Browse Items (18 total)
- Tags: Intellectual Disability
Family experience in a regional participant contact registry for research on intellectual disability
Tags: 2014, 2023 SE1 - Parent Perspectives, Adolescent, Adult Child, Child, Conners FA, Family, Female, Hamilton JC, Humans, Infant, Intellectual and Developmental Disabilities, Intellectual Disability, Male, Middle Aged, Patient Selection, Phillips BA, Preschool, Registries, Research, Rhodes JD, Surveys And Questionnaires, Young Adult
Caring for a child with a life limiting condition: The experiences of nurses in an intellectual disability service provider
The Association Between Repetitive, Self-Injurious and Aggressive Behavior in Children With Severe Intellectual Disability
Tags: 2012, adults, Aggression, Autism spectrum disorder, Bacarese-Hamilton M, behavioral problems, challenging behavior, challenging behaviors, characteristics, de-lange-syndrome, handicap, high frequency repetitive behavior, Intellectual Disability, Journal of Autism and Developmental Disorders, learning-disabilities, Mental, Oliver C, People, Petty J, Prevalence, Psychology, psychotropic medication, repetitive behavior, risk-factors, ritualistic behavior, Ruddick L, self-injury, severe intellectual disability, Stereotyped Behavior, total population, Trajectory, young-children
Effect of hand splints on stereotypic hand behavior of three girls with Rett syndrome
Tags: 1988, Adolescent, Autistic disorder, Billingsley F F, Child, Female, finger-feeding skills, Hand, hand splints, Humans, Intellectual Disability, Naganuma G M, Neuromuscular Diseases/rehabilitation, physical intervention, Physical Therapy, Rett syndrome, splints, Stereotyped Behavior, stereotypic hand behavior, Syndrome, Thumb abduction splints, tone and motor problems
Actigraphic investigation of circadian rhythm functioning and activity levels in children with mucopolysaccharidosis type III (Sanfilippo syndrome)
Tags: 2015, Actigraphy, autistic spectrum disorders, Bigger B, Canal M, characteristics, circadian rhythms, CONTROLLED-TRIAL, disturbance, Hare D J, Intellectual Disability, Jones S, Journal of Neurodevelopmental Disorders, Light, Mahon L V, melatonin, MPSIIIA, MPSIIIB, Mucopolysaccharidosis type III, Multiple disabilities, Mumford R A, Neurosciences & Neurology, Rare Disease, Sanfilippo, Sleep, sleep disturbance/disorders, sleep problems, smith-magenis-syndrome, Therapy, Trajectory
The Rett Syndrome Behaviour Questionnaire (RSBQ): refining the behavioural phenotype of Rett syndrome
Tags: 2002, Adolescents, behavioral problems, behavioural phenotype, breathing difficulties, Cass H, Charman T, Children, cpg-binding protein-2, Diagnosis, Epidemiology, Hastings R P, Intellectual Disability, Journal Of Child Psychology And Psychiatry, mecp2, mecp2 mutations, Mental Retardation, mental-retardation, Mount R H, population prevalence, Psychiatry, Psychology, psychopathology, Questionnaire, Reilly S, Rett syndrome, RSBQ, scale development, sleep disturbance, tone and motor problems, tool development, x-chromosome inactivation
The use of pulse oximetry as a screening assessment for paediatric neurogenic dysphagia
Tags: 2008, acute stroke, characteristics, Child, Children, deglutition disorder, desaturation, Developmental Neurorehabilitation, Dysphagia, feeding difficulties, feeding problems, Francis H, Intellectual Disability, Morgan A T, neurological impairment, Neurosciences & Neurology, Omahoney R, oxygen-saturation, Patients, Pediatrics, pulse oximetry, Rehabilitation, reliably detect aspiration, respiratory patterns, Rett syndrome, Severe Cerebral-palsy, swallow, Trajectory
Incontinence in Individuals with Rett Syndrome: A Comparative Study
Tags: 2012, adaptive functioning, Adolescents, behavioral-phenotype, bowel incontinence, characteristics, Children, Comparative Study, Curfs L M G, Didden R, Disorders, enuresis, Epidemiology, fecal incontinence, females, Giesbers S, Incontinence, Intellectual Disability, Journal of Developmental and Physical Disabilities, Korzilius H, Lang R, mental-retardation, Radstaake M, Rehabilitation, Rett syndrome, Smeets E, Trajectory, urinary incontinence, von Gontard A
Sleep problems and daytime problem behaviours in children with intellectual disability
Tags: 2002, Adolescents, adults, Behavior, breathing difficulties, challenging behavior, characteristics, Children, community-based sample, daytime problem behaviour, de Vries M, Didden R, difficulties, Disorders, disturbance, Education & Educational Research, Genetics & Heredity, handicapped-children, Intellectual Disability, Journal Of Intellectual Disability Research, Korzilius H, Neurology, Neurosciences &, Psychiatry, Rehabilitation, Rett syndrome, severe learning-disabilities, sleep disturbance, sleep problem, Trajectory, Tuberous Sclerosis, urinary incontinence, van Aperlo B, van Overloop C
The behavioural phenotype of Cornelia de Lange Syndrome: a study of 56 individuals
Tags: 2007, anxiety, attention disorder, Autism, autistic-like features, Basile E, behavioral problems, behavioural phenotypes, brachmann-delange syndrome, CdLS, characteristics, Children, cognitive level, Communication, compulsive disorders, Cornelia de Lange, De Lange syndrome, Education & Educational Research, Genetics & Heredity, hyperactivity, Intellectual Disability, Intelligence, Journal Of Intellectual Disability Research, language-skills, mental-retardation, Molteni M, Neurology, Neurosciences &, nipbl, normal, Psychiatry, Rehabilitation, Self-Injurious behavior, self-injury, self-mutilative behavior, Selicorni A, Syndrome, Trajectory, Villa L
Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study
Tags: 2018, Adolescent, Child, Child Behavior, Female, Humans, Intellectual Disability, July 2019 List, Longitudinal Studies, Male, Mauskar S, Morrill D, New England, Nursing Assessment, Pain Measurement/mt [Methods], Pain/di [diagnosis], Pain/pp [Physiopathology], Parents/px [psychology], Quinn B L, Retrospective Studies, Solodiuk J C, Surveys And Questionnaires, The American journal of nursing
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Tags: 2018, August 2018 List, Child, Clinical, Connective Tissue Diseases Diagnosis, Connective Tissue Diseases Familial and Genetic In Infancy and Childhood, Connective Tissue Diseases Symptoms, Connective Tissue Diseases Therapy In Infancy and Childhood, Decision Making, Dyspnea Drug Therapy, Face Pathology, Family Education, Fibrosis, Health Education, Intellectual Disability, Intensive Care Units, Male, McHardy M, Morphine Therapeutic Use, Muscle, Mutation, Pain Management, Palliative Care, Parental Attitudes, Pediatric, Pediatric Care, Pediatrics, Referral And Consultation, Skeletal Abnormalities, Vadeboncoeur C
Parental perceived value of a diagnosis for intellectual disability (ID): a qualitative comparison of families with and without a diagnosis for their child's ID
Tags: 2009, Adult, American Journal Of Medical Genetics.Part A, Backlog, Birch PH, Child, Exploratory Behavior, Family, Female, Friedman JM, Humans, Intellectual Disability, Intellectual Disability/diagnosis/therapy, Journal Article, Makela NL, Male, Marra CA, Middle Aged, Parent caregivers, Parents, Perception, Prenatal Diagnosis, Reproducibility of Results, Social Support
Considering quality of life in end-of-life decisions for severely disabled children
Children With Intellectual Disability And Hospice Utilization
Tags: 2017, Child, Colman MB, Comorbidity, Disclose., Hospice Care, Hospice Enrollment, Hospice Length Of Stay, Hospices, Intellectual Disability, Journal of Hospice and Palliative Nursing, Length Of Stay, Lindley LC, May 2017 List, Meadows JTJr, Medicaid, Only Child, Pediatric Hospice Utilization, United States
Paediatric Palliative Care And Intellectual Disability-a Unique Context
Comparative Effectiveness of Usual Source of Care Approaches to Improve End-of-life Outcomes for Children with Intellectual Disability
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…
Tags: 2016, Adolescent, Adult, Attitude Of Health Personnel, Attitude To Health, Caregiver, Cerebral Palsy, Child, Child Preschool, de Vos MA, Decision Making, Disabled Children, Dissent And Disputes, End Of Life, Ewals FV, Female, Healthcare Professional, Humans, Infant, Infant Newborn, Intellectual Disability, Male, Middle Aged, Neurologists, Palliative Care, Parents, Pediatricians, Professional-family Relations, Qualitative Research, Research in Developmental Disabilities, Resuscitation Orders, Retrospective Studies, September 2016 List, Severity Of Illness Index, Shared Decision-making, Terminal Care, van Goudoever JB, Willems DL, Young Adult, Zaal-Schuller IH