Definitions of deafblindness and congenital deafblindness

Larsen, Flemming Ask; Damen, Saskia

doi:10.1016/j.ridd.2014.05.029

Cited by 66 publications

(70 citation statements)

References 40 publications

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“…The DSI older participants in our study acquired DSI at an advanced age, having led a ‘normal’ life, and therefore being accustomed to participating in a hearing and sighted community and using spoken language. Despite these differences, our finding of participation problems among the DSI older adults is in line with the literature on these deafblind younger adults, who describe participation problems as the main and overarching risk of deafblindness [26–28]. There is a strong similarity between the category lack of access that we found among the older adults, and the three classic domains that are usually aimed at in deafblind rehabilitation, i.e.…”

Section: Discussionsupporting

confidence: 89%

Problems identified by dual sensory impaired older adults in long-term care when using a self-management program: A qualitative study

et al. 2017

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ObjectiveTo gain insights into the problems of dual sensory impaired older adults in long-term care. Insights into these problems are essential for developing adequate policies which address the needs of the increasing population of dual sensory impaired older adults in long-term care.MethodsA qualitative study was conducted in parallel with a cluster randomized controlled trial. Dual sensory impaired older adults in the intervention group (n = 47, age range 82–98) were invited by a familiar nurse to identify the problems they wanted to address. Data were taken from the semi-structured intervention diaries in which nurses noted the older adults’ verbal responses during a five-month intervention period in 17 long-term care homes across the Netherlands. The data were analyzed using descriptive statistics and qualitative content analysis based on the Grounded Theory.FindingsThe 47 dual sensory impaired older adults identified a total of 122 problems. Qualitative content analysis showed that the older adults encountered participation problems and problems controlling what happens in their personal environment. Three categories of participation problems emerged: (1) existential concerns of not belonging or not being able to connect with other people, (2) lack of access to communication, information and mobility, and (3) the desire to be actively involved in care delivery. Two categories of control-in-personal-space problems emerged: (1) lack of control of their own physical belongings, and (2) lack of control regarding the behavior of nurses providing daily care in their personal environment.ConclusionsThe invasive problems identified indicate that dual sensory impaired older adults experience great existential pressures on their lives. Long-term care providers need to develop and implement policies that identify and address these problems, and be aware of adverse consequences of usual care, in order to improve dual sensory impaired residents’ autonomy and quality of life.

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Section: Discussionsupporting

confidence: 89%

Problems identified by dual sensory impaired older adults in long-term care when using a self-management program: A qualitative study

et al. 2017

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“…A purpose of ICF, and definitions developed in line with the framework, is to point out the complexity of disabilities, and the need to apply holistic and interdisciplinary perspectives in order to better understand the impact of an impairment in different settings and individuals. Typically, though, the definitions which have been applied in empirical studies of DB have been less holistic and fit to the perspective of the study in a more narrow fashion, such as a medical definition only (Ask Larsen & Damen, 2014). The definitions of deafblindness (DB) used in research on DB and congenital DB were recently investigated and the results were published in a review by Ask Larsen and Damen, (2014).…”

Section: Deafblindnessmentioning

confidence: 99%

“…Typically, though, the definitions which have been applied in empirical studies of DB have been less holistic and fit to the perspective of the study in a more narrow fashion, such as a medical definition only (Ask Larsen & Damen, 2014). The definitions of deafblindness (DB) used in research on DB and congenital DB were recently investigated and the results were published in a review by Ask Larsen and Damen, (2014). The authors found the definitions applied to vary, which makes comparisons across studies and generalizations of findings difficult.…”

Section: Deafblindnessmentioning

confidence: 99%

“…The authors found the definitions applied to vary, which makes comparisons across studies and generalizations of findings difficult. Ask Larsen and Damen (2014) recommend that at least one of seven minimal criteria should be used in order to define DB, thus facilitating comparisons across studies. In the present thesis, definition of DB itself has been secondary to the definition of the selected study groups, as the aim was to describe aspects of cognitive abilities and skills in the largest population with genetically caused DB, i.e., individuals with Usher Syndrome.…”

Section: Deafblindnessmentioning

confidence: 99%

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Cognitive capacities and composite cognitive skills in individuals with Usher syndrome type 1 and 2

Henricson

2015

Studies From the Swedish Institute for Disability Research

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“…Deafblindness is broadly defined as any combination of both a visual and auditory impairment, and may be congenital or acquired. In this article, no boundaries are set for the severity of visual and auditory impairments (see: Hoevenaars-Van Den Boom et al, 2009;Larsen & Damen, 2014). Especially for this group, clinicians are often asked to assess the presence of ASD.…”

Section: Introductionmentioning

confidence: 99%

A Critical Review of Screening and Diagnostic Instruments for Autism Spectrum Disorders in People with Sensory Impairments in Addition to Intellectual Disabilities

Vaan

Vervloed

Boom

et al. 2016

Journal of Mental Health Research in Intellectual Disabilities

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Instruments that are used for diagnosing of, or screening for, autism spectrum disorder (ASD) may not be applicable to people with sensory disabilities in addition to intellectual disabilities. First, because they do not account for equifinality, the possibility that different conditions may lead to the same outcome. Second, because they do not have appropriate norms for this target population. The current study reviewed 20 instruments commonly used in the assessment of screening for and diagnosing ASD. Reviewed were: purpose, number of items, psychometric properties (norms, reliability, and validity), test availability, and item applicability for people with sensory and intellectual disabilities. Most instruments did not have norms for the target population and all instruments consisted of a quarter or more of invalid items. When using current instruments, caution is required in interpreting test results. For proper assessment of ASD in people with sensory and intellectual disabilities, more instruments are needed that are adapted to the sensory and intellectual disabilities of this population.

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Definitions of deafblindness and congenital deafblindness

Cited by 66 publications

References 40 publications

Problems identified by dual sensory impaired older adults in long-term care when using a self-management program: A qualitative study

Problems identified by dual sensory impaired older adults in long-term care when using a self-management program: A qualitative study

Cognitive capacities and composite cognitive skills in individuals with Usher syndrome type 1 and 2

A Critical Review of Screening and Diagnostic Instruments for Autism Spectrum Disorders in People with Sensory Impairments in Addition to Intellectual Disabilities

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