Browse Items · Pediatric Palliative Care Library

Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition

Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper…

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…

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

Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer

PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious…

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…

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…

Hand Castings of Children With Terminal Illnesses From Cancer Can Provide Comfort to Grieving Families

Registered nurses have voluntarily created hand casts for families, providing comfort during challenging moments. Hand casting moves the patient's family and nurses. As requested by parents, staff apply a quick-drying gel to sick children's hands and…

Experiences of Pediatric Palliative Care Among Bereaved Parents Who Lost a Child With Leukemia in South Korea

A Pilot of a Telehealth-Hospice Transition Intervention for Children and Young Adults with Cancer

Background and aims: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice…

Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of…

Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing

Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…

Complications and benefits of enteral feeding in children with progressive neurological disease in a palliative care service: a retrospective study

Abstract Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases,…

Tags: 2024, Adolescent, Child, Child Preschool, Duceac LD, Duceac M, Enteral Nutrition, Female, Hizanu M, Humans, Infant, Journal of Medicine and Life, Male, March List 2025, Nervous System Diseases, Nervous System Diseases/et [Etiology], Palliative Care, Quality Of Life, Retrospective Studies

Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review

Abstract Background Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While…

Prevalence of pain in the last 2 weeks of life in hospitalized pediatric patients

Abstract Introduction: Pain is a very common symptom in children who have a complex, chronic, life-threatening or life-limiting disease, generating a negative impact on the quality of life of the child and his or her family. There is very limited…

Intrathecal baclofen therapy as treatment for spasticity and dystonia: Review of cases in a pediatric palliative care unit

Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…

Oral feeding practices in medically complex infants receiving prolonged high-flow nasal cannula support: A retrospective cohort study

Aim: To characterise the feeding profile and care pathway for infants receiving prolonged high-flow nasal cannula (HFNC) respiratory support for management of a chronic condition at one facility from January to December 2021. Methods: Data regarding…

Tags: 2024, Cameron M, Chawla J, Clarke S, Cox E, deglutition disorder, February List 2025, high-flow nasal cannula, Infant, Johnstone C, Journal of Paediatrics and Child Health, Marshall J, Moore M, oral feeding, respiratory therapy, Schilling S

Pediatric Palliative Care Simulation Improves Resident Learning Outcomes: an 11-Year Review

Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric…

Utilization of a prenatal palliative care consultation pathway for congenital heart disease

Background: A large Midwestern hospital has no consistent process for prenatal integration of palliative care for parents carrying a fetus diagnosed with complex congenital heart disease. The palliative care team is typically consulted postnatally…

Exploring the Role of Genetic Testing in Decisions to Redirect Care in Critically Ill Infants

OBJECTIVE: Genetic disorders are a major determinant of morbidity and mortality within neonatal intensive care units (NICUs). Studies have found genetic testing in critically ill infants may lead to changes in clinical decisions such as pursuing end…

Dignity in the Pediatric Population: A Systematic Review

Context: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult…

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

BACKGROUND: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community…

Defining and quantifying population-level need for children's palliative care: findings from a rapid scoping review

BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and…

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…

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

Nurses' Perspectives Regarding Challenges of Providing Perinatal/Neonatal End-of-Life Care in a Regional Hospital: An Exploratory Qualitative Study

AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…

Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center

Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the…

Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit

Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional…

PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT

Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed…

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…

A RETROSPECTIVE AUDIT FOR PRE-HOSPITAL RESPECT DOCUMENTATION FOR CHILDREN WITH COMPLEX LIFE LIMITING NEURO-DISABILITY ADMITTED TO PAEDIATRIC INTENSIVE CARE UNIT

Objectives As per NICE guidelines [NG 61], children and young people with life limiting conditions and their carers or parents should have enough time and opportunities for discussions about difficult decisions around end-of-life care. A…

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…

THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS

Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West…

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…

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…

Utility of do-not-resuscitate orders for critically ill infants in the NICU

Objective: To better understand the value of DNR orders for critically ill infants in the NICU. Methods: A prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period…

Application of the Adverse Childhood Experiences Framework to the NICU

Background: Infants and families requiring neonatal intensive care unit (NICU) care often experience significant stress and trauma during the earliest period of the infant's life, leading to increased risks for poorer infant and family…

Tags: 2024, Advances in Neonatal Care, Adverse Childhood Experiences, Cartagena D, Child, Crawford A, Darilek U, Infant, Infant Care, Infant, Newborn, Intensive Care Units, Neonatal, Koerner R, Malin KJ, McGlothen-Bell K, McGrath JM, Pados BF, Parents, Vance AJ, Vittner D

Finding a New Normal: Maternal Experiences Transitioning to Home From the Neonatal Intensive Care Unit Caring for Technology-Dependent Infants

Background: Infants discharged from the neonatal intensive care unit (NICU) dependent on medical technology (eg, respiratory or nutritional support) are a growing vulnerable population. These infants are medically fragile, prone to…

Tags: 2022, 2024 SE2 - Parent Perspectives, Critical Care Nurse, Hagstrom A, Infant, Infant, Newborn, Intensive Care Units, Intensive Care Units, Neonatal, Mothers, Neonatal, Newborn, Norton M, Patient Discharge, Technology

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