Academic journal article Journal of Visual Impairment & Blindness

Development and Psychometric Properties of a Standardized Assessment for Adults Who Are Deaf-Blind

Academic journal article Journal of Visual Impairment & Blindness

Development and Psychometric Properties of a Standardized Assessment for Adults Who Are Deaf-Blind

Article excerpt

Abstract: The internal consistency and validity of the interRAI Community Health Assessment and Deafblind Supplement were tested with 182 persons with deaf-blindness. All subscales demonstrated good to excellent internal consistency, and expected associations provided evidence of convergent validity. This instrument can facilitate standardized service planning for persons with deaf-blindness.

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Deaf-blindness refers to a spectrum of dual sensory impairments in vision and hearing. Individuals who are deaf-blind may have some remaining vision or hearing but have substantial impairment that affects their ability to function and carry out daily activities. There is great variation in these persons' hearing, visual abilities, and functional skills (Ronnberg, Samuelsson, & Borg, 2002).

In the United States, the prevalence of self-reported concurrent visual and hearing impairments is approximately 3.3% overall and increases to 16.6% among those aged 80 and older (Caban, Lee, Gomez-Marin, Lam, & Zheng, 2005). Usher syndrome is a genetic disorder that is characterized by congenital hearing loss and the later onset of retinitis pigmentosa, which leads to visual impairment. Estimates of the prevalence of Usher syndrome range from 3.3 (Sadeghi, Kimberling, Tranebjoerg, & Moller, 2004) to 6.2 per 100,000 individuals (Hope, Bundey, Proops, & Fielder, 1997; Spandau & Rohrschneider, 2002), which makes this syndrome the most common cause of deaf-blindness worldwide (Spandau & Rohrschneider, 2002).

Estimates of the prevalence of Usher syndrome in Canada are not available. However, previous surveys estimated that between 3,000 (Watters, Owen, & Munroe, 2004) and 15,000 Canadians are deaf-blind (Canadian Council on Social Development, 2004). These estimates, which include both children and adults, are likely to be conservative, given that elderly people (aged 65 and older) have typically been underrepresented in surveys (Watters et al., 2004). The fact that deaf-blindness can be acquired as one ages indicates that the prevalence will continue to increase over time in Canada and developed countries whose populations are aging.

This is the first of two articles. This article describes the development and pilot testing of a standardized instrument for persons who are deaf-blind in the province of Ontario, Canada. The second article describes the demographic, functional, and clinical characteristics of the participants in the pilot study.

Method

DEVELOPMENT OF THE INSTRUMENT

In Ontario, the Ministry of Health and Long-Term Care has mandated interRAI assessment instruments in complex continuing care, home care, and in-patient psychiatry, interRAI () is an international nonprofit collaborative network of researchers and clinicians who design comprehensive, standardized assessment instruments to evaluate the needs of persons for all social and health service settings (Hirdes et al., 1999). The suite of interRAI tools forms an integrated health information system, and thus compatibility with existing interRAI tools was a key objective during the development of the instrument described in this article.

The interRAI Community Health Assessment (interRAI CHA) (Morris et al., 2006) was used as the starting point for the development of the instrument. It is a modular instrument used with individuals in the community who may be experiencing functional decline (such as difficulty with dressing, bathing, and mobility), but are not receiving formal rehabilitation services. The reliability of the core items of the assessment has been tested extensively (Hirdes et al., 2002; Mor, 2004; Morris, Carpenter, Berg, & Jones, 2000).

A new module, the Deafblind Supplement (Hirdes et al., 2007), for use with the interRAI CHA, was developed with extensive feedback from key stakeholders, including service providers, individuals with deaf-blindness, intervenors, policy makers, and researchers. …

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