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https://www.readbyqxmd.com/read/28639491/family-centred-services-for-young-children-with-intellectual-disabilities-and-their-families-theory-policy-and-practice
#1
Jóna G Ingólfsdóttir, Snæfrídur Thóra Egilson, Rannveig Traustadóttir
This paper outlines the reported discrepancies between the aims of the welfare services in Iceland and the experiences of parents raising young children with intellectual disabilities. Prevailing views on disability and service delivery were also considered. A multi case study design was employed to reflect the situation in different parts of the country. Families of eight children with intellectual disabilities and professionals in three different municipalities formed the cases. The findings reveal a high convergence between the three cases with variations based on individual experiences rather than geographical location...
January 1, 2017: Journal of Intellectual Disabilities: JOID
https://www.readbyqxmd.com/read/28638969/introduction-childhood-and-disability
#2
EDITORIAL
Erica K Salter
From growth attenuation therapy for severely developmentally disabled children to the post-natal management of infants with trisomy 13 and 18, pediatric treatment decisions regularly involve assessments of the probability and severity of a child's disability. Because these decisions are almost always made by surrogate decision-makers (parents and caregivers) and because these decision-makers must often make decisions based on both prognostic guesses and potentially biased quality of life judgments, they are among the most ethically complex in pediatric care...
June 21, 2017: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/28636649/factors-associated-with-successful-transition-among-children-with-disabilities-in-eight-european-countries
#3
John Ravenscroft, Kerri Wazny, John M Davis
INTRODUCTION: This research paper aims to assess factors reported by parents associated with the successful transition of children with complex additional support requirements that have undergone a transition between school environments from 8 European Union member states. METHODS: Quantitative data were collected from 306 parents within education systems from 8 EU member states (Bulgaria, Cyprus, Greece, Ireland, the Netherlands, Romania, Spain and the UK). The data were derived from an online questionnaire and consisted of 41 questions...
2017: PloS One
https://www.readbyqxmd.com/read/28630118/childhood-firearm-injuries-in-the-united-states
#4
Katherine A Fowler, Linda L Dahlberg, Tadesse Haileyesus, Carmen Gutierrez, Sarah Bacon
OBJECTIVES: Examine fatal and nonfatal firearm injuries among children aged 0 to 17 in the United States, including intent, demographic characteristics, trends, state-level patterns, and circumstances. METHODS: Fatal injuries were examined by using data from the National Vital Statistics System and nonfatal injuries by using data from the National Electronic Injury Surveillance System. Trends from 2002 to 2014 were tested using joinpoint regression analyses. Incident characteristics and circumstances were examined by using data from the National Violent Death Reporting System...
June 19, 2017: Pediatrics
https://www.readbyqxmd.com/read/28624289/the-effect-of-child-family-and-environmental-factors-on-the-participation-of-young-children-with-disabilities
#5
Erica Di Marino, Stephanie Tremblay, Mary Khetani, Dana Anaby
BACKGROUND: While participation is essential to a child's health and well-being, little is known about participation patterns of young children with disabilities. OBJECTIVE: This study described the participation of children with disabilities under age 6, and examined the extent to which the child's factors (i.e., age, complexity of child's condition), family factors (i.e., general family functioning, income) and environmental factors (i.e., environmental helpfulness) affect participation dimensions (frequency, involvement, desire for change) in three different settings: home, daycare/preschool and community...
June 1, 2017: Disability and Health Journal
https://www.readbyqxmd.com/read/28608774/parent-perspectives-of-applying-mindfulness-based-stress-reduction-strategies-to-special-education
#6
Meghan M Burke, Neilson Chan, Cameron L Neece
Parents of children with (versus without) intellectual and developmental disabilities report greater stress; such stress may be exacerbated by dissatisfaction with school services, poor parent-school partnerships, and the need for parent advocacy. Increasingly, mindfulness interventions have been used to reduce parent stress. However, it is unclear whether parents apply mindfulness strategies during the special education process to reduce school-related stress. To investigate whether mindfulness may reduce school-related stress, interviews were conducted with 26 parents of children with intellectual and developmental disabilities who completed a mindfulness-based stress reduction intervention...
June 2017: Intellectual and Developmental Disabilities
https://www.readbyqxmd.com/read/28604208/-advocate-for-your-patients-and-do-your-best
#7
(no author information available yet)
Why did you become a nurse? I am a learning disability nurse who has spent a large part of my career working with children who have a learning disability and their families in the community. My experiences in supporting children have enabled me to consider their holistic needs across all areas of service and community provision.
June 12, 2017: Nursing Children and Young People
https://www.readbyqxmd.com/read/28600490/treating-tobacco-dependence-guidance-for-primary-care-on-life-saving-interventions-position-statement-of-the-ipcrg
#8
O C P Van Schayck, S Williams, V Barchilon, N Baxter, M Jawad, P A Katsaounou, B J Kirenga, C Panaitescu, K W I G Tsiligianni, N Zwar, A Ostrem
Tobacco smoking is the world's leading cause of premature death and disability. Global targets to reduce premature deaths by 25% by 2025 will require a substantial increase in the number of smokers making a quit attempt, and a significant improvement in the success rates of those attempts in low, middle and high income countries. In many countries the only place where the majority of smokers can access support to quit is primary care. There is strong evidence of cost-effective interventions in primary care yet many opportunities to put these into practice are missed...
June 9, 2017: NPJ Primary Care Respiratory Medicine
https://www.readbyqxmd.com/read/28583778/-physiopathology-and-management-of-cholestatic-pruritus-in-children
#9
A Thébaut, D Debray, E Gonzales
Pruritus is a disabling symptom accompanying chronic cholestasis. In some cases, refractory pruritus may require invasive therapies including liver transplantation. The pathogenesis of pruritus in cholestatic disease is poorly understood. It may involve a specific neural pathway and several pruritogenic substances such as bile acids, opioids, serotonin, and the more recently identified lysophosphatidic acid. While the therapeutic management of cholestatic pruritus is well established in adult patients, there is no consensus in children, given the difficulty in conducting controlled clinical studies...
June 2, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28582882/pediatric-feeding-and-swallowing-rehabilitation-an-overview
#10
Lenie van den Engel-Hoek, Celia Harding, Marjo van Gerven, Helen Cockerill
Children with neurological disabilities frequently have problems with feeding and swallowing. Such problems have a significant impact on the health and well-being of these children and their families. The primary aims in the rehabilitation of pediatric feeding and swallowing disorders are focused on supporting growth, nutrition and hydration, the development of feeding activities, and ensuring safe swallowing with the aim of preventing choking and aspiration pneumonia. Pediatric feeding and swallowing disorders can be divided into four groups: transient, developmental, chronic or progressive...
May 16, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/28580165/managing-challenging-behaviour-in-preschool-children-post-traumatic-brain-injury-with-online-clinician-support-protocol-for-a-pilot-study
#11
Kaitlyn Taylor, Cathy Catroppa, Celia Godfrey, Audrey McKinlay, Jennie Ponsford, Jan Matthews, Vicki Anderson
BACKGROUND: Traumatic brain injury (TBI) in children is associated with a range of poor long-term outcomes, including behavioural disturbances. Parents can experience high levels of stress and injury-related burden, and evidence suggests that distressed parents are less likely to adopt positive parenting styles to manage their child's behaviour. The 'Signposts for Building Better Behaviour' program is a parenting programme that was originally developed to assist parents of children with an intellectual disability in managing their child's behaviour...
2017: Pilot and Feasibility Studies
https://www.readbyqxmd.com/read/28577608/intellectual-disability-and-language-disorder
#12
REVIEW
Natasha Marrus, Lacey Hall
Intellectual disability (ID) and language disorders are neurodevelopmental conditions arising in early childhood. Child psychiatrists are likely to encounter children with ID and language disorders because both are strongly associated with challenging behaviors and mental disorder. Because early intervention is associated with optimal outcomes, child psychiatrists must be aware of their signs and symptoms, particularly as related to delays in cognitive and adaptive function. Optimal management of both ID and language disorders requires a multidisciplinary, team-based, and family centered approach...
July 2017: Child and Adolescent Psychiatric Clinics of North America
https://www.readbyqxmd.com/read/28572606/automated-screening-for-fragile-x-premutation-carriers-based-on-linguistic-and-cognitive-computational-phenotypes
#13
Arezoo Movaghar, Marsha Mailick, Audra Sterling, Jan Greenberg, Krishanu Saha
Millions of people globally are at high risk for neurodegenerative disorders, infertility or having children with a disability as a result of the Fragile X (FX) premutation, a genetic abnormality in FMR1 that is underdiagnosed. Despite the high prevalence of the FX premutation and its effect on public health and family planning, most FX premutation carriers are unaware of their condition. Since genetic testing for the premutation is resource intensive, it is not practical to screen individuals for FX premutation status using genetic testing...
June 1, 2017: Scientific Reports
https://www.readbyqxmd.com/read/28562298/shared-decision-making-and-children-with-disabilities-pathways-to-consensus
#14
Richard C Adams, Susan E Levy
Shared decision-making (SDM) promotes family and clinician collaboration, with ultimate goals of improved health and satisfaction. This clinical report provides a basis for a systematic approach to the implementation of SDM by clinicians for children with disabilities. Often in the discussion of treatment plans, there are gaps between the child's/family's values, priorities, and understanding of perceived "best choices" and those of the clinician. When conducted well, SDM affords an appropriate balance incorporating voices of all stakeholders, ultimately supporting both the child/family and clinician...
May 29, 2017: Pediatrics
https://www.readbyqxmd.com/read/28557625/a-home-based-body-weight-supported-treadmill-training-program-for-children-with-cerebral-palsy-a-case-series
#15
Lisa K Kenyon, Marci Westman, Ashley Hefferan, Peter McCrary, Barbara J Baker
BACKGROUND AND PURPOSE: Contemporary approaches to the treatment of cerebral palsy (CP) advocate a task-specific approach that emphasizes repetition and practice of specific tasks. Recent studies suggest that body-weight-supported treadmill training (BWSTT) programs may be beneficial in clinical settings. The purposes of this case series were to explore the outcomes and feasibility of a home-based BWSTT program for three children with CP. CASE DESCRIPTION: Three children with CP at Gross Motor Function Classification System (GMFCS) Levels III or IV participated in this case series...
July 2017: Physiotherapy Theory and Practice
https://www.readbyqxmd.com/read/28554332/genomic-diagnosis-for-children-with-intellectual-disability-and-or-developmental-delay
#16
Kevin M Bowling, Michelle L Thompson, Michelle D Amaral, Candice R Finnila, Susan M Hiatt, Krysta L Engel, J Nicholas Cochran, Kyle B Brothers, Kelly M East, David E Gray, Whitley V Kelley, Neil E Lamb, Edward J Lose, Carla A Rich, Shirley Simmons, Jana S Whittle, Benjamin T Weaver, Amy S Nesmith, Richard M Myers, Gregory S Barsh, E Martina Bebin, Gregory M Cooper
BACKGROUND: Developmental disabilities have diverse genetic causes that must be identified to facilitate precise diagnoses. We describe genomic data from 371 affected individuals, 309 of which were sequenced as proband-parent trios. METHODS: Whole-exome sequences (WES) were generated for 365 individuals (127 affected) and whole-genome sequences (WGS) were generated for 612 individuals (244 affected). RESULTS: Pathogenic or likely pathogenic variants were found in 100 individuals (27%), with variants of uncertain significance in an additional 42 (11...
May 30, 2017: Genome Medicine
https://www.readbyqxmd.com/read/28544451/protection-and-restriction-a-mixed-methods-study-of-self-reported-well-being-among-youth-with-intellectual-disabilities
#17
Petra Boström, Malin Broberg
BACKGROUND: As most mental health studies of school-aged children with intellectual and developmental disabilities (IDD) are based on proxy ratings, the subjective views of these young persons are rarely explored. The present study explores experiences of well-being, mental ill-health, family, school, and peer relations in students in special education. METHODS: Ten students in special education, aged 13-16 years, answered the Wellbeing in Special Education Questionnaire (WellSEQ) and participated in semi-structured interviews...
May 19, 2017: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/28541526/maladaptive-coping-and-depressive-symptoms-partially-explain-the-association-between-family-stress-and-pain-related-distress-in-youth-with-ibd
#18
Bonney Reed-Knight, Miranda A L van Tilburg, Rona L Levy, Shelby L Langer, Joan M Romano, Tasha B Murphy, Melissa M DuPen, Andrew D Feld
To extend existing research on the pain burden experienced by youth with inflammatory bowel disease (IBD) by examining the complexity of psychosocial factors involved in pain-related distress. Parents completed measures of family stress and their child's pain-related expressions of distress and coping. Youth with IBD rated their depressive symptoms ( n  = 183 dyads). Mediation analyses were performed using regression-based techniques and bootstrapping. Greater family stress was positively related to children's pain-related expressions of distress and passive coping...
May 24, 2017: Journal of Pediatric Psychology
https://www.readbyqxmd.com/read/28538828/families-perception-of-children-adolescents-with-language-impairment-through-the-international-classification-of-functioning-disability-and-health-icf-cy
#19
Daniele Theodoro Ostroschi, Maria de Lurdes Zanolli, Regina Yu Shon Chun
Purpose: To investigate the perception of family members regarding linguistic conditions and social participation of children and adolescents with speech and language impairments using the International Classification of Functioning, Disability and Health - Children and Youth Version (ICF-CY). Methods: Quali-quantitative approach research, in which a survey of medical records of 24 children/adolescents undergoing speech-language therapy and interviews with their family members was conducted...
May 22, 2017: CoDAS
https://www.readbyqxmd.com/read/28538643/immature-patients-in-a-mature-system-regional-analysis-of-florida-s-pediatric-trauma-system
#20
Christopher W Snyder, Nicole M Chandler, Cristen N Litz, Etienne E Pracht, Paul D Danielson, David J Ciesla
BACKGROUND: The state of Florida's trauma system is organized into seven regions, two of which lack designated pediatric trauma centers. Injured children residing in these regions often require transfer out of their home region for definitive care. The purpose of this study was to evaluate the effectiveness and efficiency of the current regionalization approach, focusing on variations between regions. METHODS: Using the Florida Agency for Health Care Administration database, we identified all trauma patients 15 years old or younger admitted between 2009 and 2014...
May 22, 2017: Journal of Trauma and Acute Care Surgery
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