and accounted as the biggest challenges for the health care providers and…

Exploring learners' perspectives of a pediatric palliative care tele-mentoring and education program (project Echo) in a resource-limited setting

INTRODUCTION/BACKGROUND: More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been…

Developing a toolkit to support parents' involvement in child death review: an experience-based co-design study

Abstract Background: Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best…

Beyond treatment: Understanding family experiences in pediatric palliative care

OBJECTIVES: This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the…

Exploring the experiences of children's palliative care for forced migrant families in the United Kingdom: an interpretative phenomenological study

Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with…

Parental experiences of end-of-life decision making in Neonatal Intensive Care Unit: A systematic review and qualitative data synthesis

Objective: This systematic review and meta-synthesis aimed to explore the experiences of parents making end-of-life decisions in Neonatal Intensive Care Unit (NICU). Methods: We searched nine databases up to December 2023, including qualitative…

Tags: 2025, Data Synthesis, Decision Making, February List 2025, Gao J, Health Care Personnel, Human, Lu L, Ma Y, Neonatal Intensive Care Unit, Newborn, Newborn Intensive Care, Patient Education and Counseling, Qualitative Research, Review, Systematic Review, Zhang C, Zhang L

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…

Experience of caregivers and healthcare professionals using a telemedicine programme in a paediatric palliative care unit

BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a…

Facilitators and barriers to parent-child communication in pediatric palliative care: An integrative review

Objectives: This study aimed to identify facilitators and barriers to parent-child communication in pediatric palliative care, providing insights for medical professionals developing targeted interventions to enhance parent-child communication and…

A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care

Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our…

Tags: 2024, Adams S, Adolescent, Adult, Article, assisted ventilation, Caregiver, Checklist, Child Psychiatry, Children With Medical Complexity, chronicity, Chung C, Conversation, decision support system, Demographics, dietitian, Disability, Esser K, Family physicians, feedback system, General Practitioner, Health Care Access, Health Care Personnel, Health care transition, Health Care Utilization, Hospital, Human, Information Processing, Lee S, Major Clinical Study, McKay T, Medical Record Review, Medical Technology, Moore C, Multidisciplinary team, Multiple Chronic Conditions, November List 2024, Nurse Practitioner, Orkin J, Paediatrics And Child Health, Patient Care, pediatric patient, Pediatrician, Pediatrics, pharmaceutical care, pharmacist, Quality Improvement, Rehabilitation, School, Social Worker, standardization, Total Quality Management, Transition To Adult Care, vascular access, Wagman H

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…

HELPING THE HELPERS - SUPPORT IN CHILD BEREAVEMENT FOR PAEDIATRIC HEALTH CARE STAFF

Objectives Around 70% of children with life-limiting conditions will die in hospital,1 meaning many paediatric staff will encounter death during their clinical duties. Observing and experiencing grief around a child's death can have a detrimental…

INTRODUCTION OF A PERINATAL PALLIATIVE CLINICAL NURSE SPECIALIST ROLE ENHANCING PARTNERSHIP WORKING BETWEEN PALLIATIVE CARE AND PERINATAL SERVICES-ONE YEAR ON

Objectives Support such as referral to perinatal palliative care and access to hospice services may promote well-being of families of babies diagnosed with life-limiting conditions.1 2 A children's hospice-based perinatal palliative clinical nurse…

A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study

Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital).…

Tags: 2024, Adolescent, Agosto C, Albanesi B, Amarri S, Article, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Benini F, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, Child, Controlled Study, De Marinis MG, De Tommasi V, De Zen L, Di Nunzio S, Diagnosis, Divisic A, Dolcini A, family support, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Health Care Personnel, Home Care, Human, Iadelica A, Infant, Italy, Journal of Palliative Medicine, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Maternal care, Mazzoni E, Mercante A, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, October List 2024, Orofino R, Palliative Therapy, Paone G, Papa S, Patient Referral, Pediatrician, Pellegatta F, Peruselli C, Piccolruaz UV, Prenatal Care, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, terminal disease, Thaler M, Therapy, Tornesello A, Uez F, Vaccher S, Vezzoli C, Young Adult, Zanin A, Ziggiotto S

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…

New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…

PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?

Objectives The number of children in the UK living with a life-limiting condition is rising year-on-year.1 The average life expectancy associated with many of these conditions also continues to increase and, consequently, more children are surviving…

A PROSPECTIVE REVIEW OF PAEDIATRIC TRAINEES EXPOSURE TO PALLIATIVE CARE IN IRISH HOSPITALS

Aim Paediatric palliative care (PPC) is an ever evolving speciality in Ireland. It is recommended that all healthcare professionals involved in the care of children living with a life-limiting condition need to have an understanding of the core…

Voices of experience: insights from Dutch parents on periviability guidelines and personalisation

OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a…

Assessing Pediatric Resident Needs in Grief and Bereavement Education

Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work…

Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021

Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various…

Moral Distress and Pediatric Palliative Care

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional…

The elements of end-of-life care provision in paediatric intensive care units: a systematic integrative review

Background: Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or…

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children's hospital

Background: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare…

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

Parental quality of life as an outcome of specialised paediatric palliative care: results of the SPhAERA study

Background: The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex…

Tags: 2024, Adolescent, Anne-Kathrin G, August List 2024, Bereavement, Caregiver, Child, Comparative Effectiveness, conference abstract, Eva B, Health Care Personnel, Human, Karin Z, longitudinal study, Major Clinical Study, Male, Palliative Therapy, Quality Of Life, Swiss Medical Weekly

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

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…

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,…

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…

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…

Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study

OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a…

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