Browse Items · Pediatric Palliative Care Library

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…

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…

Healthcare personnel's perspectives on health technology in home-based pediatric palliative care: a qualitative study

Background: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care.…

Nurses' experiences of providing palliative care for children with life-limiting conditions

BACKGROUND: Paediatric palliative care (PPC) has evolved in response to the increased prevalence of children who have been diagnosed with life-limiting conditions. Nursing care is a fundamental aspect of PPC and understanding nurses' experiences is…

Tags: 2024, August List 2024, Brogan P, Child, Health Personnel Attitude, Human, International Journal of Palliative Nursing, palliative nursing, Palliative Therapy, Reid BB

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…

Place of death among children from 0 to 17 years of age: A population-based study from Sweden

Aim: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died…

"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities

Purpose: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to…

Tags: 2024, Ahmed A, Annals Of Family Medicine, August List 2024, Batres R, CBPR, Communication, Community-Based Participatory Research, Culhane-Pera KA, de la Parra P, Focus Groups, health disparity, Jinhee C, Needle J, pediatric healthcare, Pergament S, Professional-family Relations, Qualitative Research, Sey L

The Special Delivery Unit: A Novel Concept for Mother-Baby Continuity for Major Fetal Abnormalities

Objective: This article describes the experience in the planning and development of a special delivery unit (SDU) at our free-standing children's hospital in Austin, Texas. Study design: Description of various aspects of the development of the SDU.…

Tags: 2024, American Journal of Perinatology, Anesthesiology, anxiety, Apgar score, Article, August List 2024, Bebbington MW, Birth Weight, Blood Transfusion, body mass, Cesarean Section, Clinical Outcome, colonoscopy, community hospital, Cost Effectiveness Analysis, diabetic ketoacidosis, electronic medical record, Female, Fetus, fetus disease, fetus echography, fetus surgery, Gestational Age, Health Care Access, Health Care Cost, Health Care Delivery, health Insurance, hospital discharge, Human, Intensive Care Unit, interatrial septum, Kosko A, Length Of Stay, Medical Education, Moise KJ, neuroprotection, newborn surgery, Nix M, obstetric delivery, obstetrical nursing, operating room, outcome assessment, oxygen consumption, Palliative Therapy, Parenteral Nutrition, patent ductus arteriosus, Patient Care, Patient Satisfaction, pharmacist, preeclampsia, Pregnancy, pregnant woman, Prenatal Care, Prenatal Diagnosis, puerperium, Resuscitation, Systematic Review, Teaching, telephone interview, Thomas H, wound infection

End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study

Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason…

Self-Assessed Educational Needs of Chinese Pediatric Clinicians Regarding Pediatric Palliative Care: A Cross-Sectional Investigation

Background: An important first step in enhancing professional palliative care training is to investigate the educational needs of pediatric clinicians in this field. The aims of this research were to analyze the extent of end-of-life care experience…

Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit

Objective: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). Study design: Single-center cross-sectional survey of bereaved parents who…

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

An Evolutionary Concept Analysis of Pediatric Hospice and Palliative

Purpose: This study aimed to clarify the concept of pediatric hospice and palliative care through conceptual analysis. It also sought to identify the differences between related concepts such as pediatric death care and pediatric spiritual care, in…

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…

A Review of Parental Bereavement Interventions: Implications for Clinical

The untimely death of a child is an incredibly traumatic experience for parents and their loved ones. It uproots every aspect of their life, leading the bereaved parents to be far more likely to have poorer physical and mental health outcomes. This…

Grasping the meaning of perinatal palliative care for the multiprofessional team

Objective: To grasp the meaning of perinatal palliative care for the multidisciplinary team. Methods: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public…

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

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

Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale

The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life.…

Tags: 2024, Adolescent, Adult, Alves SP, Article, August List 2024, Braz AC, Cerebral Palsy, Child, Child Health, Childhood Disease, Chronic Disease, cohesion, confirmatory factor analysis, construct validity, Disease, Educational Status, Emotional Stress, Family Life, family relation, Family Relations, Female, Fontaine AM, Graça L, Human, Humans, impact on family, Impact on Family Scale, International Journal of Environmental Research and Public Health, life satisfaction, Likert scale, Male, Middle Aged, Parent, parental care, Parents, pediatric complex chronic illness, Perception, Personal Satisfaction, Portugal, Psychology, psychometry, Questionnaire, Reproducibility, Reproducibility of Results, Satisfaction, satisfaction with life, scoring system, social cohesion, sociodemographics, Surveys And Questionnaires, test retest reliability, validation study

Increasing trend in patients with life-limiting and complex chronic conditions

Introduction and objectives: To estimate the frequency of patients with diagnoses associated with life-limiting conditions (LLCs) or complex chronic conditions (CCCs). Methods: Retrospective mixed population-based and hospital-based cohort study.…

Tags: 2024, Anales de Pediatría, Andrés de Llano J, August List 2024, Chronic Disease, del Villar Guerra P, Epidemiology, Hospitalization, Marugán de Miguelsanz JM, Ochoa-Brezmes J, Palliative Care, Prevalence

Simulation, Storytelling, and Pediatric End-of-Life Care: A Continuing Professional Development Approach for Nurse Residents

Background: Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care…

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…

Interventions Performed in Children With Immunocompromised Conditions in the Pediatric Intensive Care Unit Within 48 Hours of Death

Background: Understanding interventions preceding death in children with immunocompromised conditions is important to ensure a peaceful and dignified perideath experience. The aim of this study was to describe the number of interventions performed in…

A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions

Abstract Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. Design and methods: A qualitative phenomenological study was conducted, collecting data through deep…

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