Browse Items (27 total)
- Tags: Preschool Child
I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
Tags: 2022, Adolescent, Adult, Article, August 2022 List, biotechnology, Blake L, Bray L, Carter B, Child, Chronic Patient, Conceptual Framework, Controlled Study, Decision Making, Dickinson A, disabled person, England, Father, Female, Health And Social Care In The Community, Heat, Home Care, Human, Human Experiment, Interview, Male, Mitchell TK, Mother, Patient Care, Preschool Child, regeneration, Scotland, Thematic Analysis, thinking, Wales, Wellbeing
Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Advance Care Planning, Amin R, Beatty M, Bereavement, Caregivers, Child, Cohen E, Hellmann J, Infant, Interviews As Topic, JAMA Network Open, Lord S, Male, Moore C, multimorbidity, Netten K, Orkin J, Parents, Preschool Child, Rapoport A, Terminal Care
Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Academic Medical Centers, Adolescent, Attitude To Health, Child, Chronic Disease, Continuity Of Patient Care, Freund KM, Health Knowledge, Attitudes, Practice, Health Services Accessibility, Hospital Pediatrics, Infant, Interviews As Topic, Krcmar R, Leary JC, LeClair AM, Male, Newborn Infant, Parents, patient readmission, Preschool Child, Qualitative Research, Yoon GH
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Tags: 2021, Adolescent, Age Factors, Antiel RM, Biopsy, Blinman TA, Camazine MN, Catheterization, Child, Chronic Disease, Eghtesady P, Ethnicity, February 2022 List, Feudtner C, Hall M, Hospitalization, Infant, International Classification of Diseases, Lam SK, Nance ML, Newborn Infant, pediatric hospitals, Pediatrics, Preschool Child, Prosthesis Implantation, Race Factors, Retrospective Studies, Salvage Therapy, Surgical Procedures, Operative, Terminal Care, Traynor MD, United States, Young Adult
Care Coordination Program for Children With Complex Chronic Conditions Discharged From a Rural Tertiary-Care Academic Medical Center
Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study
Tags: 2020, Adolescent, American Journal of Critical Care, Aniciete DY, Attitude Of Health Personnel, August 2021 List, Brown M, Charleston E, Child, Ciolino JD, Clayman ML, Communication, Decision Making, Emotions, Family/psychology, Fragen P, Infant, Intensive Care Units Pediatric/organization & administration/standards, Jones V A, Malakooti M, Michelson KN, Parents/psychology, Patient Discharge, Persell SD, Pilot Projects, Preschool Child, Professional-family Relations, Rychlik K, Socioeconomic Factors, Sorce LR, Spadino P, White D
Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program
Tags: 2020, Adolescent, Advanced Cancer, Almulla H A, Alzawad Z, anxiety, Article, Child, Child Parent Relation, Controlled Study, Depression, Disease Course, Distress Syndrome, Feasibility Study, Griffith K A, Hospice, Human, Journal of Palliative Medicine, Lewis F M, Loggers E T, Metastasis, Nurse, Oncology 2020 List, Palacios R, Palliative Therapy, Phillips F, Preschool Child, program impact, psychological adjustment, Self Concept, Shands M E, Skill, Telephone, Tercyak K P, tumor-related gene, Zahlis E H
Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)
Tags: 2020, Caliboso M, Child, Cohort Analysis, conference abstract, Controlled Study, Demography, Female, Hospice, Human, Insurance, Journal of Pain and Symptom Management, Lindley L, Lotstein D, Major Clinical Study, Male, March 2020 List, Neonatal Intensive Care Unit, Nervous System, Palliative Therapy, Patient Referral, Pediatric Hospital, Preschool Child, Retrospective Study, Speech, Total Quality Management, Wolfe J
Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems
Tags: 2019, Alcorn S R, Anorexia, Article, bradycardia, Brain Metastasis, Cancer Palliative Therapy, cancer radiotherapy, Cancer Survival, Chen M J, Chen Q, Child, Childhood Cancer/rt [radiotherapy], Clinical Outcome, Clinical Practice, Cohort Analysis, Figueiredo M L S, Follow Up, Human, Ladra M, leukemia/rt [Radiotherapy], lymphoma/rt [Radiotherapy], Major Clinical Study, mucosa inflammation, neuroblastoma/rt [Radiotherapy], Oncology 2019 List, Opiate/dt [drug Therapy], opiate/pv [Special Situation for Pharmacovigilance], osteosarcoma/rt [Radiotherapy], Pain/dt [drug Therapy], Palliative radiation therapy, Palliative Therapy, pediatric patient, Pediatric radiation therapy, Preschool Child, Priority Journal, radiation dermatitis, Radiation Dose Fractionation, radiation induced neoplasm, Radiotherapy and Oncology, Rao A D, rectum hemorrhage, Sehgal S, Terezakis S A, Treatment Outcome, treatment response, tumor growth, Villar R, Yegya-Raman N
Functional and gait assessment in children and adolescents affected by Friedreich's ataxia: A one-year longitudinal study
Tags: 2016, Adolescent, Article, assessment of humans, Bella G D, Bertini E, Castelli E, characteristics, Child, Clinical Article, Controlled Study, Female, Friedreich's ataxia, functional assessment, Gait, Gait Analysis and the Scale for the Assessment and Rating of Ataxia, Gazzellini S, Human, Lispi M L, longitudinal study, Male, Petrarca M, Pisano A, PLoS One, Preschool Child, Reliability, step length, stride length, tone and motor problems, Trajectory, Vasco G, Walking, walking velocity, Zazza M
Development, behavior, and biomarker characterization of Smith-Lemli-Opitz syndrome: An update
Tags: 2016, 7 dehydrocholesterol/ec [Endogenous Compound], 8 dehydrocholesterol/ec [Endogenous Compound], adaptive behavior, Adolescent, Adult, Aggression, Albert P, Article, Autism, automutilation, Behavior, Bianconi S, Bukelis I, Case Study, cerebrospinal fluid level, characteristics, Child, Child Rearing, childhood, cholesterol/ec [Endogenous Compound], Clinical Article, Cognition, delayed development, development, Developmental delay, Farmer C, Female, Human, Intelligence Quotient, Interpersonal Communication, Joseph L, Journal of Neurodevelopmental Disorders, Lanham D, Male, Observational Study, Parent, Porter F D, Preschool Child, Priority Journal, problem behavior, Sarphare G, Smith Lemli Opitz syndrome, Smith-Lemli-Opitz syndrome, Socialization, Stanford-Binet Intelligence Scale, Sterols, Swedo S, Thurm A, Tierney E, tone and motor problems, Trajectory, Unclassified Drug, Walking, Wassif C A, Wheeler C, Young Adult
Sleep-disordered breathing and its management in children with achondroplasia
Tags: 2017, achondroplasia, adenotonsillectomy, Amaddeo A, American Journal of Medical Genetics Part A, apnea hypopnea index, apnea monitoring, Baujat G, BiPAP, bone dysplasia, breathing difficulties, cervical decompression, Child, Clinical Article, Cormier-Daire V, Couloigner V, CPAP, De Sanctis L, ENT surgery, Fauroux B, Human, James S, Khirani S, Michot C, Neurosurgery, obstructive sleep apnea, physical interventions, Polysomnography, Preschool Child, Prevalence, Retrospective Study, School Child, Sleep disordered breathing, Surgery, surgical interventions, Tenconi R, upper respiratory tract, Zerah M
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
Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1
Tags: 2 hydroxypropyl beta cyclodextrin, 2018, 94035-02-6 (2 hydroxypropyl beta cyclodextrin), Adolescent, Adult, Alter K, Article, balance impairment, body equilibrium, case control study, characteristics, Child, Clinical Article, clinical evaluation, Comparative Study, coordination disorder, disease severity assessment, Farhat N, Female, gait disorder, Human, Human Development, intervention study, Journal of Child Neurology, Keener L A, Male, molecular stability, motion analysis system, Neurologic Examination, Niemann Pick disease, NIH NPC Neurologic Severity Scale, NPC, outcome assessment, performance, Porter F, Preschool Child, Priority Journal, Research, Retrospective Study, Sansare A, School Child, scoring system, spatiotemporal analysis, stabilography, Stanley C, tone and motor problems, Trajectory, Upper limb, vts 270, Young Adult, Zampieri C
Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities
Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]
Feed-induced Dystonias in Children with Severe Central Nervous System Disorders
Tags: 1134-47-0 (baclofen), 2017, acquired brain injury, Adolescent, Article, Baclofen/dt [drug Therapy], baclofen/tl [Intrathecal Drug Administration], Campbell D I, Case Study, central nervous system disease, Cerebral Palsy, Child, Clinical Article, Constipation, Dystonia, dystonia/dt [Drug Therapy], feed induced dystonia, feed induced dystonia/dt [Drug Therapy], feeding difficulties, Female, Gastroesophageal Reflux, Gastroscopy, GERD, Human, Hydrocephalus, Hyperglycinemia, Infant, infantile spasm, intestinal dysmotility, intestine motility, Intestine Obstruction, Journal Of Pediatric Gastroenterology And Nutrition, Male, microcephaly, Mordekar S R, motor dysfunction, MPSIII, onset age, Parenteral Nutrition, Percutaneous Endoscopic Gastrostomy, peristalsis, pharmacologic intervention, Practice Guideline, Preschool Child, Priority Journal, reflux esophagitis, Retrospective Study, Rett syndrome, Sanfilippo syndrome, School Child, tone and motor problems, total parenteral nutrition, Velayudhan M, West syndrome
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
Balloon dilatation in esophageal strictures in epidermolysis bullosa and the role of anesthesia
Tags: 2017, Adolescent, Adult, Anesthesia, Article, Ates U, Balloon dilatation, Can O S, Child, Clinical Article, Clinical Effectiveness, colon interposition, digestive endoscope, Dindar H, Diseases of the Esophagus, Dysphagia, endoscopic balloon dilatation, epidermolysis bullosa, Ergun E, esophagus balloon, esophagus perforation, esophagus stenosis/co [Complication], esophagus stenosis/th [Therapy], feeding difficulties, Female, Gastrostomy, Gollu G, Human, Male, Patient Safety, Preschool Child, Priority Journal, Retrospective Study, School Child, surgical intervention, Young Adult
Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease
Tags: 2017, Aggression, anxiety disorder/dm [Disease Management], Article, attention disturbance/dm [Disease Management], behavioral problems, brain atrophy/dm [Disease Management], characteristics, Child, Child Behavior, childhood disease/dm [Disease Management], Clinical Article, Comorbidity, daily life activity, delinquency, depression/dm [Disease Management], Disease Severity, drug resistant epilepsy/dm [Disease Management], drug resistant epilepsy/dr [Drug Resistance], Emotion, Eom S, Female, Human, intellectual impairment/dm [Disease Management], Intelligence, Intelligence Quotient, lactic acidosis/dm [Disease Management], Lee Y M, Leigh disease/dm [Disease Management], Leigh syndrome, Male, MELAS syndrome, MELAS syndrome/dm [Disease Management], mitochondrial disorders, muscle disease/dm [Disease Management], nervous system development, neuroimaging, nuclear magnetic resonance imaging, Parental Stress, Pediatric Neurology, postnatal depression/dm [Disease Management], Preschool Child, Priority Journal, problem behavior/dm [Disease Management], Prognosis, psychomotor development, Quality Of Life, sleep disorder/dm [Disease Management], social problem, somatization/dm [Disease Management], thinking impairment/dm [Disease Management], Trajectory
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
Tags: 2019, Adolescent, Adult, Age, Aged, America, Amin R, amyotrophic lateral sclerosis, amyotrophic lateral sclerosis/ep [Epidemiology], Animals, APEC countries, Article, August 2019 List, Bai Y, Canada, Child, childhood disease/ep [Epidemiology], childhood diseases, Children, Chordata, Cohort Analysis, Cohort Studies, Commonwealth of Nations, Controlled Study, Data Base, death rate, Developed Countries, Disease Course, disease prevalence, Disease Progression, Eukaryotes, Female, Gershon A, Goldstein R, Health Care, health Insurance, Hominidae, Homo, Human, Human Diseases, Incidence, Infant, International Classification of Diseases, Katz S, Leasa D, Major Clinical Study, Male, Mammals, Man, McKim D, Middle Aged, Mortality, mortality rates, muscles, neuromuscular disease/ep [Epidemiology], Neuromuscular Diseases, Neuromuscular Disorders, Nonoyama M, North America, OECD Countries, Ontario, Palliative Care, Palliative Therapy, planning, PLoS One, Population Research, Preschool Child, Prevalence, Primates, Retrospective Studies, Retrospective Study, Rose L, School Child, sclerosis, spinal muscular atrophy/ep [Epidemiology], Spine, Survival, Tandon A, trend study, Trends, Vertebrates, Young Adult
Challenges of palliative care in children with inborn metabolic diseases
Tags: 2018, Adult, Advance Care Planning, Article, Attention, Borkhardt A, Child, Cohort Analysis, Controlled Study, Decision Making, Distelmaier F, February 2019 List, Female, Gastrointestinal Symptom, gastrointestinal tract, Hoell JI, Home Visit, Human, Janssen G, Kuhlen M, Major Clinical Study, Male, Metabolic Disorder, Neurologic Disease, Orphanet Journal Of Rare Diseases, Palliative Therapy, Patient Referral, Preschool Child, Resuscitation, Retrospective Study, Warfsmann J, Young Adult
Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
Tags: 2018, acid, Adult, Cancer Patient, central nervous system cancer, Chi Square Test, Child, conference abstract, Constipation, Controlled Study, Corticosteroid, Death, Diagnosis, diazepam, diphenhydramine, drug formulation, Drug Therapy, Dyspnea, Female, Genetic Disorder, Haloperidol, Hospice Care, hospice patient, Human, hyoscyamine, Institutional Review, laxative, Length Of Stay, levetiracetam, Lorazepam, macrogol, Major Clinical Study, McPherson ML, metoclopramide, Morgan J, Morphine, Nausea, November 2018 List, ondansetron, Opiate, Pain, Paracetamol, patient information, pediatric patient, Postgraduate Medicine, Practice Guideline, Preschool Child, prochlorperazine, Retrospective Study, salbutamol, Seizure, Sera L, Unclassified Drug, vitamin
Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis
Tags: 2017, Adolescent, Article, Child, Child Death, child hospitalization, Childhood Disease, Clinical Article, Female, Health Care System, Hospice, Human, Infant, Interpersonal Communication, Janusz B, June 2018 List, Knowledge, law suit, Life Threatening illness, Male, malpractice, Palliative Medicine in Practice, Parent, Personal Experience, personal needs, physical disease, Physician, Preschool Child, Qualitative Analysis, School Child, Semi Structured Interview, Walkiewicz M
Prevalence and management of dystonia in a paediatric palliative care cohort
Tags: 2017, 302-17-0 (chloral hydrate), 4205-90-7 (clonidine), 4205-91-8 (clonidine), 57066-25-8 (clonidine), benzodiazepine derivative, Child, chloral hydrate, Clinical Article, clonidine, Cohort Analysis, Cross-sectional Study, Developmental Medicine and Child Neurology, Diagnosis, Documentation, Dystonia, England, Female, Hughes G, Human, joint, Laddie J, Lumsden DE, Male, March 2018 List, Neurology, Palliative Therapy, precancer, Preschool Child, Prevalence, Seizure, Slater T
Neurological palliative care in children
Tags: 2017, Adolescent, Adult, Child, Chromosome Aberration, Controlled Study, Female, Fuhrer M, Home Care, Hospice, Human, Icd-10, Infant, Journal Of The Neurological Sciences, Major Clinical Study, Male, March 2018 List, Metabolic Disorder, Mortality, Neoplasm, nervous system malformation, Neurology, Palliative Therapy, Preschool Child, Retrospective Study, Statistics
Paediatric palliative care in Denmark should be strengthened
Problems And Hopes Perceived By Mothers, Fathers And Physicians Of Children Receiving Palliative Care
Tags: 2015, Adolescent, Carroll K W, Child, Decision Making, Faerber J A, Father, Female, Feudtner C, Health Expectations, Hexem K R, Hill D L, Hope, Human, Human Relation, Infant, Kang T, Male, Miller V A, Mother, Newborn, Palliative Therapy, Physician, Preschool Child, Problem Solving, Psychology, Quality Of Life, September 2017 List, Young Adult