Browse Items · Pediatric Palliative Care Library

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

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…

What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature

Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set…

Tags: 2023, 2025 SE1 - Oncology, administrative health data, Adolescent, Adult, Analgesia, Anticipation, Body Image, cancer center, Cancer Chemotherapy, Cancer Diagnosis, Cancer Palliative Therapy, Cancer Patient, Cancer Prognosis, cancer radiotherapy, Cancer Therapy, Checklist, Childhood Cancer, Chinese Version of the Medical Coping Mode Questionnaire, clinical assessment, clinical evaluation, Condren C, Coping, Data Base, data extraction, Demographics, Depression, Depression Anxiety and Stress Scale-21, developmental stage, Disease Burden, Disease Severity, Distress Syndrome, Dying, Edmonton Classification System of Cancer Pain, emotional support, Fatigue, Female, financial management, Follow Up, Gender Identity, Guerin S, Health Care, Health Personnel Attitude, Hematologic Malignancy, Hospital Anxiety and Depression Scale, Human, illness trajectory, Journal Of Adolescent And Young Adult Oncology, Looney K, Male, malignant neoplasm/rt [Radiotherapy], Mental Health, mood change, Neylon K, occupation, Oncology, Patient Autonomy, Patient Referral, patient-reported outcome, Pediatric Quality of Life Inventory, Personal Experience, Population, Prevalence, program appropriateness, Prospective Study, Psycho-Oncology, psychological aspect, psychosocial care, Psychosocial Intervention, Qualitative Analysis, Qualitative Research, quantitative analysis, Questionnaire, Review, Self Report, Semi Structured Interview, sexual health, Short Form 12, Side Effect, social needs, Social Support, Social Support Rating Scale, Social Worker, solid tumor, Study Design, Symptom, Systematic Review, Terminal Care, Thematic Analysis, unmet medical need, Western Australia, workshop, Young Adult

Exploring critical factors in pediatric palliative care in Latin America: A scoping review

This scoping review aimed to provide an overview of the current landscape of pediatric palliative care in Latin America, including policies, regulations, available resources, challenges, barriers, and evidence-based recommendations. We conducted a…

Pediatric palliative care in patients with cardiovascular disease: The basics of why, when, where, who and how

Abstract Background Pediatric Palliative Care (PPC) has been shown to offer a wide berth of supportive services for families as they navigate life with pediatric heart disease. PPC assists families in medical decision making, symptom management,…

"You need to be supported": An integrative review of nurses' experiences after death in neonatal and paediatric intensive care

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

Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence

Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. Aim(s): Appraise the evidence to identify factors influencing referral and access to children's…

Immersive Virtual Reality for Pain and Anxiety Management Associated with Medical Procedures in Children and Adolescents: A Systematic Review

(1) Objectives: The purpose of this study was to investigate the studies that evaluate the effectiveness of immersive virtual reality (VR) as a distraction technique for pain and anxiety associated with medical procedures in children and adolescents.…

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…

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…

Scoping Review on Transitions in the Context of Pediatric Palliative Care

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be…

Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care

Context: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused…

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…

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

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

Empathic Care of Neonates: A Critical Literature Review

Clinical empathy is a multidimensional ability to feel the patient's suffering, branched into components such as cognitive, emotional, and action, which results in benefits for patients, parents, health professionals, medical students, and others.…

Tags: 2024, Albuquerque A, April List 2024, Clinical empathy, empathic concern, Infant Newborn, Luiz Ferreira EA, Neonate, Patient, Patient-centered Care, Review, Sobrinho Valete CO, The Permanente Journal

A "good" death in a pediatric ICU: Is it possible?

Objectives: In the modern pediatric intensive care unit (PICU) physicians are often faced with the need to interrupt life-sustaining treatment (LST) and to allow children to die when no further treatment options are available. Consequently, the…

Tags: 2003, April List 2024, Brain Death, Clinical pathway, Family, Garros D, Human, information retrieval, Jornal De Pediatria, Medical Decision Making, Medline, Newborn Intensive Care, Palliative Therapy, Review

How Do Children With Medical Complexity Die? A Scoping Review

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is…

Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis

Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide…

Palliative care for infants with life-limiting conditions: Integrative review

Background: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist…

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of…

Tags: 2023, abdominal pain, Adolescent, Analgesia, Analgesics Opioid, Anthropology Cultural, Caes L, Child, Child Parent Relation, Chronic Pain, Cochrane Database of Systematic Reviews, Complex Regional Pain Syndrome, cultural anthropology, Disease Severity, endometriosis, ethnography, Family, Family Life, February List 2024, Fibromyalgia, Forbat L, France E, Headache, Health Care Personnel, Health Service, Human, Humans, inflammatory bowel disease, Jordan A, juvenile rheumatoid arthritis, migraine, musculoskeletal pain, narcotic analgesic agent, Noyes J, outcome assessment, Pain Assessment, Pain Severity, patient-reported outcome, pediatric patient, Peer Group, Personal Experience, Prognosis, Quality Of Life, racism, Review, Sibling, Silveira Bianchim M, Social Care, Social Isolation, Social Support, Social Work, Systematic Review, Thomson K, Turley R, Uny I, Wellbeing

Accessibility and challenges of perinatal palliative care in Poland

Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s):…

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential…

Long-Term Ventilation in Children with Medical Complexity: A Challenging Issue

Children with medical complexity (CMCs) represent a subgroup of children who may have congenital or acquired multisystemic disease. CMCs are frequently predisposed to respiratory problems and often require long-term mechanical ventilation (LTMV). The…

Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life

The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at…

Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make…

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…

Are we on the same page? Exploring pediatric patients' involvement with advance care planning

Ethics at the end of life in the newborn intensive care unit: Conversations and decisions

The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue…

Religious and cultural challenges in paediatrics palliative care: A review of literature

Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children…

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…

Paediatric palliative care in the NICU: A new era of integration

We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the…

Designing the physical environment for inpatient palliative care: A narrative review

Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and…

Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review

OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify…

Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools

BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to…

Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review

OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…

Tags: 2022, Analysis, and, Article, Beltran SJ, CARE, Experience, Family, Female, for, guideline, Hamel M N, Human, Infant, intensive, Items, Male, meta, Meta-analyses, Neonatal, Newborn, October 2022 List, Palliative, Parent, Perception, Practice, Preferred, Psychological, Quality, Reporting, Review, Reviews, Satisfaction, systematic, The American Journal of Hospice & Palliative Care, Therapy, Unit, Units

How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature Review

Background/aims: The death of a child or young adult is fundamentally painful. Evaluating end-of-life care experiences can identify specific needs and ensure good quality care is provided. Our aim was to identify tools assessing quality of dying,…

Tags: 2022, abstract, Adult, advanced, Cancer, CARE, Caregiver, Child, Conference, controlled, Cooper M, Cox V, Disease, Female, Flemming K, Fraser L, Gillman C, Heart, Human, intensive, Life, Male, Mayland CR, Mother, Pain, Palliative, Palliative Medicine, Patient, Pediatric, Powell P, Quality, Questionnaire, Review, September 2022 List, Sibling, spiritual, study, Sunderland K, systematic, Taylor P, terminal, Therapy, Turner N, Unit, young, Zeigler L

How can advance care planning tools help young people's voices be heard?

The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences,…

Ethical challenges for a new generation of early-phase pediatric gene therapy trials

After decades of setbacks, gene therapy (GT) is experiencing major breakthroughs. Five GTs have received US regulatory approval since 2017, and over 900 others are currently in development. Many of these GTs target rare pediatric diseases that are…

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