Background: Deaf-blindness is a disability encompassing varying degrees of hearing impairment and low vision together. Congenital deafblindness is when its onset under 2 years age. Objectives: In ...India, there are no organized data for deafblindness and estimates indicate there could be more than 500,000 deafblind people. Voluntary organizations provide unwavering support to deafblind children and adults alike. Methodology: (i) early identification (ii) prompt referral for community rehabilitation (iii) early assessment and intervention by identification of high- risk children (iv) individualized education to monitor progress (v) continued review and planning for further education and employment in adulthood. Results: Primary prevention by (i) immunization against Rubella to prevent Congenital Rubella syndrome; (ii) education of all women of childbearing age about healthy habits and avoiding alcohol and drug use; and (iii) accessible antenatal health care for all pregnant women. Conclusion: Strategists and politicians need joint up thinking with perseverance and a strong will to tackle this condition with long term sustained input. They are urged to consider deafblindness as a distinct category in the national census and survey counts.
The onset of deafblindness profoundly impacts both the individual with this condition and the individual's family, including siblings. While current studies have primarily focused on the impact felt ...by parents or spouses, the distinct experiences of siblings have received comparatively less attention. This systematic review addresses the existing research gap regarding the psychological and social consequences experienced by siblings of individuals with deafblindness. A comprehensive search was conducted across multiple electronic databases, including PsycINFO, PsycARTICLES, Dissertations & Theses (on ProQuest), ERIC (Education Resources Information Center), International Bibliography of the Social Sciences (IBSS), Sociological Abstracts, Google Scholar, PubMed, and Cairn Info. Seven studies were identified as meeting the eligibility criteria for inclusion. The review revealed that siblings of individuals with deafblindness face psychological and social challenges, including emotions such as feelings of neglect, resentment, embarrassment, jealousy, and anxiety. Siblings also grapple with communication difficulties, contributing to feelings of exclusion and insecurity. In addition, these siblings take on significant responsibilities within the family and encounter obstacles in forming relationships outside the family. These findings underscore the need of interventions to improve the well-being of siblings of individuals with deafblindness by addressing their psycho-emotional needs and promoting positive social interactions. These findings align with studies conducted on siblings of children with other disabilities. However, additional research is crucial to investigate overlooked dimensions, particularly positive factors like coping mechanisms and resilience, that may influence the mental health and social experiences of these siblings.
Caeski is a keyboard with 12 vibrating keys that connects to an application via smartphone. This assistive technology aims to facilitate the communication of persons with deafblindness in presential ...contexts or with people who can be anywhere in the world. The purpose is to present this assistive technology and analyse the viability of its use through tests with eleven persons with deafblindness.
The study design consisted of ten days of testing with eleven persons with deafblindness and five interpreters who had the function of passing the information about the content of the tests.
The tests showed that most participants were able to communicate through Caeski. In addition, the tests showed the need to add the function of repeating the reception of information via vibration to confirm the understanding. The results demonstrated the need for more training time to improve the learning of accented words and long sentences. Therefore, training time and previous contact with technological devices are factors that influence the result of the tests.
The use of Caeski is feasible and as future perspectives, this assistive technology can be used in association with similar assistive technologies such as Perkins Machine and Braille Line, preventing possible tactile overloads. In addition, can be applied in the educational context, from literacy to university. Studies with longer training time should be conducted to confirm the results.
The implications for rehabilitation:
Social interactions, presential and online, with deafblind and non-deafblind persons anywhere in the world.
Literacy and cognitive development of persons with deafblindness.
Digital inclusion for occupational, school or academic contexts.
Communication opportunities for individuals with dual sensory impairments and mainstream society are supported by technical aids. A number of research teams are developing technical aids to ...facilitate and directly mediate communication. However, the complexity of the technological solution means that many of these aids do not reach the practical world and people with dual sensory impairments are not able to use them. This review study offers insights into the development of technological solutions and their application in practice.
Deafblindness is a type of dual disability wherein both visual and auditory capabilities are significantly impaired. Special communication methods have been developed for the deafblind community, yet ...these methods require that both people involved have prior knowledge and training to successfully communicate; limiting deafblind people’s social interactions, particularly in academic settings. This paper describes the development of a device that enables two-way communication between a severe to profoundly deafblind user and a hearing person with no prior knowledge of Braille and no additional intermediaries. A Convolutional Neural Network (CNN) scheme for speech recognition was designed and implemented along with the development of an algorithm capable of developing both text-to-speech and Finger-Braille-to-text conversion. Lastly, a system integration via 3D modelling and additive manufacturing was carried out to deliver a functional prototype. The resulting device aims to allow deafblind students to send and receive information entirely in finger Braille, using buttons and vibrotactile feedback, while the hearing tutor receives auditory messages and speaks to reply, making the educational experience as familiar as possible for both parties. Users testing the device achieved an average typing accuracy of over 95% and demonstrated understanding of commands transmitted through the device’s components.
How do deaf and deafblind individuals process touch? This question offers a unique model to understand the prospects and constraints of neural plasticity. Our brain constantly receives and processes ...signals from the environment and combines them into the most reliable information content. The nervous system adapts its functional and structural organization according to the input, and perceptual processing develops as a function of individual experience. However, there are still many unresolved questions regarding the deciding factors for these changes in deaf and deafblind individuals, and so far, findings are not consistent. To date, most studies have not taken the sensory and linguistic experiences of the included participants into account. As a result, the impact of sensory deprivation vs. language experience on somatosensory processing remains inconclusive. Even less is known about the impact of deafblindness on brain development. The resulting neural adaptations could be even more substantial, but no clear patterns have yet been identified. How do deafblind individuals process sensory input? Studies on deafblindness have mostly focused on single cases or groups of late-blind individuals. Importantly, the language backgrounds of deafblind communities are highly variable and include the usage of tactile languages. So far, this kind of linguistic experience and its consequences have not been considered in studies on basic perceptual functions. Here, we will provide a critical review of the literature, aiming at identifying determinants for neuroplasticity and gaps in our current knowledge of somatosensory processing in deaf and deafblind individuals.
Abstract Background The present study aimed to test the hypothesis stating that the cognitive potential of individuals with deafblindness is equal to those without a deafblind condition, an ...assumption that until now has been empirically unsubstantiated within the field of deafblindness. Methods To explore the assumption, 15 children and adolescents with CHARGE underwent cognitive assessment with WISC-V using a sequential two-level assessment design. The 1st level involved standardized test conditions. The 2nd level was designed as a continuation of the performances obtained from the 1st level and involved accommodations to compensate for sensory motor impairment. Statistical procedures involved the sample as a whole and when divided into two subgroups: (i) participants with CHARGE without deafblindness; (ii) participants with CHARGE and deafblindness using the 1st level scores as base line. Results Although results showed significantly lower scores in the deafblind subgroup with standardized procedures, they approximated the others after accommodating for their sensory deficits. This positive increase proved significant. Conclusion Findings supported the assumption of equal cognitive potential of individuals with and without deafblindness. Results indicated that the children and adolescents with deafblindness had most effect of the accommodations, enabling them to approximate the results of the subgroup without deafblindness. These gains were attributed enhanced accessibility endorsed by the accommodations and represented the participants latent cognitive dispositions only realized under certain circumstances.
Usher Syndrome: Genetics of a Human Ciliopathy Fuster-García, Carla; García-Bohórquez, Belén; Rodríguez-Muñoz, Ana ...
International journal of molecular sciences,
07/2021, Letnik:
22, Številka:
13
Journal Article
Recenzirano
Odprti dostop
Usher syndrome (USH) is an autosomal recessive syndromic ciliopathy characterized by sensorineural hearing loss, retinitis pigmentosa and, sometimes, vestibular dysfunction. There are three clinical ...types depending on the severity and age of onset of the symptoms; in addition, ten genes are reported to be causative of USH, and six more related to the disease. These genes encode proteins of a diverse nature, which interact and form a dynamic protein network called the “Usher interactome”. In the organ of Corti, the USH proteins are essential for the correct development and maintenance of the structure and cohesion of the stereocilia. In the retina, the USH protein network is principally located in the periciliary region of the photoreceptors, and plays an important role in the maintenance of the periciliary structure and the trafficking of molecules between the inner and the outer segments of photoreceptors. Even though some genes are clearly involved in the syndrome, others are controversial. Moreover, expression of some USH genes has been detected in other tissues, which could explain their involvement in additional mild comorbidities. In this paper, we review the genetics of Usher syndrome and the spectrum of mutations in USH genes. The aim is to identify possible mutation associations with the disease and provide an updated genotype–phenotype correlation.
Purpose: Deafblindness, also known as dual sensory loss, creates a distinct condition more disabling than either deafness or blindness alone. The participation experiences of persons with ...deafblindness have not been understood well. This phenomenological study aims to understand the meanings of participation for persons with deafblindness and identify the domains of life that are important to them.
Methods: We used the International Classification of Functioning, Disability and Health as a guiding framework. Sixteen adults with deafblindness were interviewed between March and May 2017 in India using a qualitative interview guide.
Results: Findings suggest participation as a dynamic, individualized construct that is not just an end outcome. Rather, it is a means to achieve other goals important to the participants such as gaining respect, autonomy, independence, support and relationships, to fulfill aspirations and responsibilities, and to feel included and recognized in society. Life domains that they deemed important for participation were communication and access to information, mobility, relationships, education and productivity, and recreation and leisure.
Conclusions: In order to enhance societal participation of people with deafblindness, a significant change in the focus of rehabilitation services is required which involves professionals viewing participation as both a means and an end outcome while designing interventions.
There is wide variability in the special education eligibility criteria for deafblindness across the United States. This study was a novel examination of variations in state factors, including ...eligibility criteria for deafblindness, to identify potential relationships between state factors and the number of students who are deafblind during the 2018–2019 school year. No state factors correlated to the OSEP Child Count population data. Multiple linear regression analysis revealed factors primarily relating to sensory disability professionals, which correlated to the National Center on Deaf-Blindness population data. Implications for students, personnel, and professional development offerings are discussed.
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