Browse Items (32 total)
- Tags: Prospective Study
Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit
Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J
End-of-Life Care for Newborn Infants: A Multicenter Real-Life Prospective Study
Tags: 2024, Article, August List 2024, Avila AS, Cardigni G, Congenital Malformation, Contrera PJ, Cross-sectional Study, Delivery Room, developed country, Diagnosis, Drug Withdrawal, Female, Fernandez AL, Fernandez Riera P, Human, Infant, Male, Mariani GL, middle income country, Multicenter Study, Neonatal Intensive Care Unit, Neonatology, Newborn, Newborn Death, Newborn Intensive Care, Perinatal Death, Portela MC, Prematurity, Prospective Study, Quality Of Life, Terminal Care, Urquizu Handal MI, Vain NE, Virasoro MDLA
Gastrointestinal symptoms and problems in children cared by pediatric palliative care teams. Observational study
Tags: 2024, abdominal pain, Adolescent, Andes Pediatrica, Article, Bernada Scarrone MM, Child, Constipation, Consultation, Diarrhea, digestive prosthesis, digestive system hemorrhage, Dysphagia, Gastrointestinal Symptom, Gastrostomy, Human, Infant, Le Pera Garofalo V, Major Clinical Study, May List 2024, mucosa inflammation, Multicenter Study, Nausea, Observational Study, Palliative Care, Palliative Therapy, pediatric patient, Preschool Child, Prevalence, Prospective Study, Quality Of Life, Questionnaire, School Child, Vomiting
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Tags: 2024, actigraph, actimetry, Adolescent, April List 2024, Article, BMC Palliative Care, Caregiver, Child, Chronic Disease, Claus B, Clinical Article, Controlled Study, Decision Making, diagnostic procedure, Drug Therapy, Female, Human, Human Experiment, Kubek LA, Male, Palliative Therapy, Prospective Study, protocol, Questionnaire, Questionnaires, School Child, Sleep, sleep efficiency, sleep time, special situation for pharmacovigilance, stage 1 sleep, Therapy, Wager J, wake after sleep onset, Wakefulness, Zernikow B
Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
Tags: 2023, Article, Child, Chronic Disease, Comorbidity, Congenital Malformation, Controlled Study, Deeter DM, Eckman ST, Even KM, February List 2024, Female, Freeman MC, Hodge CH, Human, Intensive Care, Journal of Palliative Medicine, Kerris EW, Major Clinical Study, Male, Palliative Therapy, Pediatric Intensive Care Unit, Pilot Study, Prospective Study, tertiary health care
Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Tags: 2021, 2023 SE3 - Oncology, Article, Cancer Nursing, Cheng MH, Child, Controlled Study, Decision Making, Education, Female, Human, incurable cancer, Liang J, Liang MZ, Male, Multicenter Study, Only Child, Palliative Therapy, Propensity Score, Prospective Study, risk factor, risk perception, Sun Z, Tang Y, Ye ZJ, Yu YL, Zhang XY
Sedation in pediatric palliative care: The role of pediatric palliative care teams
Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study
Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis-A multicenter prospective study
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
Tags: 2020, Article, Bagatell R, Baker J N, Cancer, Cancer Palliative Therapy, Cancer Prognosis, Cancer Recurrence, cancer risk, Child, Childhood Cancer, Clinical Decision Making, Cohn S L, Cohort Analysis, confidence interval, Controlled Study, Cronin A M, Diller L R, Expectation, Female, Glade Bender J, Granger M M, High Risk Population, Human, Interpersonal Communication, Levine A, Mack J W, Major Clinical Study, Male, Marachelian A, Medical Record, Neuroblastoma, Odds Ratio, Oncology 2020 List, parental behavior, Park J, Patient Care, pediatric patient, Priority Journal, Prospective Study, Quality Of Life, Questionnaire, Rosenberg A, Shusterman S, Taddei S, theoretical model, Twist C J, Uno H
Effect of the COVID-19 pandemic response on intrapartum care, stillbirth, and neonatal mortality outcomes in Nepal: a prospective observational study
Tags: 2020, Basnet O, Bhattarai P, Coronavirus 19, COVID-19, Developing World 2020 List, Gurung R, intrapartum care, Kc A, Kinney M V, Lancet Global Health, Lawn J E, Målqvist M, Moinuddin M, Neonatal mortality, Nepal, Observational Study, Paudel P, prospective observational study, Prospective Study, Shrestha M P, Stillbirth, Subedi K, Sunny A K
Inter-Rater Reliability of the Phase of Illness Tool in Pediatric Palliative Care
Tags: 2020, Adult, Anderson A K, Article, Burke K, Child, Cohort Analysis, Controlled Study, Coombes L H, Feasibility Study, Female, Human, interrater reliability, Major Clinical Study, Male, May 2020 List, Palliative Therapy, pediatric patient, Petruckevitch A, Prospective Study, Reproducibility, The American journal of hospice & palliative care., Uncertainty
Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)
Tags: 2020, Adult, Blume E, Cardiology, Caucasian, Child, Cohort Analysis, conference abstract, Controlled Study, Conversation, Decision Making, Expectation, Female, Feraco A, Goldberg S, heart single ventricle, high school, Hospitalization, Hospitalized Child, Human, Infant, Intubation, Journal of Pain and Symptom Management, Length Of Stay, Major Clinical Study, Male, March 2020 List, married person, Medical Record Review, Miller M K, Morell E, Mother, Prognosis, Prospective Study, pulmonary hypertension, pulmonary vein stenosis, Recall, Reichman J, Sahakian L, Sleeper L, Young Adult
Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)
Tags: 2020, Adult, Central Nervous System, Child, Chromosome, Chronic Disease, conference abstract, Data Analysis, DeCourcey D, Dyspnea, Female, Human, Journal of Pain and Symptom Management, Kao P C, Ma C, Major Clinical Study, Male, March 2020 List, Marcus K, Medical Technology, Pain, Prospective Study, Wolfe J, Young Adult
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
Tags: 2020, Bereavement Support, Bustamante G, Child, conference abstract, Controlled Study, Convenience Sample, Demography, Female, financial management, Gender, Grunauer M, Health Care Personnel, high income country, Human, Journal of Pain and Symptom Management, Male, March 2020 List, Neonatal Intensive Care Unit, Newborn, Newborn Death, Palliative Therapy, patient coding, Pediatric Intensive Care Unit, Perception, Prospective Study, Questionnaire, Statistical Significance, World Bank, Zambrano K
The 'good death' in pediatric oncology
Tags: 2019, Adult, Advanced Cancer, advanced practice provider, Aged, avoidance behavior, Barton K, Childhood Cancer, Clergy, Clinical Article, Cohort Analysis, conference abstract, Content Analysis, Controlled Study, Female, genetic transcription, Human, Male, Medical Staff, music, Oncology 2019 List, Pediatric Blood and Cancer, Pediatric Hospital, physiotherapist, Prospective Study, Rosenberg A, Semi Structured Interview, Software, sudden death, Taylor M, Terminal Care, Young Adult
Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes
Tags: 2020, Analgesia, Article, Boyle P J, Child, Clinical Article, Comfort, Controlled Study, Expectation, Female, Human, Lee B K, Male, Marcus K J, Oncology 2019 List, Palliative Therapy, Pediatric Blood and Cancer, pediatric patient, Perception, Prospective Study, Quality Of Life, Questionnaire, radiation oncology, Radiotherapy, Side Effect, Wolfe J, Zaslowe-Dude C
Perceptible end-of-life signs in PICU, a prospective study
Tags: 2019, Annals of Intensive Care, Artificial Ventilation, bradycardia, Brain Death, Caregiver, Cause Of Death, Child, Chronic Disease, Clinical Article, conference abstract, cyanosis, Drug Withdrawal, edema, February 2020 List, Human, Hypotension, Le Bourgeois F, Male, Naudin J, Neurologic Disease, pallor, Pediatric Intensive Care Unit, petechia, Pierron C, Poncelet G, Prospective Study, respiratory failure, skin color, Sommet J, time of death
Otorhinolaryngological, Audiovestibular and swallowing manifestations of patients with Niemann-Pick disease Type C
Tags: 2016, Adolescent, Aksoy S, Akyol U, Article, aspiration scale, auditory response, Balance disorders, body equilibrium, characteristics, Child, Clinical Article, Controlled Study, Demir N, Dysphagia, Endoscopy, feeding difficulties, Female, Flexible endoscopy, hearing, hearing impairment, Hearing problems, Human, International Journal of Pediatric Otorhinolaryngology, Kuscu O, Male, Niemann Pick disease/di [Diagnosis], Niemann-Pick Disease, NPC, Otorhinolaryngology, penetration, postural imbalance, Preschool Child, Priority Journal, Prospective Study, pure tone audiometry, School Child, Senirli R T, stabilography, Swallowing, Swallowing disorders, tone and motor problems, Topcu M, Trajectory, vestibular system, Yigit O
Sleep abnormalities in untreated patients with mucopolysaccharidosis type VI
Tags: 2011, American Journal of Medical Genetics Part A, anamnesis, apnea, Article, Azevedo A C, Barrios P, breathing difficulties, characteristics, Child, Clinical Article, Clinical Feature, Controlled Study, Cross-sectional Study, Dalcin P, disease association, Disease Severity, Doppler echocardiography, Fagondes S, Female, Giugliani R, Glycosaminoglycans, Human, John A, Lysosomal storage diseases, lysosome storage disease, macroglossia, Male, Maroteaux Lamy syndrome, Menna-Barreto S, Morquio syndrome, MPSVI, Mucopolysaccharidosis, oxygen saturation, oxygen/ec [Endogenous Compound], physical examination, pigeon thorax, Polysomnography, Preschool Child, Prevalence, Priority Journal, Prospective Study, pulmonary hypertension, Schwartz I, Sleep apnea, sleep apnea syndrome/di [Diagnosis], sleep disorder, snoring, Trajectory, witnessed apnea
The Incidence and Evolution of Parkinsonian Rigidity in Rett Syndrome: A Pilot Study
Tags: 2016, 5 hydroxyindoleacetic acid, Adolescent, Adult, Age, ankle, Article, Barrowman N, Canadian Journal of Neurological Sciences, Cerebrospinal Fluid, characteristics, Child, Cohort Analysis, Cross-sectional Study, Disease Severity, Dopamine, Dystonia, Female, genetic susceptibility, homovanillic acid, homovanillic acid/ec [Endogenous Compound], Human, Humphreys P, hva, Incidence, Major Clinical Study, mecp2, methyl CpG binding protein 2, methyl CpG binding protein 2/ec [Endogenous Compound], missense mutation, mobilization, muscle rigidity, muscle tone, musculoskeletal disease assessment, neck, parkinsonism, Pharmacokinetics, Pilot Study, Priority Journal, Prospective Study, Quantitative Study, Rett syndrome, Rett syndrome rigidity distribution score, rigidity, scoring system, Speech, tone and motor problems, Trajectory, walking difficulty
Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
Tags: 2019, anxiety, Article, Brumarie L, Callahan K, Child Parent Relation, Cohort Analysis, Comfort, Congenital Heart Disease, Controlled Study, emotional attachment, Female, Health Care Quality, Human, Infant, Journal of perinatology : official journal of the California Perinatal Association., Male, Mental Stress, Newborn, November 2019 List, Palliative Therapy, Parravicini E, Prospective Study, Schechter S, Steinwurtzel R
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Tags: 2019, August 2019 List, Barnerias C, Cances C, Caregiver, Chabrol B, Child, Clinical Research, conference abstract, Controlled Study, Cuisset J M, Death, Desguerre I, Developmental Medicine and Child Neurology, Drug Therapy, Female, France, Gastrostomy, History, Hully M, Human, Intensive Care Unit, Isapoff A, Major Clinical Study, Male, new drug, Noninvasive Ventilation, nusinersen, nutrition supplement, Palliative Therapy, Physician, Prospective Study, Rivier F, Ropars J, Sabouraud P, Sedation, Sedative Agent, standardization, Vuillerot C, Werdnig Hoffmann disease
Talking to parents about their preferences for their child's place of death: A prospective study
Tags: 2018, achievement, Advanced Cancer, Al-Khabbaz E, Archives of Disease in Childhood, Bluebond-Langner M, Case Study, Child, Clinician, conference abstract, Craig F, Death, Dinsdale A, Female, government, Hematologic Malignancy, Henderson E, Hospice, Human, Langner R, Major Clinical Study, March 2019 List, Multidisciplinary team, outcome assessment, Palliative Therapy, Patient Care, Peake J, Prospective Study, social aspect, solid malignant neoplasm
Epidemiology of death in paediatric intensive care units (PICUS) in a developing country
Tags: 2018, Artificial Ventilation, Brain Death, Cause Of Death, Child, Chuah S L, conference abstract, Controlled Study, Decision Making, developing country, Developing World 2018 List, Drug Withdrawal, Female, Gan CS, Ho AMM, Human, inotropic agent, Isa MR, Jalil R, Length Of Stay, Life Sustaining Treatment, liver failure, Lum LC, Major Clinical Study, Male, Mortality Rate, organ donor, Palliative Therapy, Pediatric Critical Care Medicine, Pediatric Intensive Care Unit, Prospective Study, Resuscitation, Secondary Analysis, Tang SF, Teh K H, Total Quality Management, Zainal Abidin AS
Opinions of Israeli neonatologists about life and death decisions in neonates
Tags: 2018, Adult, Age, Article, Bin-nun A, Demography, disabled person, Disease Severity, Dying, Ethnicity, Family Attitude, Female, Health Care Cost, Human, Israel, Israeli, Journal Of Perinatology, Kasirer MY, Male, Medical Decision Making, Medical Ethics, medicolegal aspect, Middle Aged, Mimouni FB, Neonatal Intensive Care Unit, Neonatologist, Normal Human, November 2018 List, Personal Experience, Physician Attitude, Prospective Study, psychological well being, Questionnaire, Religion, Schimmel MS, sex difference, Simulation, Terminal Care
Changing times-PICU and palliative care
Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team
Tags: 2018, Analysis of Variance, April 2018 List, Article, Attention, Bace S, Child, daily life activity, Darnall C, Diagnosis, Female, Human, Journal of Palliative Medicine, Longitudinal Studies, longitudinal study, Macfadyen A, Major Clinical Study, Male, Metronidazole, minimal clinically important difference, Only Child, Palliative Care, Palliative Therapy, physical model, Prospective Study, Quality Of Life, Statistical Significance, Vail C, Weaver M, Wichman C
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Tags: 2018, Adult, April 2018 List, Article, Byrne M, Child Parent Relation, Clinical Article, Daho M, Female, fluid intake, Foe G, Health Care Delivery, Health Care Quality, health program, Health Survey, Human, Infant, Infant Nutrition, Journal Of Perinatology, kangaroo care, Life Expectancy, life limiting disease, Male, Newborn, Newborn Care, Parental Attitude, parental behavior, Parravicini E, Patient Comfort, Peer Review, physical disease, Prospective Study, Self Report, standardization, Steinwurtzel R
Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
Tags: 2018, Child, Clinical Article, Cohort Analysis, Comfort, Communication Skill, Critical Care Medicine, Curriculum, Death, Flint H, Human, Intensive Care, Legal Aspect, Likert scale, March 2018 List, maturation, Palliative Therapy, Poynter-Wong S, Prospective Study, Role Playing, Short SR, Simulation, Spike
Palliative radiation therapy for pediatric patients: Parental perceptions
Tags: 2017, Analgesia, Apkon D, Brain, Breathing, Cancer Staging, Child, Comfort, December 2017 List, Disease Course, Expectation, Female, Human, Institutional Review, International Journal Of Radiation Oncology Biology Physics, Lee BKY, Male, Marcus KJ, Palliative Therapy, Perception, Prevention, Prospective Study, Quality Of Life, Questionnaire, Radiotherapy, Spinal Cord Compression, Statistics, Wolfe J
A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Tags: 2017, BMC Palliative Care, Bosman DK, Caron HN, Case Management, Child, Clergy, Colenbrander DA, Controlled Study, Grootenhuis MA, Hospital, Human, Jagt Van Kampen CT, Kars MC, Major Clinical Study, March 2017 List, Nurse, Palliative Therapy, Prospective Study, Psychologist, Questionnaire, Schouten-Van Meeteren AYN, Social Worker