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https://www.readbyqxmd.com/read/27905923/navigating-the-journey-of-aboriginal-childhood-disability-a-qualitative-study-of-carers-interface-with-services
#1
Anna Green, Penelope Abbott, Patricia Delaney, Patrick Patradoon-Ho, John Delaney, Patricia Mary Davidson, Michelle DiGiacomo
BACKGROUND: The disadvantage experienced by Aboriginal and Torres Strait Islander children with a disability is well recognized. The long term consequences of failing to address disability on health, education and employment underlies the importance of early intervention. Caregivers experience a disproportionate burden and have challenges accessing services. The aim of this study was to describe the carer journey of accessing support and services. METHODS: We conducted in-depth semi-structured interviews with nineteen parents and carers of Aboriginal children aged 0-8 years...
December 1, 2016: BMC Health Services Research
https://www.readbyqxmd.com/read/27899087/paradoxical-physiological-responses-to-propranolol-in-a-rett-syndrome-patient-a-case-report
#2
P J Santosh, L Bell, K Lievesley, J Singh, F Fiori
BACKGROUND: Rett Syndrome (RTT), caused by a loss-of-function in the epigenetic modulator: X-linked methyl-CpG binding protein 2 (MeCP2), is a pervasive neurological disorder characterized by compromised brain functions, anxiety, severe mental retardation, language and learning disabilities, repetitive stereotyped hand movements and developmental regression. An imbalance in the sympathetic and the parasympathetic nervous system (dysautonomia) and the resulting autonomic storms is a frequent occurrence in patients with RTT...
November 29, 2016: BMC Pediatrics
https://www.readbyqxmd.com/read/27892753/severe-hip-displacement-reduces-health-related-quality-of-life-in-children-with-cerebral-palsy
#3
Kjersti Ramstad, Reidun B Jahnsen, Terje Terjesen
Background and purpose - Hip displacement is common in children with severe cerebral palsy (CP) and can cause problems such as pain, contractures, and nursing difficulties. Caregiver priorities and child health index of life with disabilities (CPCHILD) is a recently developed measure of health-related quality of life (HRQL) in children with severe CP. The associations between CPCHILD scores and hip displacement have not been investigated. We explored the effect of hip displacement on HRQL. Patients and methods - 67 children were recruited from the population-based Norwegian CP register...
November 28, 2016: Acta Orthopaedica
https://www.readbyqxmd.com/read/27891762/judicial-reliance-on-parental-iq-in-appellate-level-child-welfare-cases-involving-parents-with-intellectual-and-developmental-disabilities
#4
Ella Callow, Munazza Tahir, Maurice Feldman
BACKGROUND: Parents with intellectual and developmental disabilities (IDDs) are over-represented in child welfare cases. Although IQ per se is an invalid indicator of parenting abilities, this study examined the prevalence of judicial consideration of parental IQ test evidence in US appellate cases. METHODS: The present authors conducted Boolean searches of Westlaw Corporation's case database since 1999. The present authors used a six-question checklist to survey the 42 most recent American appellate cases involving termination of parental rights (TPR) decisions that included evidence of parental intellectual and developmental disabilities based on IQ...
November 27, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/27891590/bi-allelic-iars-mutations-in-a-child-with-intra-uterine-growth-retardation-neonatal-cholestasis-and-mild-developmental-delay
#5
Naama Orenstein, Karin Weiss, Stephanie N Oprescu, Rivka Shapira, Dvora Kidron, Lina Vanagaite-Basel, Anthony Antonellis, Maximilian Muenke
Recently, bi-allelic mutations in cytosolic isoleucyl-tRNA synthetase (IARS) have been described in three individuals with growth delay, hepatic dysfunction, and neurodevelopmental disabilities. Here we report an additional subject with this condition identified by whole-exome sequencing. Our findings support the association between this disorder and neonatal cholestasis with distinct liver pathology. Furthermore, we provide functional data on two novel missense substitutions and expand the phenotype to include mild developmental delay, skin hyper-elasticity, and hypervitaminosis D...
November 28, 2016: Clinical Genetics
https://www.readbyqxmd.com/read/27891110/-my-child-has-cerebral-palsy-parental-involvement-and-children-s-school-engagement
#6
Armanda Pereira, Tânia Moreira, Sílvia Lopes, Ana R Nunes, Paula Magalhães, Sonia Fuentes, Natalia Reoyo, José C Núñez, Pedro Rosário
Engaged students tend to show school-committed behaviors (e.g., attend classes, get involved with the learning process), high achievement, and sense of belonging. However, students with disabilities are prone to show a lack of engagement with school due to the specific difficulties they have to handle. In fact, children with disabilities are likely to show poor participation in school when compared with children without disabilities. This poor involvement is related to their low autonomy to participate in the school activities, which, in turn, results in low school engagement...
2016: Frontiers in Psychology
https://www.readbyqxmd.com/read/27890788/genetic-testing-among-spanish-pediatric-neurologists-knowledge-attitudes-and-practices
#7
J Domínguez-Carral, F J López-Pisón, A Macaya, M Bueno Campaña, M A García-Pérez, D Natera-de Benito
Advances in genetic testing applied to child neurology have enabled the development of genetic tests with greater sensitivity in elucidating an etiologic diagnosis for common neurological conditions. The objective of the current study was to examine child neurologists' perspectives and insights into genetic testing. We surveyed 118 Spanish child neurologists, exploring their knowledge, attitudes, and practices concerning genetic tests. All of them had requested at least one genetic test in the past six months...
November 24, 2016: European Journal of Medical Genetics
https://www.readbyqxmd.com/read/27889381/do-developmental-milestones-at-4-8-12-and-24-months-predict-iq-at-5-6-years-old-results-of-the-eden-mother-child-cohort
#8
Hugo Peyre, Marie-Laure Charkaluk, Anne Forhan, Barbara Heude, Franck Ramus
RATIONALE: The present study aims: (i) to determine how well developmental milestones at 4, 8, 12 and 24 months may predict IQ at 5-6 years old, (ii) to identify cognitive domains during the first two years that best predict later IQ and (iii) to determine whether children with IQ in the normal range at 5-6 years old may differ from disabled (IQ < 70) and gifted children (IQ > 130) with regard to their early cognitive development. METHOD: The main developmental milestones were collected through self-administered questionnaires rated by parents at 4, 8, 12 and 24 months and through parental questionnaires administered by a trained interviewer and questionnaires completed following a medical examination at 12 months...
November 15, 2016: European Journal of Paediatric Neurology: EJPN
https://www.readbyqxmd.com/read/27886104/prevalence-and-parental-risk-factors-for-speech-disability-associated-with-cleft-palate-in-chinese-children-a-national-survey
#9
Chunfeng Yun, Zhenjie Wang, Ping He, Chao Guo, Gong Chen, Xiaoying Zheng
Although the prevalence of oral clefts in China is among the highest worldwide, little is known about the prevalence of speech disability associated with cleft palate in Chinese children. The data for this study were collected from the Second China National Sample Survey on Disability, and identification of speech disability associated with cleft palate was based on consensus manuals. Logistic regression was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs). A weighted number of 112,070 disabled children affected by cleft palate were identified, yielding a prevalence of 3...
November 23, 2016: International Journal of Environmental Research and Public Health
https://www.readbyqxmd.com/read/27885973/leprosy-trends-at-a-tertiary-care-hospital-in-mumbai-india-from-2008-to-2015
#10
Thirumugam Muthuvel, Petros Isaakidis, Hemant Deepak Shewade, Lucy Kattuppara, Rajbir Singh, Srinivas Govindarajulu
BACKGROUND: Leprosy remains an important cause of preventable disabilities. After the advent of multidrug therapy, new leprosy cases have come down dramatically. Despite this achievement, India, which contributes 60% of the global leprosy burden, faces some challenges to eliminate the disease, including active transmission in the community and delayed diagnosis of leprosy patients. OBJECTIVES: The objectives of the study were 1) to determine sociodemographic and clinical characteristics of newly diagnosed adults and children (less than 15 years) with leprosy and their trends over time (2008-2015) and 2) to describe the profile of surgical procedures among leprosy patients registered for reconstructive surgeries during 2006-2015...
2016: Global Health Action
https://www.readbyqxmd.com/read/27885286/immediate-outcome-of-hypoxic-ischaemic-encephalopathy-in-hypoxiate-newborns-in-nepal-medical-college
#11
S Shrestha, G S Shrestha, A Sharma
BACKGROUND: Birth asphyxia is the fifth major cause of under-five child deaths after pneumonia, diarrhoea, neonatal infections and complications of preterm birth. It is one of the important causes of neonatal mortality and morbidity accounting up to 30% of neonatal death in Nepal. It is also an important cause of long-term neurological disability and impairment. The mortality rate due to birth asphyxia is considered a good guide to the quality of perinatal care. This study was conducted to assess the rate of birth asphyxia, risk factors and outcome of the babies who were asphyxiated at birth...
May 2016: Journal of Nepal Health Research Council
https://www.readbyqxmd.com/read/27878951/alleviating-parenting-stress-in-parents-with-intellectual-disabilities-a-randomized-controlled-trial-of-a-video-feedback-intervention-to-promote-positive-parenting
#12
Marja W Hodes, Marieke Meppelder, Marleen de Moor, Sabina Kef, Carlo Schuengel
BACKGROUND: Adapted parenting support may alleviate the high levels of parenting stress experienced by many parents with intellectual disabilities. METHODS: Parents with mild intellectual disabilities or borderline intellectual functioning were randomized to experimental (n = 43) and control (n = 42) conditions. Parents in both groups received care-as-usual. The experimental group also received an adapted version of video-feedback intervention for positive parenting and learning difficulties (VIPP-LD)...
November 23, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/27878930/good-enough-support-exploring-the-attitudes-knowledge-and-experiences-of-practitioners-in-social-services-and-child-welfare-working-with-mothers-with-intellectual-disability
#13
Iva Strnadová, Jana Bernoldová, Zdeňka Adamčíková, Jan Klusáček
BACKGROUND: This study examined the attitudes, knowledge and experiences of practitioners in social services and child welfare working with mothers with intellectual disability. METHOD: The authors used a national survey, which was completed by 329 participants. Descriptive statistics and frequency tables were generated, and the associations between variables and differences between various subgroups of the sample were made. The open questions were analysed using the processes involved in content analysis...
November 23, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/27878920/-framed-terminating-the-parenting-rights-of-parents-with-intellectual-disability-in-iceland
#14
Hanna Björg Sigurjónsdóttir, James Gordon Rice
BACKGROUND: The aim was to investigate the role of measured intellectual function in framing parents as 'unfit' in child custody deprivation cases. METHOD: Grounded theory was used to analyse a national sample of custody deprivation cases in Iceland 2002-2014. RESULTS: The terminology used to evaluate and describe the intellectual and developmental status of parents in child deprivation custody cases served as a device to define and shape the 'unfit parent'...
November 23, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/27878912/maternal-sensitivity-in-mothers-with-mild-intellectual-disabilities-is-related-to-experiences-of-maltreatment-and-predictive-of-child-attachment-a-matched-comparison-study
#15
Lene Lindberg, Mari Fransson, Tommie Forslund, Lydia Springer, Pehr Granqvist
BACKGROUND: Scientific knowledge on the quality of caregiving/maternal sensitivity among mothers with mild intellectual disabilities (ID) is limited and subject to many methodological shortcomings, but seems to suggest that these mothers are less sensitive than mothers without intellectual disabilities. METHODS: In this matched-comparison study (N = 48), the present authors observed maternal sensitivity for 20 min in four different laboratory play situations...
November 23, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/27878908/parents-with-intellectual-disabilities-experiencing-challenging-child-routines-a-pilot-study-using-embedded-self-determination-practices
#16
Christen Knowles, Allison Blakely, Sarah Hansen, Wendy Machalicek
BACKGROUND: Practices to facilitate self-determination have not received appropriate attention in research concerning parents with intellectual disabilities (ID). Likewise, parenting interventions for adults with intellectual disabilities have seldom observed both parent and child behavioural outcomes. METHODS: This study evaluated the effectiveness of a parenting intervention embedded with self-determination facilitation practices for two dyads of a parent with intellectual disabilities and their young child...
November 23, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/27878604/-paediatric-palliative-care-ppc-a-particular-challenge-tasks-aims-and-specifics
#17
Boris Zernikow, Barbara Gertz, Carola Hasan
In Germany, there are about 50,000 children, adolescents and young adults with life threatening or life limiting conditions, who will likely die due to their illness before reaching the age of 40. In recent years prevalence has increased significantly.The aim of paediatric palliative care (PPC) is to optimize quality of life for the child, adolescent or young adult and its whole family. Whenever possible the patient should be treated at home.The very complex and rare diseases as well as the patients' wide range of age and developmental stage are particularly challenging within PPC...
November 23, 2016: Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
https://www.readbyqxmd.com/read/27876288/trends-prospects-and-deprivation-index-of-disability-in-india-evidences-from-census-2001-and-2011
#18
Ashish Awasthi, C M Pandey, Manisha Dubey, Sanjay Rastogi
BACKGROUND: Since the dawn of civilization, disabilities have existed in various dimensions of human life. World Health Organization (WHO) defines disability as an umbrella term, covering impairments, activity limitations, and participation restrictions. Globally, approximately 1 billion people have some form of disability, and approximately 20% have significant functioning impairments. OBJECTIVE: This study aims to estimate the level, trends and prospects of disability in 640 districts of India...
November 12, 2016: Disability and Health Journal
https://www.readbyqxmd.com/read/27875781/long-term-pediatrician-outcomes-of-a-parent-led-curriculum-in-developmental-disabilities
#19
Bruce L Keisling, Elizabeth A Bishop, David A Kube, Jenness M Roth, Frederick B Palmer
: Previous research has demonstrated high satisfaction and perceived relevance of Project DOCC (Delivery of Chronic Care), a parent led curriculum in developmental disabilities, across a sample of medical residents. AIMS: The influence of such a training program on the clinical practices and professional activities of these residents once they are established in their careers as physicians, however, has not been studied; this was the aim of the present study. METHODS: An anonymous follow-up survey was designed and disseminated to physicians who participated in Project DOCC during their one-month developmental disabilities rotation as part of their pediatrics or medicine/pediatric residency between 2002 and 2010...
November 19, 2016: Research in Developmental Disabilities
https://www.readbyqxmd.com/read/27875504/screening-for-psychosocial-and-family-risk-in-pediatric-gastrointestinal-disorders
#20
Carin Cunningham, Elise Cho, Michele L Shaffer, Miranda C Bradford, Tonya Palermo
OBJECTIVES: Screening for psychosocial comorbidity is recommended for pediatric patients presenting at an initial gastroenterology (GI) outpatient consultation. We developed and evaluated the psychometric properties of the GI Screener to address the need for a screening tool specific to pediatric GI patients. METHODS: 128 patients (8-18 years old, 63% female) and 126 parents completed age-specific versions of the GI Screener and 3 validated psychosocial comparison instruments (The Behavioral Assessment System for Children, The Functional Disability Inventory, The General Functioning scale of the Family Assessment Device) at their initial GI consultation...
December 2016: Journal of Pediatric Gastroenterology and Nutrition
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