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https://www.readbyqxmd.com/read/29667920/child-life-services-in-an-epilepsy-monitoring-unit
#1
Daniel B Lowenstein, Mackenzie C Cervenka, Lauren Mitchell, Noelle Stewart, Eric H Kossoff, Sarah A Kelley
The goal of this study was to determine the value of a certified child life specialist (CCLS) on the patient and staff experiences in an epilepsy monitoring unit (EMU). We integrated a CCLS into the EMU for all children as well as adults with intellectual disability. We surveyed families to determine the impact of child life services on their stay. EMU staff completed questionnaires to determine perceived impact to their job performance from the integration of the CCLS. All of the families (pediatric and adult patients) who responded to the survey reported the presence of the CCLS improved their hospital experience...
April 1, 2018: Clinical Pediatrics
https://www.readbyqxmd.com/read/29667699/lean-perspectives-a-case-for-implementing-parent-child-relational-problem-screening
#2
Bryson C Okeoma
The purpose of the current study was to make a case for instituting parent-child relational problem (PCRP) screening as a standard of care in pediatric inpatient psychiatric units due to increasing evidence that PCRP may be an underreported problem that affects more adolescents than currently realized. Adolescents who are admitted to the hospital for mood exacerbation, suicidal ideation, self-harm behavior, or behavioral escalation may improve and be discharged. However, these adolescents often are readmitted, which may be associated with parent-child relational factors...
April 17, 2018: Journal of Psychosocial Nursing and Mental Health Services
https://www.readbyqxmd.com/read/29666778/psychiatric-morbidity-perceived-stress-and-ways-of-coping-among-parents-of-children-with-intellectual-disability-in-lahore-pakistan
#3
Muhammad H Sheikh, Sania Ashraf, Nazish Imran, Sadia Hussain, Muhammad W Azeem
Background This study assessed anxiety and depression levels among parents of children with intellectual disability (ID) and analyzed their coping strategies. Methods One hundred parents of children with ID were recruited through child psychiatry outpatient services in a tertiary care setting in Lahore, Pakistan. A structured questionnaire including sociodemographic details, the Agha Khan University Anxiety Depression Scale, the Family Stress and Coping Questionnaire, Brief COPE questionnaire, and Support questionnaire were used for data collection...
February 16, 2018: Curēus
https://www.readbyqxmd.com/read/29664972/the-impact-of-social-and-psychological-consequences-of-disease-on-judgments-of-disease-severity-an-experimental-study
#4
Nicholas B King, Sam Harper, Meredith Young, Sarah C Berry, Kristin Voigt
BACKGROUND: The Global Burden of Disease (GBD) project systematically assesses mortality, healthy life expectancy, and disability across 195 countries and territories, using the disability-adjusted life year (DALY). Disability weights in the DALY are based upon surveys that ask users to rate health states based on lay descriptions. We conducted an experimental study to examine whether the inclusion or removal of psychological, social, or familial implications from a health state description might affect individual judgments about disease severity, and thus relative disability weights...
2018: PloS One
https://www.readbyqxmd.com/read/29664768/determinants-of-parent-satisfaction-with-emergency-or-urgent-care-when-the-patient-has-autism
#5
Sarah F Kirsch, David L Meryash, Bárbara González-Arévalo
OBJECTIVE: The purpose of this study was to identify factors that predict parent satisfaction (PS) with their child with autism spectrum disorder (ASD)'s visit to a hospital emergency department (ED) or urgent care (UC) center. METHODS: Parents recruited through a national database whose child (3-21 years; N = 378) with ASD had been treated in an ED/UC center within the previous 3 years completed an anonymous on-line questionnaire. They answered questions about whether they were satisfied overall with the visit and the care provided, their demographics, patient characteristics, their expectations and preparation for the visit, and the ED/UC center experience itself, including their observations of staff interpersonal and communication skills (ICSs) and behaviors, and whether the patient was disruptive (D)...
April 16, 2018: Journal of Developmental and Behavioral Pediatrics: JDBP
https://www.readbyqxmd.com/read/29662458/inhibition-updating-working-memory-and-shifting-predict-reading-disability-symptoms-in-a-hybrid-model-project-kids
#6
Mia C Daucourt, Christopher Schatschneider, Carol M Connor, Stephanie Al Otaiba, Sara A Hart
Recent achievement research suggests that executive function (EF), a set of regulatory processes that control both thought and action necessary for goal-directed behavior, is related to typical and atypical reading performance. This project examines the relation of EF, as measured by its components, Inhibition, Updating Working Memory, and Shifting, with a hybrid model of reading disability (RD). Our sample included 420 children who participated in a broader intervention project when they were in KG-third grade (age M = 6...
2018: Frontiers in Psychology
https://www.readbyqxmd.com/read/29660961/an-international-perspective-on-educators-perceptions-of-children-with-traumatic-brain-injury
#7
Laurie Gutmann Kahn, Mark A Linden, Audrey McKinlay, Doug Gomez, Ann Glang
BACKGROUND: Educators lack understanding of traumatic brain injury (TBI), which can lead to a lack of appropriate assessment and intervention methods for these students. OBJECTIVE(S): This qualitative study explored what experienced teachers perceive, believe, and know about pediatric TBI. METHODS: Following development of a standardized interview protocol, 46 teachers from Australia, New Zealand, Northern Ireland, and the United States took part in semi-structured interviews...
April 7, 2018: NeuroRehabilitation
https://www.readbyqxmd.com/read/29651830/qualitative-and-quantitative-revaluation-of-specific-learning-disabilities-a-multicentric-study
#8
Francesca F Operto, Roberta Mazza, Maura Buttiglione, Francesco Craig, Alessandro Frolli, Simone Pisano, Lucia Margari, Giangennaro Coppola
BACKGROUND: Specific learning disabilities are disorders that affect the instrumental skills of academic learning, leaving intact the general intellectual functioning. It is possible to distinguish: dyslexia, dysorthography, dysgraphia, and dyscalculia. The diagnosis is made according to DSMV. The aim of this study is to evaluate the implementation of Law N° 170 following a diagnosis of specific learning disabilities in children and their evolution over time. METHODS: The sample under examination consists of 75 children, 56 males and 18 females aged 7,8 to 16 years, with a diagnosis of specific learning disabilities; a revaluation was carried outthrough the use of standardized instruments according to age and school attended...
April 12, 2018: Minerva Pediatrica
https://www.readbyqxmd.com/read/29650748/exploring-the-prenatal-experience-of-women-with-intellectual-and-developmental-disabilities-in-a-southeastern-ontario-family-health-team
#9
Elaine Xie, Meg Gemmill
OBJECTIVE: To identify psychosocial challenges facing pregnant women with intellectual and developmental disabilities (IDD) using retrospective, routinely collected electronic medical record data. DESIGN: A retrospective qualitative study using narratives and supporting documents found in the electronic medical record of an academic family health team (FHT). SETTING: Academic FHT in southeastern Ontario. PARTICIPANTS: A sample of 10 women with a diagnosis of IDD, rostered to physicians at the academic FHT, who delivered a child between January 2010 and June 2015 (14 pregnancies)...
April 2018: Canadian Family Physician Médecin de Famille Canadien
https://www.readbyqxmd.com/read/29649939/participation-patterns-of-preschool-children-with-intellectual-developmental-disabilities
#10
Yafit Gilboa, Reut Fuchs
We aim to examine the pattern of participation of children with intellectual developmental disabilities (IDD) or global developmental delay (GDD) in comparison with typically developing preschoolers. In addition, to identify environmental and personal factors associated with their participation, 20 children with mild to moderate GDD or IDD, and 24 age- and gender-matched controls, aged 3 to 6 years, were assessed using the Assessment of Preschool Children's Participation and the Environmental Restriction Questionnaire...
April 1, 2018: OTJR: Occupation, Participation and Health
https://www.readbyqxmd.com/read/29648665/homozygous-taf8-mutation-in-a-patient-with-intellectual-disability-results-in-undetectable-taf8-protein-but-preserved-rna-polymerase-ii-transcription
#11
Farrah El-Saafin, Cynthia Curry, Tao Ye, Jean-Marie Garnier, Isabelle Kolb-Cheynel, Matthieu Stierle, Natalie L Downer, Mathew P Dixon, Luc Negroni, Imre Berger, Tim Thomas, Anne K Voss, William Dobyns, Didier Devys, Laszlo Tora
The human general transcription factor TFIID is composed of the TATA-binding protein (TBP) and 13 TBP-associated factors (TAFs). In eukaryotic cells, TFIID is thought to nucleate RNA polymerase II (Pol II) preinitiation complex formation on all protein coding gene promoters and thus, be crucial for Pol II transcription. In a child with intellectual disability, mild microcephaly, corpus callosum agenesis and poor growth we identified a homozygous splice-site mutation in TAF8 (NM_138572.2:c.781-1G>A). Our data indicate that the patient's mutation generates a frame shift and an unstable TAF8 mutant protein with an unrelated C-terminus...
April 10, 2018: Human Molecular Genetics
https://www.readbyqxmd.com/read/29648486/physicians-attitudes-when-faced-with-life-threatening-events-in-children-with-severe-neurological-disabilities
#12
Benjy Wosinski, Christopher J Newman
PURPOSE: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations. METHODS: We surveyed physicians in pediatric intensive care, neurology, and rehabilitation units in Swiss hospitals. The questionnaire explored participants' attitudes toward life-threatening situations in two scenarios: a child with profound intellectual and multiple disabilities (PIMD) and an infant with spinal muscular atrophy (SMA) type I...
April 12, 2018: Developmental Neurorehabilitation
https://www.readbyqxmd.com/read/29644191/current-situation-of-leprosy-in-india-and-its-future-implications
#13
REVIEW
P Narasimha Rao, Sujai Suneetha
The global leprosy situation has changed significantly over the last four decades after the introduction of multidrug therapy (MDT) in 1982 with a reduction in prevalence from over 5 million cases in the mid-1980s to less than 200,000 at the end of 2016. The programme in India also saw a reduction from a prevalence rate of 57.8/10,000 in 1983 to less than 1/10,000 by the end of 2005 when India declared to have reached the World Health Organization (WHO) target of elimination as a public health problem. Post 2005, major changes in the programme were made by the National leprosy eradication programme (NLEP) and the global leprosy programme, which may have affected the new case detection (NCD), disability, and child leprosy trends, which continue to show no appreciable regression...
March 2018: Indian Dermatology Online Journal
https://www.readbyqxmd.com/read/29628964/exploring-the-needs-of-family-caregivers-of-children-with-attention-deficit-hyperactivity-disorder-a-qualitative-study
#14
Saeid Pahlavanzadeh, Sharifeh Mousavi, Jahangir Maghsoudi
Background: Attention deficit hyperactivity disorder (ADHD) is one of the most common chronic childhood disorders that lead to dysfunction and disability in childhood and subsequently be careful. This study aimed to understand the needs of the children's caregivers in Iran. Materials and Methods: This qualitative research was conducted in 2016. Using purposive sampling, 27 participants from 20 families of children with ADHD were interviewed. Unstructured interviews were conducted within 6 months in Isfahan...
March 2018: Iranian Journal of Nursing and Midwifery Research
https://www.readbyqxmd.com/read/29617065/relationships-between-self-injurious-behaviors-pain-reactivity-and-%C3%AE-endorphin-in-children-and-adolescents-with-autism
#15
Sylvie Tordjman, George M Anderson, Annaëlle Charrier, Cécile Oriol, Solenn Kermarrec, Roberto Canitano, Michel Botbol, Nathalie Coulon, Corinne Antoine, Sylvie Brailly-Tabard, David Cohen, Hazar Haidar, Séverine Trabado, Michèle Carlier, Guillaume Bronsard, Laurent Mottron
OBJECTIVE: Autism and certain associated behaviors including self-injurious behaviors (SIB) and atypical pain reactivity have been hypothesized to result from excessive opioid activity. The objective of this study was to examine the relationships between SIB, pain reactivity, and β-endorphin levels in autism. METHODS: Study participants were recruited between 2007 and 2012 from day care centers and included 74 children and adolescents diagnosed with autism (according to DSM-IV-TR, ICD-10, and CFTMEA) and intellectual disability...
March 13, 2018: Journal of Clinical Psychiatry
https://www.readbyqxmd.com/read/29613924/assessing-the-risk-benefit-ratio-of-scoliosis-surgery-in-cerebral-palsy-surgery-is-worth-it
#16
Firoz Miyanji, Luigi A Nasto, Paul D Sponseller, Suken A Shah, Amer F Samdani, Baron Lonner, Burt Yaszay, David H Clements, Unni Narayanan, Peter O Newton
BACKGROUND: The true benefits of scoliosis surgery in cerebral palsy (CP) remain uncertain. Our aims were to determine the benefits of spinal fusion according to health-related quality of life (HRQoL) improvement at long-term follow-up and to explore the effect of surgery-related complications on clinical outcomes. METHODS: The cases of consecutive patients who had Gross Motor Function Classification System (GMFCS) level-IV or V cerebral palsy with 5-year follow-up from a prospective, longitudinal, multicenter database were analyzed...
April 4, 2018: Journal of Bone and Joint Surgery. American Volume
https://www.readbyqxmd.com/read/29610411/barriers-to-receipt-of-services-for-young-adults-with-autism
#17
Connie Anderson, Alexis Lupfer, Paul T Shattuck
OBJECTIVES: In this study, we examine experiences of families of young adults (YAs) on the autism spectrum to better understand dynamics leading to poor YA outcomes. METHODS: Twenty parents of YAs with autism spectrum disorder (ASD) who had completed high school in the past 15 years took part in a 90-minute interview. They described their YA's experiences at the transition from high school and current status with regards to services or postsecondary education. Qualitative interviews were digitally recorded, transcribed, and analyzed by using the constant comparative method associated with a grounded theory approach...
April 2018: Pediatrics
https://www.readbyqxmd.com/read/29610406/introduction-to-transitions-in-the-life-course-of-autism-and-other-developmental-disabilities
#18
Alice A Kuo, Kristy A Anderson, Tara Crapnell, Lynette Lau, Paul T Shattuck
The Health Care Transitions Research Network for Autism Spectrum Disorder and other Developmental Disabilities and the Life Course Research Network, both funded by the Maternal and Child Health Bureau, invited articles for this Supplement. Our goal in this Supplement is to highlight and explore developmental and transition-related challenges over the life course of individuals on the autism spectrum and other neurodevelopmental disabilities, discuss the clinical and practice implications of these issues, highlight gaps in knowledge, and identify directions for future research...
April 2018: Pediatrics
https://www.readbyqxmd.com/read/29607791/attention-deficit-hyperactivity-disorder-and-risk-for-psychiatric-and-neurodevelopmental-disorders-in-siblings
#19
Elina Jokiranta-Olkoniemi, Keely Cheslack-Postava, Petteri Joelsson, Auli Suominen, Alan S Brown, Andre Sourander
BACKGROUND: Probands with attention-deficit/hyperactivity disorder (ADHD) are at increased risk for several psychiatric and neurodevelopmental disorders. The risk of these disorders among the siblings of probands has not been thoroughly assessed in a population-based cohort. METHODS: Every child born in Finland in 1991-2005 and diagnosed with ADHD in 1995-2011 were identified from national registers. Each case was matched with four controls on sex, place, and date of birth...
April 2, 2018: Psychological Medicine
https://www.readbyqxmd.com/read/29603880/fmr1-premutation-frequency-in-a-large-ethnically-diverse-population-referred-for-carrier-testing
#20
Kailey M Owens, Lindsay Dohany, Carol Holland, Jeana DaRe, Tobias Mann, Christina Settler, Ryan E Longman
Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability and is caused by an expansion of cytosine-guanine-guanine (CGG) repeats in the FMR1 gene. Female premutation allele carriers (55-200 CGG repeats) are at risk to have an affected child. Currently, specific population-based carrier screening for FXS is not recommended. Previous studies exploring female premutation carrier frequency have been limited by size or ethnicity. This retrospective study provides a pan-ethnic estimate of the Fragile X premutation carrier frequency in a large, ethnically diverse population of women referred for routine carrier screening during a specified time period at Progenity, Inc...
March 31, 2018: American Journal of Medical Genetics. Part A
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