Aim.?This study explored the experience of children with physical disabilities using assistive technology for participation with schoolwork to gain a greater understanding of their perspectives and subjective experiences.Method.?A qualitative study involving thematic analysis of in-depth interviews of the child with a parent or significant adult. Purposeful sampling from a larger study recruited five children aged between 10 and 14 years, with differing physical disabilities who attended mainstream schools. All children used computer-based assistive technology.Results.?All of the children recognised that assistive technology enabled them to participate and reduced the impact of their physical disability, allowing independent participation, and facilitated higher learning outcomes. Issues related to ease of use, social implications and assistive technology systems are discussed. 相似文献
Purpose.?To investigate the implementation of a web-based survey for involving children in the design of assistive technology devices within the primary school environment.Method.?Children were recruited within their normal school environment. They completed tasks within the survey that sought to gather their personal preferences about assistive technology devices. From six primary schools, 257 children (mean age?=?9 years and 8 months, SD?=?1.51; 123 males, 134 females) including children with cerebral palsy (N?=?11), varying levels of deafness (N?=?7), global developmental delay (N?=?2) and Down's syndrome (N?=?1) participated. Observations were taken whilst the children completed the survey tasks.Results.?All children were able to complete the tasks from the survey, although children with disabilities had higher completion times and most required a form of assistance from support assistants and/or sign language interpreters.Conclusions.?The use of the web-based survey provided a novel means with which to involve children with and without disabilities in the design of assistive technology devices within a primary school environment. In order for the survey to be utilised more widely, issues that arose when involving children with disabilities need to be addressed. 相似文献
AbstractThis commentary aims to extend the debate of the lead article authors () by translating the nine recommendations of the World Report on Disability into a plan of action for the aphasia community. Solutions for the advancement of aphasia science and services are presented at international (macro), national (meso), and local (micro) levels. Implications for speech-language pathologists and aphasia service delivery are discussed. An overarching call to action is the need for speech-language pathologists to support a strong and vibrant aphasia community at all levels, so that the voices of people with aphasia can be heard. 相似文献
AbstractPurpose: The purpose of this study is to explore the extent to which youth with physical disabilities encounter different barriers to finding employment compared to their typically developing peers. Methods: This study draws on 50 qualitative in-depth interviews with a purposive sample of 31 youth (16 typically developing and 15 with a disability), and youth employers and job counselors knowledgeable about employment readiness among adolescents (n?=?19). We utilize Bronfrebrenner’s ecological framework to reveal the complex web of factors shaping youth’s labor market outcomes. Results: Only half of youth with a disability were working or looking for work compared to their peers. The findings show this was a result of different expectations of, and attitudes toward, youth with disabilities. For many youth with a disability, their peers, family and social networks often acted as a barrier to getting a job. Many youth also lacked independence and life skills that are needed to get a job (i.e. self-care and navigating public transportation) compared to their peers. Job counselors focused on linking youth to employers and mediating parental concerns. Employers appeared to have weaker links to youth with disabilities. System level barriers included lack of funding and policies to enhance disability awareness among employers. Conclusions: Youth with physical disabilities encounter some similar barriers to finding employment compared to their typically developing peers but in a stronger way. Barriers to employment exist at several levels including individual, sociostructural and environmental. The results highlight that although there are several barriers to employment for young people at the microsystem level, they are linked with larger social and environmental barriers.
Implications for Rehabilitation
Clinicians working with youth should promote the development of skills that can lead to improved self-confidence and communication skills for youth. Encourage the development of extracurricular activities and social networking to build these skills and to make contacts for finding employment.
Clinicians should support youth with disabilities and their parents in practicing independence skills (such as self-care, self-advocacy and navigating public transportation) they need prior to seeking employment.
Vocational rehabilitation professionals should educate youth on how to disclose their condition to a potential employer, how to ask for ask for accommodations and how to market their abilities.
Clinicians should help to link youth with disabilities to volunteer opportunities and to employers. Advocate for disability awareness training for employers regarding how to accommodate people with disabilities and the potential they offer in the workplace.
AbstractPurpose: Clinical psychology and disability studies have traditionally occupied very different academic, philosophical and political spaces. However, this paper aims to illustrate the positive consequences and implications of attempts to understand and bridge this disciplinary divide. Method: A narrative review format was used with evidence selected pragmatically as opposed to systematically. The construction of the argument determined the evidence selected. Results: The concept of psycho-emotional disablism, which originated within disability studies, is argued to be a useful concept to bridge the divide between understandings of distress from both disability studies and clinical psychology perspectives. However, this can be usefully augmented by psychological research on the mechanisms through which disablism can affect individuals. Conclusion: Perspectives from both disability studies and clinical psychology can be usefully combined to bring important new perspectives; combined, these perspectives should help – on theoretical, service and social levels – to improve the mental health of disabled people.
Implications for Rehabilitation
Mental health is an important determinant of overall health-related quality of life and psychological therapy should be available for those disabled people who would value it.
Psychological therapists working with disabled people should be more aware of the challenging social context in which disabled people live.
Understandings of distress should not just include individual factors but also incorporate the psychological impact of stresses caused by societal barriers preventing inclusion.
Psychologists should be more willing to work and engage at a societal and political level to influence change.
PurposeBiallelic loss-of-function variants in ST3GAL5 cause GM3 synthase deficiency (GM3SD) responsible for Amish infantile epilepsy syndrome. All Amish patients carry the homozygous p.(Arg288Ter) variant arising from a founder effect. To date only 10 patients from 4 non-Amish families have been reported. Thus, the phenotypical spectrum of GM3SD due to other variants and other genetic backgrounds is still poorly known.MethodsWe collected clinical and molecular data from 16 non-Amish patients with pathogenic ST3GAL5 variants resulting in GM3SD.ResultsWe identified 12 families originating from Reunion Island, Ivory Coast, Italy, and Algeria and carrying 6 ST3GAL5 variants, 5 of which were novel. Genealogical investigations and/or haplotype analyses showed that 3 of these variants were founder alleles. Glycosphingolipids quantification in patients’ plasma confirmed the pathogenicity of 4 novel variants. All patients (N = 16), aged 2 to 12 years, had severe to profound intellectual disability, 14 of 16 had a hyperkinetic movement disorder, 11 of 16 had epilepsy and 9 of 16 had microcephaly. Other main features were progressive skin pigmentation anomalies, optic atrophy or pale papillae, and hearing loss.ConclusionThe phenotype of non-Amish patients with GM3SD is similar to the Amish infantile epilepsy syndrome, which suggests that GM3SD is associated with a narrow and severe clinical spectrum. 相似文献
A female patient, 20 years of age, is reported with a history characterized by developmental and psychomotor delay, and during grammar-school period increasing learning problems, ritualistic behaviours and social withdrawal. Subsequently, challenging and autistic-like behaviours became prominent. The patient showed mild facial dysmorphisms, long thin fingers with bilateral mild short V metacarpals, and hyperlaxity of the joints. Neuropsychiatric examination disclosed obsessive, ritualistic behaviours and vague ideas of reference. Neuropsychological assessment demonstrated mild intellectual disability, mental inflexibility and incongruent affect. MRI-scanning of the brain showed no relevant abnormalities. Genome wide SNP array analysis revealed a 1.2 Mb de novo interstitial microdeletion in 4q25 comprising 11 genes, that was considered to be causative for the developmental delay, perseverative cognitive phenotype and dysmorphisms.To the authors knowledge, this is the first report of a de novo 4q25 microdeletion that presents with a specific behavioural phenotype. 相似文献