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family of children with disability

Agnes Leu, Corinna Jung, Marianne Frech, Joe Sempik, Urs Moser, Martin Verner, Saul Becker
BACKGROUND: In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation...
March 15, 2018: BMC Health Services Research
C E Willis, S Reid, C Elliott, M Rosenberg, A Nyquist, R Jahnsen, S Girdler
BACKGROUND: The need to identify strategies that facilitate involvement in physical activity for children and youth with disabilities is recognised as an urgent priority. This study aimed to describe the association between context, mechanisms and outcome(s) of a participation-focused physical activity intervention to understand what works, in what conditions, and how. METHODS: This study was designed as a realist evaluation. Participant recruitment occurred through purposive and theoretical sampling of children and parents participating in the Local Environment Model intervention at Beitostolen Healthsports Centre in Norway...
March 15, 2018: BMC Pediatrics
Harshini Manohar, Pooja Patnaik Kuppili, Preeti Kandasamy, Venkatesh Chandrasekaran, Ravi Philip Rajkumar
BACKGROUND: Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder commonly associated with Attention Deficit Hyperactivity Disorder (ADHD), the prevalence ranging from 14-70%. The current study attempted to assess the impact of comorbid ADHD in children with ASD, in terms of challenges in diagnosis, treatment, intervention outcomes and parental stress and coping through a naturalistic design. METHODS: Fifty children aged 2-6 years with ASD were recruited, assessed and followed up for six months...
March 2, 2018: Asian Journal of Psychiatry
Verónica Schiariti, Eileen Fowler, Joline E Brandenburg, Eric Levey, Sarah Mcintyre, Theresa Sukal-Moulton, Sharon L Ramey, Jessica Rose, Susan Sienko, Elaine Stashinko, Laura Vogtle, Robin S Feldman, James I Koenig
To increase the efficiency and effectiveness of clinical research studies, cerebral palsy (CP) specific Common Data Elements (CDEs) were developed through a partnership between the National Institute of Neurological Disorders and Stroke (NINDS) and the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM). International experts reviewed existing NINDS CDEs and tools used in studies of children and young people with CP. CDEs were compiled, subjected to internal review, and posted online for external public comment in September 2016...
March 15, 2018: Developmental Medicine and Child Neurology
Eli T Newcomb, Louis P Hagopian
Children with autism spectrum disorder (ASD) and intellectual disabilities (ID) present with problem behaviour at rates disproportionately higher than their typically-developing peers. Problem behaviour, such as self-injury, aggression, pica, disruption, and elopement result in a diminished quality-of-life for the individual and family. Applied behaviour analysis has a well-established research base, detailing a number of assessment and treatment methods designed to address behaviour problems in children with ASD and ID...
March 14, 2018: International Review of Psychiatry
K Francis, A Dougali, K Sideri, C Kroupis, V Vasdekis, K Dima, A Douzenis
OBJECTIVE: Several lines of evidence point to a probable relationship between brain-derived neurotrophic factor (BDNF) and autism spectrum disorder (ASD), but studies have yielded inconsistent findings on the BDNF serum level in ASD. The study aimed to assess those levels in children with ASD and their families. METHOD: BDNF serum levels were measured in 45 ASD children without intellectual disability (ID) and allergies, age 30-42 months and age-matched normal controls...
March 13, 2018: Acta Psychiatrica Scandinavica
Catherine L Ward, Lillian Artz, Lezanne Leoschut, Reshma Kassanjee, Patrick Burton
BACKGROUND: We aimed to complete a nationally representative study of sexual violence against children in South Africa, and its correlates, since we could identify no other such study. METHODS: For this nationally representative, cross-sectional study in South Africa, households were selected by use of a multistage sampling frame, stratified by province, urban or rural setting, and race group, and schools were selected on the basis that they were closest to the area in which households were selected...
April 2018: Lancet Global Health
Christoph Rehmann-Sutter
Do we have a moral obligation to genetically cure embryos rather than selecting between them? Such an obligation would be an ethical argument for human germline gene editing (hGGE) to avoid the inheritance of genetic conditions instead of using pre-implantation genetic diagnosis (PGD). In this article, the intuition that we do have such a moral obligation is critically evaluated. The article first develops a theoretical framework for discussing the ethical questions of hGGE. This framework is based on an exploration of the phenomenology of the germline, from both biological and philosophical points of view...
April 2018: New Bioethics: a Multidisciplinary Journal of Biotechnology and the Body
Heather A Feldner, Samuel W Logan, James C Galloway
AIM: Rehabilitation professionals are increasingly recognizing mobility as a basic human right and endorsing the efficacy of early powered mobility for children with mobility impairments to foster independence, promote socialization with peers and facilitate participation in family and community life. However, the relationship between mobility and technology provision, when considered in the context of lived experiences of children with mobility impairments and their families, is complex and understudied...
March 9, 2018: Disability and Rehabilitation. Assistive Technology
AIlbhe Ruane, Alan Carr
The aim of this systematic review and meta-analysis was to examine the effectiveness of Stepping Stones Triple P (SSTP) parent training programs on child behavior problems and parenting outcomes in families of children with developmental disabilities. Sixteen suitable studies including data from over 900 families were identified in a search for English language published and unpublished controlled outcome studies. SSTP has five levels on a graded continuum of increasing intensity targeting families with differing degrees of treatment need from low intensity media-based parenting information campaigns at level 1, through brief interventions at levels 2 and 3, to more intensive parent training and family therapy interventions at levels 4 and 5...
March 9, 2018: Family Process
Julia J Sterman, Geraldine A Naughton, Anita C Bundy, Elspeth Froude, Michelle A Villeneuve
BACKGROUND: Despite indisputable developmental benefits of outdoor play, children with disabilities can experience play inequity. Play decisions are multifactorial; influenced by children's skills and their familial and community environments. Government agencies have responsibilities for equity and inclusion of people with disabilities; including in play. AIM: This multiple-perspective case study aimed to understand outdoor play decision-making for children with disabilities from the perspectives and interactions of: local government and families of primary school-aged children with disabilities...
March 8, 2018: Scandinavian Journal of Occupational Therapy
Ingrid Rafaella Dantas Dos Santos, Joseli Soares Brazorotto
In order to improve speech-language development in children with hearing impairment, in addition to speech-language therapy, the family should be the modifying agent for a satisfactory therapeutic response. Studies that analyze the effectiveness of speech-language pathology (SLP) intervention programs through video feedback are important, given the positive effects of this tool on the modification of behaviors with families of children with disabilities. Therefore, it is believed that video feedback interventions contribute improve the communicative interactions between the families and children assisted by auditory rehabilitation services...
March 5, 2018: CoDAS
Harshal Gupta, Yogesh Sabde
Background: For a long time, there have been arguments about which factors influence the skill development of students with intellectual disability in rehabilitation centers. Objective: The present follow-up study was thus planned to analyze the effect of the demographic variables related to disabled child, his/her parents and the family; their schooling pattern and types of study settings and the associated comorbidities on improvement in the performance score of students attending these study settings in one academic year...
January 2018: Indian Journal of Public Health
Cristiane S Paula, Jair J Mari, Isabel Altenfelder Santos Bordin, Euripedes C Miguel, Isabela Fortes, Natalia Barroso, Luis Augusto Rohde, Evandro Silva Freire Coutinho
PURPOSE: The purpose of the study is to identify early vulnerabilities for psychiatric disorders among Brazilian elementary school children, controlling for familial and community adversities. METHODS: This is a cross-sectional study examining the association between child psychiatric disorders and potential early vulnerabilities (disability, low intellectual quotient, and negative dimensions of the temperament trait self-directedness (low resourcefulness, low purposefulness, low enlightened second nature), controlling for the potential confounders: familial and community adversities...
March 6, 2018: Social Psychiatry and Psychiatric Epidemiology
Martin Nagl-Cupal, Julia Hauprich
Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers' personal needs. However, knowledge and understanding are limited regarding the needs of young carers' families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles...
March 5, 2018: Health & Social Care in the Community
Valerie Tobin
Obsessive-compulsive disorder (OCD) can be a disabling condition for children, adolescents, and their families. The majority of children and adolescents with OCD have poor academic functioning and a comorbid diagnosis. Many patients will respond with exposure and response prevention therapy. However, for those who are unable, unwilling, or do not fully respond to conservative treatment, it is essential that advanced practice nurses are able to appropriately evaluate and prescribe for OCD in their young patients...
March 1, 2018: Journal of Psychosocial Nursing and Mental Health Services
Jane Perkins, Rishi Agrawal
Children with medical complexity (CMC) often require multiple services across the continuum of care, such as therapies and home nursing. However, sufficient access to needed services is not assured and varies considerably by payer, many of whom who face pressures to control health spending. In this article, we review the rights of CMC in Medicaid, the Children's Health Insurance Program, and various forms of private health insurance to receive services that are necessary to promote optimal health, development, and family functioning...
March 2018: Pediatrics
Alma Glinac, Lejla Matović, Azra Delalić, Lejla Mešalić
The aim of the study was to investigate whether there is difference in the quality of life between mothers of children with cerebral palsy and mothers of healthy children, as well as whether the quality of life in mothers of children with cerebral palsy depends on their level of education, child's mobility and child's functional status. A total of 141 mothers participated in the research. Mothers were divided into two groups, 71 mothers of children with cerebral palsy and 70 mothers of healthy children from the Tuzla Canton (Bosnia and Herzegovina)...
June 2017: Acta Clinica Croatica
Helena Domeij, Gunilla Fahlström, Göran Bertilsson, Monica Hultcrantz, Heather Munthe-Kaas, Christina Nehlin Gordh, Gert Helgesson
AIM: To identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families. METHOD: A systematic literature search was conducted in six electronic databases: PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Scopus. Included studies were analysed using manifest content analysis...
February 26, 2018: Developmental Medicine and Child Neurology
Charlene M T Robertson, Shannon M DeForge, Cara F Dosman
Objectives: To determine the domains of parent-therapist collaboratively set goals for intervention within a family-centered, tertiary-level early developmental intervention (EDI) program. To report changes in ratings for performance and satisfaction of performance pre- and postintervention for the set goals. Methods: This study includes all children with complex developmental disabilities (30 ± 3 months of age, 61% boys) registered in a tertiary-level EDI program from 2009 to 2012 whose parents completed the Canadian Occupational Performance Measure (COPM) to evaluate goal setting...
July 2017: Paediatrics & Child Health
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