Academic journal article Journal of Visual Impairment & Blindness

Physical and Psychological Health in Persons with Deafblindness That Is Due to Usher Syndrome Type II

Academic journal article Journal of Visual Impairment & Blindness

Physical and Psychological Health in Persons with Deafblindness That Is Due to Usher Syndrome Type II

Article excerpt

Research on persons with disabilities and their health conditions is challenging, because persons with disabilities differ in their health conditions and other characteristics, with great variability within a specific disorder. Although knowledge of disability and comorbidity is scarce and fragmented, some reports have indicated that people with disabilities have an increased risk of poor health (Iezzoni, 2009; Marge & Pasick, 1988; Verbrugge, Lepkowski, & Imanaka, 1989). In this article, the focus is on deafblindness and Usher syndrome Type II. Only a few studies have discussed the importance of addressing deafblindness and comorbidity (Millan et al., 2011; K. Moller, 2008; Ronnberg & Borg, 2001). Milkan et al. (2011) stressed the importance of a public health perspective on individuals with deafblindness and Usher syndrome. Comorbidity has an impact on an individual's everyday life situations. Some comorbidity, such as a combination of a visual and hearing impairment, affects an individual's management of health care, the promotion of good health, and the performance of best evidence-based practice. Usher syndrome has so far not been associated with additional disorders than hearing impairments, visual impairments, and balance.

Deafblindness is a heterogeneous disorder, and a person with this condition can have different degrees of hearing and vision loss, the combination of which may have an additional or synergistic mode of action (C. Moller, 2003). The Nordic definition of deafblindness was accepted in 2007: "Deafblindness is a distinct disability. Deafblindness is a combined vision and hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is required to facilitate specific services, environmental alterations and/or technology" (Nordens Valfardscenter, n.d.).

Deafblindness increases a person's vulnerability, since the lack of basic information occurs in the interaction between the person with deafblindness and the environment, which may result in isolation and social exclusion. The result is often constraints on daily activities and environmental risks, which can be difficult to identify for persons with deafblindness (K. Moller, 2008). An important aspect of the lack of basic information between the person with deafblindness and the environment is ontological security (Danermark & Moller, 2008). Furthermore, people with deafblindness face challenges of trust and predictability, since they largely rely on other people to receive information. Schneider (2006) found restrictions in participation in relation to the environment, often caused by the lack of information on the effects of being deafblind.

Few studies have reported psychosocial consequences of deafblindness, such as anxiety and depression (Brennan & Bally, 2007; Capella-McDonnall, 2005; Chia et al., 2006). Harada et al. (2008) found a considerably higher risk of depression and perceived poor health among men and women aged 65 and older with acquired nonsyndromic visual and hearing impairments. Although their target group was different from that of our study, it is interesting to note that their results indicated a considerably higher risk of poor health among persons with deafblindness than among persons without deafblindness. Being complementary, hearing and vision enhance each other (C. Moller, 2003). Early functional and medical diagnosis is crucial, since the lack of it may result in psychosocial implications and difficulties in coping and adapting (Miner, 1995, 1997; Schneider, 2006).

Usher syndrome (USH) is the most common cause of deafblindness in adults of working age worldwide (C. Moller, 2003). It is an autosomal recessive disorder that affects hearing, vision, and vestibular function (balance) (C. Moller, 2003; Pennings, 2004; Sadeghi, 2005). The prevalence of USH in Sweden is estimated at 3.3 per 100,000 people (Sadeghi, Kimberling, Tranebjoerg, & Moller, 2004). …

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