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family of children with disability

Iliana I Karipidis, Georgette Pleisch, Martina Röthlisberger, Christoph Hofstetter, Dario Dornbierer, Philipp Stämpfli, Silvia Brem
Learning letter-speech sound correspondences is a major step in reading acquisition and is severely impaired in children with dyslexia. Up to now, it remains largely unknown how quickly neural networks adopt specific functions during audiovisual integration of linguistic information when prereading children learn letter-speech sound correspondences. Here, we simulated the process of learning letter-speech sound correspondences in 20 prereading children (6.13-7.17 years) at varying risk for dyslexia by training artificial letter-speech sound correspondences within a single experimental session...
October 14, 2016: Human Brain Mapping
Linda S Beeber, Samantha Meltzer-Brody, Maria Martinez, Yui Matsuda, Anne C Wheeler, Marcia Mandel, Dore LaForett, Julee Waldrop
Objective A higher rate of depressive symptoms is found among mothers of children with disabilities compared to other parents. However, there is a lack of study of mothers with children <3 years of age participating in Early Intervention (EI) programs. This study aims to more fully describe the extent of mood disorders in these mothers including estimated prevalence, severity and factors associated with maternal mental health, using gold standard clinical diagnostic and symptom measures, and test models associating depressive symptoms with contextual factors and child behavior...
October 12, 2016: Maternal and Child Health Journal
Tamale Andrew, Ejobi Francis, Muyanja Charles, Naigaga Irene, Nakavuma Jesca, Micheal Ocaido, Kato Drago, Sente Celsus, Amulen Deborah, Wilson Rumbeiha
Exposure to mercury contaminated fish predisposes populations particularly children and pregnant women to various health hazards including neurotoxicity, reproductive abnormalities and cognitive disorders. Earlier studies in the Lake Albert community have demonstrated the presence of mercury in Nile tilapia and Nile perch. However, the risk estimates for vulnerable groups such as Children and pregnant women is not well documented. Secondary data-set from previous studies were employed comprising family household size and fish consumption history, fish consumption quantity and frequency and mercury levels in fish species in comparison with FAO/WHO guidelines...
December 31, 2016: Cogent Food Agric
Crista A Hopp, Ida Sue Baron
OBJECTIVE: Children delivered at the edge of viability are at greatest risk of medical and neuropsychological disability, their adverse outcomes overshadowing extremely preterm survivors with more optimal outcomes. We aimed to describe an exceptionally early-born extremely preterm (EEEP) preschooler whose neurobiological, familial, and socioeconomic factors likely influenced her unexpected cognitive resilience. METHOD: Baby G was a 3-years 10-months-old, English-speaking, Caucasian, singleton girl born weighing 435 g at 22(5/7) weeks' gestation to well-educated married parents...
October 5, 2016: Clinical Neuropsychologist
Songül Atasavun Uysal, Gül Baltaci
OBJECTIVE: This study aimed at assessing how the addition of Nintendo Wii(™) (NW) system to the traditional therapy influences occupational performance, balance, and daily living activities in children with spastic hemiplegic Cerebral Palsy (CP). MATERIALS AND METHODS: The present study is a single-blind and randomized trial involving 24 children aged 6-14 years, classified as level I or II on the Gross Motor Function Classification System. The children were allocated into two groups: an intervention and a control group, and their families participated in the study...
October 5, 2016: Games for Health
Antonio Trabacca, Teresa Vespino, Antonella Di Liddo, Luigi Russo
Cerebral palsy (CP) is one of the most frequent causes of child disability in developed countries. Children with CP need lifelong assistance and care. The current prevalence of CP in industrialized countries ranges from 1.5 to 2.5 per 1,000 live births, with one new case every 500 live births. Children with CP have an almost normal life expectancy and mortality is very low. Despite the low mortality rate, 5%-10% of them die during childhood, especially when the severe motor disability is comorbid with epilepsy and severe intellectual disability...
2016: Journal of Multidisciplinary Healthcare
Nele Stahlmann, Nora Eisemann, Ute Thyen, Egbert Herting, Marion Rapp
Background Little is known about the psychosocial development and health-related quality of life (HRQOL) of extremely preterm infants once they are adolescents. Methods The regional population-based study cohort included 90 extremely premature infants (< 27(+0) gestational weeks) born between January 1997 and December 1999 in the German state of Schleswig-Holstein. In addition to a neurological and cognitive Wechsler Intelligence Scale for Children, 4th edition assessment, self- and parent-reported psychological problems (Strengths and Difficulties Questionnaire), and health-related quality of life (KINDL(R)) were obtained and compared with a general population of 3,737 adolescents using data from a German Health Interview and Examination Survey for Children and Adolescents (KiGGS survey 2003-2006, Robert Koch Institute, Germany)...
October 4, 2016: Neuropediatrics
Kim Foster, Alexandra Young, Rebecca Mitchell, Connie Van, Kate Curtis
INTRODUCTION: Physical injury is a leading cause of death and disability among children worldwide and the largest cause of paediatric hospital admission. Parents of critically injured children are at increased risk of developing mental and emotional distress in the aftermath of child injury. In the Australian context, there is limited evidence on parent experiences of child injury and hospitalisation, and minimal understanding of their support needs. The aim of this investigation was to explore parents' experiences of having a critically injured child during the acute hospitalisation phase of injury, and to determine their support needs during this time...
September 23, 2016: Injury
Klaus Sarimski, Manfred Hintermair, Markus Lang
Social-Emotional Competence in Young Children with Hearing, Visual or Intellectual Impairments - an Explorative Study with the ITSEA Early emotional and social competence is considered as an important requirement for social participation in family and child care settings. We report on a study exploring the usefulness of the competence scales as a part of the "Infant-Toddler Social and Emotional Assessment" (ITSEA) for one- to three-year old children in a sample of 253 toddlers with hearing, visual or intellectual impairments...
October 2016: Praxis der Kinderpsychologie und Kinderpsychiatrie
Capucine de Lattre
The regional health network for children and teenagers with disabilities in Rhône-Alpes (R4P) was created in 2007 with the objective of the amelioration of the quality of care. The main projects of the R4P concern training, harmonization of care, communication and research. R4P, as a health network for children with disabilities has two particularities: first, it concerns all type of disabilities, considering that families encounter the same kind of difficulties. Secondly, it includes all types of professionals concerned by children with disabilities: health care professionals of hospital and ambulatory care, social workers, administrations, and education professionals...
September 2016: Annals of Physical and Rehabilitation Medicine
Julia Hamonet-Torny
OPINION/FEEDBACK: INTRODUCTION: Despite of the politique for social inclusion leaded since the last decade, many specialized institutions for disabled children remained in France. This institutional field is varied and heterogenous, so difficult to understand from the exterior, particularly from the healthcare sector. The aim of this study was to evaluate the needs of the children accompanied within the Motor Education Institute of Couzeix in order to identify more precise indications to the placement...
September 2016: Annals of Physical and Rehabilitation Medicine
Mathilde Chevignard, Leila Francillette, Hanna Toure, Dominique Brugel, Philippe Meyer, Anne Laurent Vannier, Marion Opatowski, Laurence Watier
OBJECTIVE: Childhood traumatic brain injury (TBI) is the first cause of death and acquired disability and it represents a major public health issue. Childhood severe TBI can lead to motor, cognitive, behavioural and social cognition deficits, which have consequences on academic achievement, social integration, participation and quality of life. Consequences may only appear after a delay, when the skills are supposed to be fully developed. The aim of this study was to prospectively assess academic outcome, health-related quality of life (HRQoL), amount of ongoing care and participation, following childhood severe traumatic brain injury (TBI) over 7-8years post-injury, in comparison with a matched uninjured control group...
September 2016: Annals of Physical and Rehabilitation Medicine
Elspeth M Slayter
The promotion of speedy, permanent outcomes for foster children is a central child welfare policy goal. However, while children with intellectual disability (ID) are at greater risk for child welfare involvement, little is known about their case outcomes. This cross-sectional national study explores between-group foster care outcomes. Foster children with intellectual disability were more likely to have experienced an adoption disruption or dissolution but less likely to be reunified with a parent, primary caretaker or other family member...
October 2016: Intellectual and Developmental Disabilities
Marc Alexandre Duarte Gigonzac, Lilian Souza Teodoro, Lysa Berandes Minasi, Thaís Cidália Vieira, Aparecido Divino da Cruz
Fragile X Syndrome (FXS) is the most common cause of inherited intellectual disability. The most common etiology of the syndrome is expansion and methylation of a CGG trinucleotide at chromosome region Xq27.3 involving FMR1. This disorder is commonly underdiagnosed in children and adolescents, given the high clinical variability. In Brazil, molecular diagnosis of FXS by capillary electrophoresis does not exist in the public health system. The current standard for separation and identification of DNA fragment sizes is 50 cm capillary electrophoresis, which is uncommon in public genotyping laboratories...
September 26, 2016: Electrophoresis
Veronique Delvenne
Mental and behavioural problems during childhood and adolescence are a serious public concern and are increasing actually and in the next 10 years. In Belgium, policymakers have reorganize mental health care for children and adolescents in care circuits and care network that include and support intersectoral collaborations. They also support creation of mobile out-reach team for crisis and assertive care to help patient and their families in the least restrictive environment possible. Specific programs are developed for double diagnosis and disabled children but also juvenile offenders with psychiatric problems...
September 2016: Psychiatria Danubina
Cara Safon, Danya Keene, William J Ugarte Guevara, Sara Kiani, Darby Herkert, Erick Esquivel Muñoz, Rafael Pérez-Escamilla
Breastfeeding has been shown to improve maternal and child health. In Nicaragua, the primary risk of death and disability-adjusted life years among children under 5 years of age is suboptimal breastfeeding. Although the Nicaraguan Ministry of Health promotes exclusive breastfeeding from within the first half hour through the first 6 months of life, less than a third of children in the country under 6 months of age are exclusively breastfed. As part of a larger, mixed-methods study, 21 semi-structured, in-depth interviews were conducted with new mothers recruited from three primary health centers between June and August 2015 in order to identify the social, cultural, and structural factors that contribute to infant feeding practices and the discrepancy between recommendations and practices among mothers who delivered at an urban public hospital in León, Nicaragua...
September 20, 2016: Maternal & Child Nutrition
Lisa C Lindley, Laura V Trujillo
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i...
September 20, 2016: Hispanic Health Care International: the Official Journal of the National Association of Hispanic Nurses
Hanneke Basart, Hedy A van Oers, Emma C Paes, Corstiaan C Breugem, J Peter W Don Griot, Chantal M A M van der Horst, Lotte Haverman, Raoul C Hennekam
This patient-reported outcome (PRO) study reports on 102 children with Robin sequence (RS) and their parents. There has been differentiated between those with isolated RS and those with RS as part of a syndrome, and take various treatments into account. All RS families from an earlier described cohort were invited to participate. Parents and RS children completed online questionnaires regarding health-related quality of life (HRQoL), satisfaction with appearance, parental distress, and RS specific topics. Results were compared with the Dutch norm population if available...
September 20, 2016: American Journal of Medical Genetics. Part A
(no author information available yet)
There is a paucity of studies about nurses' personal experiences of grief, however in Learning Disability Practice, Paul Keenan and Ciara Mac Dermott explore the personal grief of nurses who care for the palliative needs of children with a learning disability. The authors argue that organisations must acknowledge that nurses should be allowed the opportunity to attend funerals for children who die in their care. While the study is small-scale, the research study highlights the need for education and support for nurses in the learning disability sector who care for children and families before and after a child's death...
August 24, 2016: Nursing Standard
Christine Imms, Mats Granlund, Peter H Wilson, Bert Steenbergen, Peter L Rosenbaum, Andrew M Gordon
This review outlines a conceptual approach to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. 'Participation' in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities to help ensure that young people with impairments reach their full potential across their lifespan. Intervention activities and research can focus on participation as either an independent or dependent variable...
September 19, 2016: Developmental Medicine and Child Neurology
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