Characteristics of Individuals with Congenital and Acquired Deaf-Blindness

Abstract

Using a standardized assessment instrument, the authors compared 182 adults with congenital deaf-blindness and those with acquired deaf-blindness. They found that those with congenital deaf-blindness were more likely to have impairments in cognition, activities of daily living, and social interactions and were less likely to use speech for communication.

Sensory and demographic characteristics of deafblindness rehabilitation clients in Montréal, Canada

“…Rönnberg et al 20 presented data on visual acuity, visual field and pure-tone average dB hearing loss in 13 intellectually intact participants (age 17-80) with dual impairment; however, these individuals were all profoundly hearing impaired and may not be representative of the general client profile. Dalby et al 21 described 182 participants with congenital or acquired deaf-blindness whereby 30.2% self-reported being severely impaired in both senses and 48.3% described themselves as severely impaired in one sensory modality and mildly or moderately impaired in the other, as measured by the Deafblind Severity Index. 22 This measure provides valuable information about the subjective level of perceived functioning; however, since no behavioral measures of visual or hearing status were provided, it is not possible at this time to compare the perceived level of impairment with the objective eligibility criteria for rehabilitation services, or evaluate to which level one is a good indicator of the other.…”

A qualitative evaluation of the National Expert Team regarding the assessment and diagnosis of deafblindness in Sweden

“…The value of accumulated knowledge is not surprising, as persons with deafblindness are a rare and heterogeneous population (Dammeyer 2014;Möller 2003;Wittich, Watanabe, and Gagné 2012) with whom audiology and ophthalmology professionals do not interact on a daily basis, as confirmed by this study. The importance of identifying the needs of the deafblind population at the individual level has been reported (Dalby et al 2009;Dammeyer 2012). The identification of these needs also seems to be one of the greatest benefits of the assessments conducted by the national deaf blindness Expert Team, both from the perspective of persons directly affected by deafblindness and from local professionals who were responsible for providing tailored interventions.…”

“…Furthermore, deafblindness can have multiple causes (Dalby et al 2009;Dammeyer 2014;Möller 2003;Wittich, Watanabe, and Gagné 2012). Deafblindness presents a number of evident problems in daily life: difficulties with communication (Fletcher and Guthrie 2013;Hersh 2013;Möller 2003Möller , 2005Rönnåsen et al 2016), compromised activities of daily life, lack of independence (Fletcher and Guthrie 2013;Rönnåsen et al 2016), risk of isolation (Fletcher and Guthrie 2013;Hersh 2013;Möller 2003Möller , 2005, challenges with mobility (Dalby et al 2009;Fletcher and Guthrie 2013;Hersh 2013;Möller 2005;Rönnåsen et al 2016) and difficulty performing household chores (Fletcher and Guthrie 2013;Hersh 2013;Möller 2005;Rönnåsen et al 2016). Some syndromes resulting in deafblindness also affect other organs (Marshall et al 2007;Möller 2003;Pagon et al 1981), which requires multiple contacts with the healthcare and rehabilitation system (Anderzén-Carlsson 2015;Van Groenendael et al 2015).…”

One of society's most vulnerable groups? A systematically conducted literature review exploring the vulnerability of deafblind people

“…tactile sign language, visual sign language, deafblind manual or oral communication) and cultural background (Langer , Dalby et al . , Bodsworth et al . ) all impact on a person's experience of deafblindness.…”

“…However, variations in, inter alia, aetiology, age, age of onset, interval between impairment in each sense, cognitive function, primary communication method or language use (e.g. tactile sign language, visual sign language, deafblind manual or oral communication) and cultural background (Langer 2008, Dalby et al 2009, Bodsworth et al 2011) all impact on a person's experience of deafblindness. Such is the variation among deafblind people, that Smith (1993) argues that use of the single term 'deafblind' to describe the population as a whole is 'meaningless'.…”