Browse Items (357 total)
- Tags: 2016
Validating the Rett Syndrome Gross Motor Scale
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
Children with life-shortening conditions are denied the support they need, says charity
Trainee Experience And Understanding In Paediatric Palliative Care
Acknowledged Dependence And The Virtues Of Perinatal Hospice
Temporal and spatial gait parameters in children with Cri du Chat Syndrome under single and dual task conditions
Tags: 2016, Abbruzzese L D, Aubuchon M, characteristics, Children, concurrent task, Cri du Chat Syndrome, Dual-task, Gait, Gait & Posture, motor, Neurosciences & Neurology, older-adults, Orthopedics, parkinsons-disease, performance, Rao A K, Salazar R, Sport Sciences, tone and motor problems, Trajectory, Walking
Lower Urinary Tract Symptoms and Incontinence in Children with Pompe Disease
A Comparison Of Continuing Bonds Over Time In Bereaved Parents And Siblings After The Death Of A Child
The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
Tags: 2016, Academic Medical Centers, Adolescent, Ali AM, Cancer Care Facilities, Child, Critical Illness, Developing Countries, Female, Hematologic Neoplasms/complications/ Mortality/therapy, Humans, Infant, Intensive Care Units, Journal Of Pediatric Hematology/oncology, Male, Mohammed MM, Multiple Organ Failure/etiology, Oncology 2017 List, Pediatric, Preschool, Prognosis, Respiratory Insufficiency/etiology, Retrospective Studies, Sayed HA, Sepsis/etiology, Tertiary Care Centers, Treatment Outcome
Hospitalization Outcomes In Children With End Of-life Care Measures
Consistency in end of life care
Tags: 2016, Adolescent, Allen D, August 2017 List, Child, Child Preschool, Communication, Decision Making, Hospice And Palliative Care Nursing/ Standards, Humans, Infant, Nurse-patient Relations, Nursing Children and Young People, Patient Participation, Pediatric Nursing/ Standards, Practice Guidelines As Topic
Can Parents Refuse A Potentially Lifesaving Transplant For Severe Combined Immunodeficiency?
The Role Of The Emergency Department In Pediatric Palliative Care
healthcare providers’ perspectives regarding their
role in pediatric palliative care.
Methodology: A qualitative study was conducted at the
CHU Sainte-Justine from January to April 2016.…
Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3)…
Tags: 2016, Annie Janviera, Barbara Farlow, Birth, Child, Communication, Composite End-points, Congenital Anomalies, Disability, Down-syndrome, Empathy, End-of-life Decision Making, Extreme Prematurity, Extremely Preterm Infants, Family-centered Care, Gestational Age, Jason Baardsnesf, Keith J Barringtona, Life-sustaining Interventions, Neonatal Intensive Care Unit, Neurodevelopmental Outcomes, Obstetrics & Gynecology, October 2016 List, Of-life Decisions, Palliative Care, Parents, Pediatrics, Rebecca Pearceg, Screening, Seminars in Perinatology
Improvements In Communication And Relationship Building Are Essential
Legal and ethical issues in neonatal nursing
Tensions At The End Of Life In Pediatrics: Actors, Causes, Coping Strategies And Remedies
hospitals after a decision to withhold or withdraw
life sustaining interventions. Tensions and conflicts
at the end of life (EOL) are not rare in pediatric
hospitals.
Objective: To investigate how…
Religion And Spiritual Care In Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual And Religious Inquiry
Palliative Care. Workforce Development
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Tags: 2016, 50-56-6 (oxytocin), 51-61-6 (dopamine), 54577-94-5 (oxytocin), 60118-07-2 (endorphin), 62-31-7 (dopamine), Adult, Animal Experiment, Animal Model, anxiety, Bach C, Blood Pressure, Cancer Patient, Cancer Therapy, Cerebrovascular Accident, Clinical Practice, Distress Syndrome, Dog, Dopamine, Ear, Endogenous Compound, Endorphin, Family Study, Female, Gene Expression, Happiness, Heart Rate, Hospice, Hospital Patient, Human, Human Versus Animal Comparison, Infusion, Journal Of Psychosocial Oncology, Male, Narrative, Nonhuman, Oncology, Oncology 2017 List, Oxytocin, Pain, Palliative Therapy, Pet Therapy, Program Development, Recreation, Skill, Social Support, Social Work Practice, Storytelling, Symptom, Total Quality Management, Trust, Volunteer, Waiting Room
"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care
Tags: 2016, Adolescent, Adult, Aged, Australia, Badger S, December 2017 List, Female, Honey A, Human, Macleod R, Male, Middle Aged, Occupational Therapy, Palliative & Supportive Care, Palliative Therapy, Procedures, Professional-patient Relationship, Psychology, Qualitative Research, Quality Of Life, Standards, Very Elderly
Retrospective cross-sectional review of survival rates in critically ill children admitted to a combined paediatric/neonatal intensive care unit in Johannesburg, South Africa, 2013-2015
Tags: 2016, Argent A, Ballot DE, Birth Weight, Bmj Open, Cause Of Death, Child, Chirwa T, Cooper PA, Critical Illness/ Mortality, Cross-sectional Studies, Davies VA, Female, Health services administration & management, Hospitalization/ statistics & numerical data, Humans, Infant, Infant Newborn, Infant Newborn Diseases/ mortality, Infant Very Low Birth Weight, Intensive Care Units Neonatal, January 2018 List, Male, Mer M, Neonatology, Patient Discharge/ statistics & numerical data, Population Surveillance, Retrospective Studies, Risk Factors, South Africa/epidemiology, Survival Rate/ trends
Storytelling In The Early Bereavement Period To Reduce Emotional Distress Among Surrogates Involved In A Decision To Limit Life Support In The Icu: A Pilot Feasibility Trial
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative…
Tags: 2016, Arnold RM, Barnato AE, Bereavement, Complicated Grief, Critical Care Medicine, Critical Illness, Critically-ill, Depression, Dew MA, End, Family-members, Intensive Care, Intensive-care-unit, Nunez ER, Posttraumatic-stress-disorder, Reynolds CF, Scale, Schenker Y, Self-regulation, September 2016 List, Surrogate Decision Making, Terminal Care, Tiver G
Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved…
Tags: 2016, Adult, American Journal of Hospice and Palliative Medicine, Barnett MD, Communication, Curriculum, Female, Health Knowledge Attitudes Practice, Hospitals Pediatric/organization & Administration, Humans, Internship And Residency/methods, Male, Maurer SH, October 2016 List, Pain Management, Pain Measurement, Palliative Care, Palliative Care Curriculum, Palliative Care Education, Pediatric Palliative Care, Pediatric resident, Pediatrics/education, Pilot Projects, Pocket cards, resident education, Wood GJ
Physician Communication In Pediatric End-of-life Care: A Simulation Study
Tags: 2016, American Journal of Hospice and Palliative Medicine, Bateman LB, Clair Jeffrey Michael, Dure Leon S, End-of-life Communication, January 2017 List, Needham Belinda L, Palliative Care, Pediatric End-of-life Care, Pediatrics, Physician–parent Communication, Qualitative Methods, Simulation, Therapeutic Processes, Tofil Nancy M, White Marjorie Lee
A Qualitative Examination Of Physician Gender And Parental Status In Pediatric End-of-life Communication
Tags: 2016, Bateman LB, Health Communication, July 2016 List
Deep Brain Stimulation in Rare Inherited Dystonias
Tags: 2016, Adolescent, Adult, Aged, Aquino C C, Article, ataxia telangiectasia, ataxia telangiectasia/di [Diagnosis], ataxia telangiectasia/dt [Drug Therapy], atypical dopa responsive dystonia/di [Diagnosis], atypical dopa responsive dystonia/dt [Drug Therapy], Baclofen/dt [drug Therapy], Beaulieu-Boire I, benzodiazepine derivative/dt [Drug Therapy], Brain Depth Stimulation, Brain Stimulation, Burke Fahn Marsden Dystonia Rating Scale, cerebellar ataxia/di [Diagnosis], cerebellar ataxia/dt [Drug Therapy], Child, chorea/di [Diagnosis], chorea/dt [Drug Therapy], Clinical Article, clinical assessment, Clinical Effectiveness, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], deep brain stimulation, diazepam/dt [Drug Therapy], disease duration, Disease Severity, Dystonia, dystonia/di [Diagnosis], dystonia/dt [Drug Therapy], Dystonic Disorder/su [surgery], dystonic disorder/th [Therapy], entacapone/cb [Drug Combination], entacapone/dt [Drug Therapy], escitalopram/dt [Drug Therapy], extrapyramidal syndrome/di [Diagnosis], extrapyramidal syndrome/dt [Drug Therapy], Fallis M, Fasano A, Follow Up, gabapentin/dt [Drug Therapy], haloperidol/dt [Drug Therapy], Hodaie M, Human, Inherited dystonia, Kalia S K, Lang A E, levodopa/dt [Drug Therapy], lorazepam/dt [Drug Therapy], Lozano A, MCM deficiency, methylmalonic aciduria/di [Diagnosis], methylmalonic aciduria/dt [Drug Therapy], Middle Aged, mirtazapine/dt [Drug Therapy], Moro E, motor dysfunction assessment, NCL, Nemaline myopathy, nemaline myopathy/di [Diagnosis], nemaline myopathy/dt [Drug Therapy], neuronal ceroid lipofuscinosis/di [Diagnosis], neuronal ceroid lipofuscinosis/dt [Drug Therapy], olanzapine/dt [Drug Therapy], outcome assessment, Phenotype, Poon Y Y, pramipexole/cb [Drug Combination], pramipexole/dt [Drug Therapy], Preoperative Care, Priority Journal, Rating Scale, risperidone/dt [Drug Therapy], School Child, selegiline/cb [Drug Combination], selegiline/dt [Drug Therapy], Surgery, surgical intervention, tetrabenazine/dt [Drug Therapy], therapy effect, time to treatment, tizanidine/dt [Drug Therapy], tone and motor problems, trazodone/dt [Drug Therapy], Treatment, trihexyphenidyl/cb [Drug Combination], trihexyphenidyl/dt [Drug Therapy], Trisomy/di [diagnosis], trisomy/dt [Drug Therapy], Wilson disease/di [Diagnosis], Wilson disease/dt [Drug Therapy], woodhouse sakati syndrome/di [Diagnosis], woodhouse sakati syndrome/dt [Drug Therapy], x trisomy/di [Diagnosis], x trisomy/dt [Drug Therapy]
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or…
Partnership Working Between Hospice And Children's Community Nursing Teams.
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…
Tags: 2016, Acute Pain/therapy, Adolescent, Adult, Advance Directives, Aged, Attitude Of Health Personnel, Bidet G, Canada, Child, Child Preschool, Daoust L, Ducruet T, Duval M, Female, Humans, Humbert N, Infant, Infant Newborn, Journal of Palliative Medicine, Male, March 2016 List, Medical Staff Hospital/psychology, Middle Aged, Nursing Staff Hospital/psychology, Palliative Care/standards, Pediatric Nursing/standards, Practice Guidelines As Topic, Respiratory Distress Syndrome Adult/therapy, Surveys And Questionnaires, Toledano B, Young Adult
Diagnosis and Management of Drooling in Children With Progressive Dystonia: A Case Series of Patients With MEGDEL Syndrome
Tags: 2016, adenotonsillectomy, advice to interrupt tongue protrusion, antireflux medication, bilateral submandibular gland excision, Blommaert D, Erasmus C E, feeding advice, feeding difficulties, Hoogen F J A van den, Journal of Child Neurology, MEGDEL syndrome, parotid duct ligation, pharmacological intervention, surgical intervention, van Hulst K, Wortmann S B
'I Have to Live with the Decisions I Make': Laying a Foundation for Decision Making for Children with Life-limiting Conditions and Life-Threatening Illnesses
Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype
Tags: 0 (Methyl-CpG-Binding Protein 2), 2016, Adolescent, Adult, American Journal of Medical Genetics Part A, Anderson B, Boban S, characteristics, Child, Child Preschool, Downs J, Epilepsy/di [diagnosis], Epilepsy/ge [Genetics], Epstein A, Genetic Association Studies, Genotype, Humans, Infant, Infant Newborn, Leonard H, Methyl-CpG-Binding Protein 2/ge [Genetics], Middle Aged, Murphy N, Mutation, Phenotype, Rett syndrome, Rett Syndrome/di [Diagnosis], Rett Syndrome/ge [Genetics], Rett Syndrome/pp [Physiopathology], Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/di [Diagnosis], Sleep Wake Disorders/ge [Genetics], Trajectory, Wong K, Young Adult
Practical Recommendations For Diagnosis And Management Of Respiratory Muscle Weakness In Late-onset Pompe Disease
Tags: 2016, Adult, Barrot Cortés E, Boentert M, Confalonieri M, Cough Assistance, Glycogen Storage Disease Type Ii/diagnosis, Glycogen Storage Disease Type Ii/pathology, Glycogen Storage Disease Type Ii/therapy, Humans, Infant, International Journal of Molecular Sciences, Jones HN, Mechanical Ventilation, Mellies U, Muscle Weakness/pathology, Muscle Weakness/therapy, Neuromuscular Disorders, October 2016 List, Pompe Disease, Prigent H, Respiratory Function Tests, Respiratory Insufficiency/therapy, Respiratory Muscle Weakness, Respiratory Muscles/pathology, Simonds AK, Surveys And Questionnaires, Várdi K, Wenninger S
Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train…
Tags: 2016, Arnold RM, Boss RD, Communication, Critical Illness/psychology, December 2016 List, Decision Making, Donohue PK, Empathy, Female, Humans, Infant Newborn, Intensive Care Units Neonatal, Larson SM, Male, Parents/psychology, Pediatric Critical Care Medicine, Professional-family Relations, Qualitative Research, Roter DL, Terminal Care/psychology
Development and validation of the Communicating with Family about Brain Death Scale
Tags: 2016, Adolescent, Adult, Attitudes, Brain Death/ diagnosis, brain-dead organ donation, Bresnahan M, communicating with family about brain death, Communication, Cross-sectional Studies, Decision Making, End-of-life Decision Making, Factor Analysis, Family, Female, first-person organ donation consent laws, Health Knowledge, Humans, Journal Of Health Psychology, Male, March 2018 List, Middle Aged, misconceptions about brain death, Practice, Reproducibility of Results, statistical, Tissue and Organ Procurement, Young Adult, Zhuang J
Improving Training In Palliative Care For Pediatric Fellows -- A Simulation-based Multi-institution Trial.
Describe different methods of palliative care education,
including simulation-based education and
didactic education.
Delineate differences between pediatric fellow
self-assessment data and external reviewer data
of fellow…
Cause Of Death Of Infants And Children In The Intensive Care Unit: Parents’ Recall Vs Chart Review.
More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending…
Compassionate Extubation In The Home: It Takes A Team
•Describe steps to take before starting the procedure to ensure comfort for the patient and family.
•Identify likely symptoms during and after the extubation and their management.
•Describe ways to support family and staff during and after…