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https://www.readbyqxmd.com/read/29351919/high-yield-of-pathogenic-germline-mutations-causative-or-likely-causative-of-the-cancer-phenotype-in-selected-children-with-cancer
#1
Illja Diets, Esmé Waanders, Marjolijn J L Ligtenberg, Diede van Bladel, Eveline J Kamping, Peter M Hoogerbrugge, Saskia Hopman, Maran J W Olderode-Berends, Erica H Gerkes, David Koolen, Carlo Marcelis, Gijs We Santen, Martine van Belzen, Dylan Mordaunt, Lesley McGregor, Elizabeth Thompson, Antonis Kattamis, Agata Pastorczak, Wojciech Mlynarski, Denisa Ilencikova, Anneke Vulto-van Silfhout, Thatjana Gardeitchik, E S J M de Bont, Jan Loeffen, Anja Wagner, Arjen R Mensenkamp, Roland P Kuiper, Nicoline Hoogerbrugge, Marjolijn Jongmans
PURPOSE: In many children with cancer and characteristics suggestive of a genetic predisposition syndrome, the genetic cause is still unknown. We studied the yield of pathogenic mutations by applying whole exome sequencing on a selected cohort of children with cancer. EXPERIMENTAL DESIGN: To identify mutations in known and novel cancer predisposing genes, we performed trio-based whole exome sequencing on germline DNA of 40 selected children and their parents. These children were diagnosed with cancer and had at least one of the following features: (1) intellectual disability and/or congenital anomalies, (2) multiple malignancies, (3) family history of cancer or (4) an adult type of cancer...
January 19, 2018: Clinical Cancer Research: An Official Journal of the American Association for Cancer Research
https://www.readbyqxmd.com/read/29345224/therapy-interventions-for-children-with-neurodisabilities-a-qualitative-scoping-study
#2
Bryony Beresford, Susan Clarke, Jane Maddison
BACKGROUND: Therapy interventions emerged four times in the top 10 research priorities in a James Lind Alliance research prioritisation exercise for children with neurodisabilities (Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, et al. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open 2015;5:e006233). The National Institute for Health Research (NIHR) commissioned this study as part of an information-gathering exercise in response to this...
January 2018: Health Technology Assessment: HTA
https://www.readbyqxmd.com/read/29344751/associations-between-early-intervention-home-visits-family-relationships-and-competence-for-mothers-of-children-with-developmental-disabilities
#3
Morgan K Crossman, Marji Erickson Warfield, Milton Kotelchuck, Penny Hauser-Cram, Susan L Parish
Objectives To examine the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life events. Methods Data were drawn from the Early Intervention Collaborative Study (EICS), a 24-year longitudinal investigation of approximately 190 families of children with developmental disabilities who participated in EI programs in Massachusetts and New Hampshire...
January 17, 2018: Maternal and Child Health Journal
https://www.readbyqxmd.com/read/29343234/from-the-day-they-are-born-a-qualitative-study-exploring-violence-against-children-with-disabilities-in-west-africa
#4
Janet Njelesani, Goli Hashemi, Cathy Cameron, Deb Cameron, Danielle Richard, Penny Parnes
BACKGROUND: Despite the building evidence on violence against children globally, almost nothing is known about the violence children with disabilities in low and middle-income countries (LMICs) experience. The prevalence of violence against children with disabilities can be expected to be higher in LMICs where there are greater stigmas associated with having a child with a disability, less resources for families who have children with disabilities, and wider acceptance of the use of corporal punishment to discipline children...
January 17, 2018: BMC Public Health
https://www.readbyqxmd.com/read/29341204/gender-parental-education-and-experiences-of-bullying-victimization-by-australian-adolescents-with-and-without-a-disability
#5
A Kavanagh, N Priest, E Emerson, A Milner, T King
BACKGROUND: This study sought to compare the prevalence of bullying victimization between adolescents with and without a disability and between adolescents with and without borderline intellectual functioning or intellectual disability (BIF/ID). We also sought to assess whether the relationships between either disability or BIF/ID and bullying victimization vary by gender and parental education. METHODS: The sample included 3,956 12- to 13-year-old adolescents who participated in Wave 5 of the Longitudinal Study of Australian Children...
January 16, 2018: Child: Care, Health and Development
https://www.readbyqxmd.com/read/29336507/-learn-ing-what-is-important-to-children-and-young-people-with-intellectual-disabilities-when-they-are-in-hospital
#6
K Oulton, D Sell, F Gibson
BACKGROUND: The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital-related needs and experiences of CYP with intellectual disabilities. METHOD: An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting...
January 16, 2018: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/29331657/views-of-teenage-children-about-the-effects-of-a-parent-s-mobility-disability
#7
Lisa I Iezzoni, Amy J Wint, Alexy Arauz Boudreau, Cheri A Blauwet, Karen A Kuhlthau
BACKGROUND: Few U.S. studies have explored how children experience a parent's mobility disability and its effects on their daily lives. OBJECTIVE: We aimed to engage youth ages 13-17 who had at least one parent with mobility disability in describing their perceptions of their parent's disability and its consequences for their daily and family life. METHODS: Participants videoed and photographed their experiences following general guidelines from the researchers about topics of interest...
December 29, 2017: Disability and Health Journal
https://www.readbyqxmd.com/read/29327378/comparing-impact-on-the-family-and-insurance-coverage-in-children-with-cerebral-palsy-and-children-with-another-special-healthcare-need
#8
B Schaible, G Colquitt, M C Caciula, A Carnes, L Li, N Moreau
BACKGROUND: Families and caregivers of children with special healthcare needs (CSHCN) often experience financial difficulties, have unmet physical and mental health needs, and are at increased risk of marital problems due to the stress caused by carrying for their child. Within the larger population of CHSCN, young people with cerebral palsy (CP) have more unmet needs due to the complexity and potential severity of the disability. The purpose of this study was to identify factors associated with differences in insurance coverage and impact on the family of children with CP and other CHSCN...
January 12, 2018: Child: Care, Health and Development
https://www.readbyqxmd.com/read/29327140/children-s-experiences-of-congenital-heart-disease-a-systematic-review-of-qualitative-studies
#9
REVIEW
Lauren S H Chong, Dominic A Fitzgerald, Jonathan C Craig, Karine E Manera, Camilla S Hanson, David Celermajer, Julian Ayer, Nadine A Kasparian, Allison Tong
We aimed to describe the experiences of children and adolescents with congenital heart disease (CHD). Electronic databases were searched until August 2016. Qualitative studies of children's perspectives on CHD were included. Data was extracted using thematic synthesis. From 44 studies from 12 countries involving 995 children, we identified 6 themes: disrupting normality (denying the diagnosis, oscillating between sickness and health, destabilizing the family dynamic), powerlessness in deteriorating health (preoccupation with impending mortality, vulnerability to catastrophic complications, exhaustion from medical testing), enduring medical ordeals (traumatized by invasive procedures, disappointed by treatment failure, displaced by transition, valuing empathy and continuity in care, overcoming uncertainty with information), warring with the body (losing stamina, distressing inability to participate in sport, distorted body image, testing the limits), hampering potential and goals (feeling disabled, unfair judgment and exclusion, difficulties with academic achievement, limiting attainment and maintenance of life milestones), and establishing one's own pace (demarcating disease from life, determination to survive, taking limitations in their stride, embracing the positives, finding personal enrichment, relying on social or spiritual support)...
January 11, 2018: European Journal of Pediatrics
https://www.readbyqxmd.com/read/29325175/early-parental-abuse-and-daily-assistance-to-aging-parents-with-disability-associations-with-the-middle-aged-adults-daily-well-being
#10
Yin Liu, Jooyoung Kong, Lauren R Bangerter, Steven H Zarit, David M Almeida
Objectives: The current study examined the within-person association between providing daily assistance to aging parents with disability and adult children's daily mood in the context of early relationship with parents. Methods: We used data from 782 participants and 5,758 daily interviews from the Midlife in the United States (MIDUS) Refresher, with 248 people self-reported providing daily assistance ranging from 1 to 8 days out of the entire daily-interview period...
January 9, 2018: Journals of Gerontology. Series B, Psychological Sciences and Social Sciences
https://www.readbyqxmd.com/read/29316811/the-adult-carer-quality-of-life-questionnaire-ac-qol-comparison-with-measures-of-burden-and-well-being-and-italian-validation
#11
Luca Negri, Gianna Piazza, Raffaela D G Sartori, Mario G Cocchi, Antonella Delle Fave
PURPOSE: Family caregivers are essential assets in the rehabilitation process, and their psychophysical health should represent a concern for healthcare services. This study aims to investigate the psychometric properties of the Adult Carer Quality of Life Questionnaire, Italian version, and its convergent-discriminant validity with measures of caring burden, resilience, health, and well-being. MATERIALS AND METHODS: Participants were 591 parents (89.2% females; aged 25-69) of children treated as outpatients in 14 centers of "Istituto Medea - La Nostra Famiglia", an Italian rehabilitation institution...
January 10, 2018: Disability and Rehabilitation
https://www.readbyqxmd.com/read/29305346/a-de-novo-nonsense-mutation-in-asxl3-shared-by-siblings-with-bainbridge-ropers-syndrome
#12
Daniel C Koboldt, Theresa Mihalic Mosher, Benjamin J Kelly, Emily Sites, Dennis Bartholomew, Scott E Hickey, Kim McBride, Richard K Wilson, Peter White
Two sisters (ages 16 y. and 15 y.) have been followed by our clinical genetics team for several years. Both girls have severe intellectual disability, hypotonia, seizures, and distinctive craniofacial features. The parents are healthy, and have no other children. Oligo array, fragile X testing, and numerous single-gene tests were negative. All four family members underwent research exome sequencing, which revealed a heterozygous nonsense mutation in ASXL3 (p.R1036X) that segregated with disease. Exome data and independent Sanger sequencing confirmed that the variant is de novo, suggesting possible germline mosaicism in one parent...
January 5, 2018: Cold Spring Harbor Molecular Case Studies
https://www.readbyqxmd.com/read/29304784/ethical-aspects-of-diagnosis-and-interventions-for-children-with-fetal-alcohol-spectrum-disorder-fasd-and-their-families
#13
Gert Helgesson, Göran Bertilsson, Helena Domeij, Gunilla Fahlström, Emelie Heintz, Anders Hjern, Christina Nehlin Gordh, Viviann Nordin, Jenny Rangmar, Ann-Margret Rydell, Viveka Sundelin Wahlsten, Monica Hultcrantz
BACKGROUND: Fetal alcohol spectrum disorders (FASD) is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. METHODS: Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions with experts in the field, published literature, and medical ethicists...
January 5, 2018: BMC Medical Ethics
https://www.readbyqxmd.com/read/29301539/development-of-an-inventory-of-goals-using-the-international-classification-of-functioning-disability-and-health-in-a-population-of-non-ambulatory-children-and-adolescents-with-cerebral-palsy-treated-with-botulinum-toxin-a
#14
Linda Nguyen, Ronit Mesterman, Jan Willem Gorter
BACKGROUND: In the management of hypertonicity in children with cerebral palsy (CP), goals should be clearly identified in order to evaluate the effectiveness of botulinum toxin A (BoNT-A) treatment, specifically in non-ambulatory children and adolescents, Gross Motor Function Classification System (GMFCS), level IV or V. A retrospective chart review (Mesterman et al., 2013) identified the need for the development of a set of specific and meaningful goals linked to the International Classification of Functioning, Disability and Health (ICF) for future goal setting and evaluation in this population...
January 4, 2018: BMC Pediatrics
https://www.readbyqxmd.com/read/29299970/inconsistent-device-use-in-pediatric-cochlear-implant-users-prevalence-and-risk-factors
#15
Kathryn B Wiseman, Andrea D Warner-Czyz
OBJECTIVES: Cochlear implants (CIs) afford an opportunity for children with a significant hearing loss to access spoken language through auditory input, but challenges post-implantation could impede success. Inconsistent device use occurs when a child wears their device less than full-time (<8 hours per day). Previous studies may underestimate the prevalence of inconsistent device use in pediatric CI users due to methodological issues (subjective parent report vs. objective measures)...
January 4, 2018: Cochlear Implants International
https://www.readbyqxmd.com/read/29294765/victimized-for-being-different-young-adults-with-disabilities-and-peer-victimization-in-middle-and-high-school
#16
Caroline I McNicholas, Pamela Orpinas, Katherine Raczynski
Children who are victims of peer aggression can suffer negative emotional, academic and physical consequences that can last into adulthood. Previous research indicates children with disabilities are victimized up to 4 times as often as children without disabilities. However, their unique needs are often not considered in the design and implementation of prevention interventions. The current study examined the perceived effects of family, peer, and school support among children with disabilities to protect them from or help them cope with peer victimization...
May 1, 2017: Journal of Interpersonal Violence
https://www.readbyqxmd.com/read/29285632/infant-health-and-future-childhood-adversity
#17
Nancy E Reichman, Hope Corman, Kelly Noonan, Manuel E Jiménez
Objective To investigate the extent to which disabling infant health conditions are associated with adverse childhood experiences at age 5. Methods We conducted a secondary analysis of data from the Fragile Families and Child Wellbeing Study, a national urban birth cohort. We estimated logistic regression models of associations between the presence of a disabling infant health condition and the child's ACE exposures at age 5, controlling for factors that preceded the child's birth, including the mother's sociodemographic characteristics, physical health, mental illness, and substance abuse and the parents' criminal justice system involvement and domestic violence or sexual abuse...
December 28, 2017: Maternal and Child Health Journal
https://www.readbyqxmd.com/read/29276325/family-peer-linkages-for-children-with-intellectual-disability-and-children-with-learning-disabilities
#18
Frank J Floyd, Darren L Olsen
Family interactions are potential contexts for children with intellectual and learning disabilities to develop skillful social behaviors needed to relate effectively with peers. This study examined problem solving interactions within families of elementary school-age children (7-11 years) with intellectual disability (n = 37), specific learning disabilities (n =48), and without disabilities (n = 22). After accounting for group differences in children's behaviors and peer acceptance, across all groups, mothers' behaviors that encouraged egalitarian problem solving predicted more engaged and skillful problem solving by the children...
September 2017: Journal of Applied Developmental Psychology
https://www.readbyqxmd.com/read/29258352/cultural-adaptation-and-construct-validation-of-the-arabic-version-of-children-s-assessment-of-participation-and-enjoyment-and-preferences-for-activities-of-children-measures
#19
Nihad A Almasri, Robert J Palisano, Lin-Ju Kang
PURPOSE: To establish the construct validity and internal consistency of the Arabic Children Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC) and to determine the effects of age, gender, and disability status on diversity and intensity of participation. METHODS: The World Health Organization guidelines for translation of measures were applied to translate the CAPE and PAC, 75 children with cerebral palsy (mean age = 10...
December 19, 2017: Disability and Rehabilitation
https://www.readbyqxmd.com/read/29248807/parental-perceptions-of-facilitators-and-barriers-to-physical-activity-for-children-with-intellectual-disabilities-a-mixed-methods-systematic-review
#20
REVIEW
Arlene M McGarty, Craig A Melville
BACKGROUND: There is a need increase our understanding of what factors affect physical activity participation in children with intellectual disabilities (ID) and develop effective methods to overcome barriers and increase activity levels. AIM: This study aimed to systematically review parental perceptions of facilitators and barriers to physical activity for children with ID. METHODS: A systematic search of Embase, Medline, ERIC, Web of Science, and PsycINFO was conducted (up to and including August, 2017) to identify relevant papers...
December 14, 2017: Research in Developmental Disabilities
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