Browse Items · Pediatric Palliative Care Library

Pediatric palliative care in children and young people with non-oncological diseases: a scoping review

Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of…

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…

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…

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…

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…

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

Medication Management Through Collaborative Practice for Children With Medical Complexity: A Prospective Case Series

OBJECTIVE Care coordination for children and youth with special health care needs and medical complexity (CYSHCN-CMC), especially medication management, is difficult for providers, parents/caregivers, and patients. This report describes the creation…

Tags: 2024, Adolescent, Adult, Adverse Drug Reaction, adverse drug reactions, Article, Asthma, Blood Pressure, Bodenstab HM, bradycardia, cerebral blindness, Cerebral Palsy, Child, children with disability, Chronic Disease, Clinical Practice, collaborative practice, Congenital Malformation, Cost Control, Current Procedural Terminology, diazepam, diphenhydramine, drug information, Drug Therapy, drug-related side effects, Dysphagia, economics, Emergency Ward, Epilepsy, Female, health care facility, hospital readmission, Human, Hypotension, Infant, ipratropium bromide, Journal of Pediatric Pharmacology and Therapeutics, July List 2024, Length Of Stay, Long-Term Care, Major Clinical Study, Male, medication management, Medication therapy management, metoclopramide, Multiple Chronic Conditions, Nervous System, Neurology, Newborn, Paracetamol, Parrish RH, pediatric long term care facility, Pharmaceutical, pharmacist, Quinn J, salbutamol, Wo E

Procedural Interventions for Terminally Ill Children - Are We Aiding Palliation?

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help…

Pediatric Population Management Classification for Children with Medical Complexity

Improving the overall care of children with medical complexity (CMC) is often beset by challenges in proactively identifying the population most in need of clinical management and quality improvement. The objective of the current study was to create…

Tags: 2024, Brooks ES, Chronic Disease, Hogan A, June List 2024, Kenyon CC, Luan X, Pediatrics, Penrose T, Population Health, Population Health Management, Pulcini CD, Rubin DM

Role of Pediatric Palliative Care in German-Speaking Centers for Heart Transplantation

Background: Pediatric palliative care (PPC) aims to improve quality of life for patients with life-limiting diseases and complex symptoms irrespective of cure-directed therapy. Generally an early integration of PPC is recommended. This is also the…

National characteristics of emergency care for children with neurologic complex chronic conditions

Abstract Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those…

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…

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment

Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial…

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…

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

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…

Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study

Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may…

Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda

Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided…

The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team

Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as…

Vulnerabilities experienced by family members/caregivers of children with chronic conditions

The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Rosello Un which 15 family members/caregivers of…

Children With Complex Chronic Conditions: A Multifaceted Contemporary Medical Challenge Not Restricted to PICUs

Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant…

Tags: 2020, August List 2044, Child, Chronic Disease, Comorbidity, Editorial, Fontela P, Human, Only Child, Palliative Therapy, Pediatric Critical Care Medicine, Piva J

Goals of Care Among Parents of Children Receiving Palliative Care

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.…

Palliative care referral criteria and application in pediatric illness care: A scoping review

BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how…

Tags: 2023, Bernier Carney KM, Chronic Disease, Cong X, Goodrich G, Hinderer KA, June 2022 List, Kiza AH, Lao A, Palliative Care, Palliative Medicine, Pediatrics, Referral And Consultation, Systematic Review, Tan Z

Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

Tags: 2023, Atenci—n Domiciliaria de Salud, Chronic Disease, Continuidad de la Atenci—n al Paciente, Continuity Of Patient Care, Cuidados paliativos, Enfermedad Cr—nica, Enfermeria Clinica, home care services, Home Nursing, Investigaci—n cualitativa, June 2022 List, Paediatrics, Palliative Care, Pediatr’a, Qualitative Research, Rodr’guez-Su‡rez CA, Santana-Medina J

[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]

INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative…

Tags: 2023, Acta Médica Portuguesa, Adolescent, Child, Chronic Disease, Humans, July List 2023, Machado MdC, Needs Assessment, Portugal, Psychometrics, Reproducibility of Results, Simoes MJP, Surveys And Questionnaires, Tavares F, Translations, Young Adult

Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients

OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…

Goal-Concordance in Children with Complex Chronic Conditions

Abstract Objectives: To characterize delivery of goal-concordant end-of-life (EOL) care among children with complex chronic conditions and to determine factors associated with goal-concordance. Study design: This was a retrospective review of goals…

The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study

Children's perspectives on the benefits and burdens of research participation

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…

A Scale for the Identification of the Complex Chronic Pediatric Patient (PedCom Scale): A Pilot Study

INTRODUCTION AND OBJECTIVES: The complex chronic condition (CCC) is an increasingly prevalent reality in pediatrics. However, having a CCC does not necessarily mean being a complex chronic patient (CCP). From this perspective, we developed an…

Tags: 2022, Anales de Pediatría, Chronic Disease, Cordón-Martínez A, Disabled child, Fernández-Ferrández T, Godoy-Molina E, Multiple Chronic Conditions, Navas-López VM, Nuñez-Cuadros E, October 2022 List, Pérez-Frías J, Ruiz-Sánchez JM, Surveys And Questionnaires

Demographic and Clinical Differences Between Applied Definitions of Medical Complexity

OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a…

Tags: 2022, Child, Chronic Disease, Cross-sectional Studies, Demography, Goodman DM, Heneghan JA, Hospital Pediatrics, Hospitalization, Hospitals, Humans, Infant, October 2022 List, Pediatric, Ramgopal S, Retrospective, Studies

Reported Costs of Children with Medical Complexity-A Systematic Review

Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in…

Tags: 2022, Children, Chronic Disease, healthcare, Journal Of Child Health Care, Medical assistance, Medical Complexity, Medical costs, Ohinmaa A, Rahman S, Sebastianski M, September 2022 List, Sidra M, Systematic Review

Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England

CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they…

"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…

Parents' attitudes towards a difficult situation resulting from the chronic disease of their child

INTRODUCTION AND OBJECTIVE: The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation…

A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care…

Tags: 2020, 2022 Special Edition 2 - Parent Perspectives, Baldwin L, Chronic Disease, Focus Groups, Heath G, Journal of Child Health Care., Parents, Shaw KL, Transitional Care

Impact of COVID-19 on Admissions and Outcomes for Children With Complex Chronic Conditions

BACKGROUND: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported. OBJECTIVE: To describe the impact of the…

Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases

Objectives To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. Study design Participants 8-24 years-old and their parents were enrolled…

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