Academic journal article Journal of Visual Impairment & Blindness

A Survey of Parents of Children with Cortical or Cerebral Visual Impairment

Academic journal article Journal of Visual Impairment & Blindness

A Survey of Parents of Children with Cortical or Cerebral Visual Impairment

Article excerpt

Abstract: This article summarizes the results of a survey of 80 parents of children with cortical or cerebral visual impairment (CVI) regarding how a CV! diagnosis is received and supports that are provided after the diagnosis, the educational supports received by children with CVI, and the parents' perceptions of the supports that they and their children receive.

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Cortical or cerebral visual impairment (CVI) can result when the visual pathways and visual processing areas of the brain have been damaged (Dutton, McKillop, & Saidkasimova, 2006; Morse, 1999; Salati, Borgatti, Giammari, & Jacobson, 2002). Essentially, the eyes are capable of taking a clear picture of the environment, but the brain has trouble interpreting this picture. Children with CVI may have difficulty finding an object among other objects, viewing in the distance, orienting themselves in space, going from grass to pavement or other changes in surface, and copying letters for writing; have visual fatigue; and be unable to use auditory and visual modes together (McKillop et al., 2006).

CVI has a number of etiologies. Perinatal hypoxic ischemic encephalopathy, postnatal anoxia, periventricular leukomalacia, and infection (TORCH viruses) frequently result in CVI (Cohen-Maitre & Haerich, 2005; Flanagan, Jackson, & Hill, 2003; Malkowicz, Myers, & Leisman, 2006; Dutton et al., 2006). In a study of 76 children who were diagnosed with visual impairments in the European Union, Flanagan et al. (2003) found that CVI was the cause of visual impairment in nearly half the children. In addition, most children with CVI have other neurological sequelae, including cerebral palsy and hearing impairment, which complicates their rehabilitation and education (Flanagan et al., 2003; Good, 2001; Malkowicz et al., 2006). Thus, a team approach often. works best when educating children with CVI (Flanagan et al., 2003; Lueck, Hart, & Dornbusch, 1999).

Rehabilitation of children with CVI is critical. Early intervention has been shown to improve visual response in the vast majority of children with CVI (Dennison & Lueck, 2006; Good, 2001; Matsuba & Jan, 2006). The most effective rehabilitation occurs when the parents and other family members are all involved in the rehabilitation program (Dutton, 2003; Hyvarinen, 2009; Lueck, 2004; Lueck et al., 1999). Physicians need to explain the diagnosis of CVI clearly to the parents, the impact of CVI, and how the parents can help. In addition, physicians should refer the parents to early intervention for the children's visual impairments, so that the parents can learn on an ongoing basis how best to help their children's vision develop (Lueck et al., 1999).

The extant research has identified interventions that will help parents and educators elicit improved visual and educational outcomes. For example, CohenMaitre and Haerich (2005) and Shabbott and Sainburg (2010) found that the most important factor in obtaining an improved visual response in children with CVI is motion, particularly the motion of a colored object. Others have found that children with CVI benefit from access to different modes of literacy (Dutton et al., 2004; Dutton et al., 2006). Some children require large print; some even prefer braille, even though they have normal acuity (Ek, Fellenius, & Jacobson, 2003; Jacobson, 2000); and others benefit from text-to-speech technology.

This article summarizes the results of a survey that was conducted to gather information on CVI. With the knowledge of our personal experiences with CVI and information obtained from speaking with other parents and professionals in the field, the survey was designed with these three questions in mind: How do parents receive their children's diagnosis of CVI, and what supports are provided upon the diagnosis? What educational supports are children with CVI receiving? and What do the parents of children with CVI feel about the supports that they and their children receive? …

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