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A survey of parents of children with cortical or cerebral visual impairment.

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?

Method

The survey was conducted using SurveyMonkey.com, a comprehensive data collection site. The 45 questions were broken up into four categories: (1) parents' suspicion of CVI, (2) diagnosis and information provided, (3) etiology and visual inventory, and (4) education and related services. Questions were either single answer or multiple choice with only one answer allowed or multiple answers allowed, depending on the data being collected. Some questions asked for further information if "not applicable" or "other" was the chosen answer. These responses had no boundaries.

A recruitment e-mail message was sent to four electronic bulletin boards for parents and one for professionals. A link to the survey was also posted on FamilyConnect, the web site for parents of the National Association of Parents of Children with Visual Impairments/American Foundation for the Blind (NAPVI/AFB). The survey was confidential unless a participant chose to leave an e-mail address.

PARTICIPANTS AND THEIR CHILDREN

A total of 212 people responded to the survey, including 80 parents. In this article, we present the responses of the 80 parents who completed the survey. The 80 parent participants came from 32 states, with the most responses being from Texas (n = 8); California and Massachusetts (n = 6); Illinois, New York, and Ohio (n = 5); and New Jersey (n = 4). The 80 children who were represented in the study, as reported by their parents, ranged in age and etiology. Two were less than a year old, 35 were aged 1-3, 24 were aged 4-7, 12 were aged 8-12, and 7 were aged 13-18. The parents reported that the primary etiology of CVI included hydrocephalus (15%), stroke (11%), hypoxia ischemia (10%), periventricular leukomalacia (12%), and traumatic brain injury (7%). One parent stated that prematurity was the primary cause of the child's CVI, and one parent reported that congenital rubella was the cause of the child's CVI. The majority of parents reported "other" (42%), specifying fungal meningitis, infantile spasms, schizencephaly, micorencephaly, brain bleeds, brain malformation, cerebral palsy, seizure disorder, or encephalitis as causes for their children's CVI. Seven parents reported that the primary cause of their children's CVI was unknown.

[FIGURE 1 OMITTED]

The type of concurrent disabilities in the children varied and included cerebral palsy, reading disability, math disability, writing disability, expressive language disability, receptive language disability, autism spectrum disorder, face blindness, hearing impairment, central auditory process disability, disfluency, and social pragmatics (see Figure 1). The majority of the parents, however, found these disabilities to be "not applicable."

Results

SUSPICION OF CVI AND A FORMAL DIAGNOSIS

Approximately 55% of the parents were the first to suspect that there was something wrong with their children's vision. The lack of eye contact (79%), a history or presence of neurological issues (59%), a delayed response to visual stimuli (57%), light gazing or a nonpurposeful gaze (44%), and unusual or unexpected visual behavior (44%) were the top items that raised the parents' suspicion of CVI. The next highest-ranked observations that raised suspicions of CVI were absent or atypical visual reflexes (32%), a normal or near-normal eye examination that did not explain the child's visual difficulties (30%), difficulty recognizing people by their faces (27%), difficulty with visually guided movement of the arm or hand (difficulty grasping an object accurately, 26%), and difficulty with complex visual scenes (difficulty finding a specific object among many that was not related to acuity, 26%).

When asked about their children's current visual acuity, 61% of the parents responded that they did not have a visual acuity measurement to date. The majority of the children who were given a measurement were found to have a visual acuity of 20/200 (15%), and the visual acuities of the rest fell between 20/20 and 20/160 (24%). Of these children, 10% have visual acuities of 20/70 or better. Furthermore, field losses are a major part of CVI, yet 74% of the parents responded that field losses were suspected but not assessed.

According to the parents, half the children who were diagnosed with CVI were given the diagnosis within their first year of life (n = 40). The other 50% were diagnosed between ages 1-3 (35%), 4-7 (9%), or 8-12 (5%), and one child was diagnosed between ages 13-18. The parents reported that an ophthalmologist (49%) was the first to diagnose CVI; followed by a teacher of students with visual impairments, who cannot diagnose but can suggest that the child should be evaluated by a medical professional (17%); a neurologist (16%); and the parents (10%), who diagnosed their children before they received an official diagnosis.

INFORMATION PROVIDED AT THE TIME OF DIAGNOSIS

The parents were asked how much information was given to them at the time their children were diagnosed, what type of information was given, and how valuable the information was to their understanding of CVI and how to proceed in getting the supports their children needed. Of the parents who were given information at the time of the diagnosis, 45% said that they were given very little information, 28% said that they were given some information, and 22% said that they were given no information. The information that was provided to the parents was most often reference literature (17.5%), published media (books and pamphlets, 12.5%), web site addresses (7.5%), professional journal articles (5%), and online courses (4%). The majority of parents found the information that they received to be somewhat helpful (39%), 12% found it to be very helpful, and 26% found it to be not helpful at all.

Approximately half the parents (51%) stated that no information was given to them beyond a diagnosis. The parents were then asked how much they had learned about CVI from a variety of professionals in the fields of medicine and education; 69% of the parents stated that their own research provided them with the necessary information on CVI (see Figure 2).

[FIGURE 2 OMITTED]

EDUCATION AND RELATED SERVICES

When the parents were asked to report on their children's current school placements, 27% stated their children were receiving services through early intervention or "birth to three" programs, 24% attended a local neighborhood school, 16% were enrolled in a special education school, 9% attended a regional special education program, and 6% did not attend a public program. The 17% who responded "other" stated that their children were enrolled in either a school for children who are visually impaired or a specialized preschool or were home schooled.

Of the children who were educated in a public school, the majority were in a special education classroom full time (21%). The rest were mainstreamed with pull-out services (n = 4), were mainstreamed with a one-to-one aide (n = 7), were in a mainstream classroom that had a classroom aide (n = 3), were in a resource room part of the day (n = 1), or received no supports in the mainstream classroom (n = 1). Thirteen parents answered this question with "other," specifying a combination of the foregoing placements.

Of the children who did not attend a public school, 31% were receiving early intervention services, 5% attended a state school for students with visual impairments, 5% attended a private school for children with visual impairments, and 4% were home schooled. Although 20% stated that this question was not applicable, their anecdotal responses indicated the all their children were receiving services in one of the foregoing placements.

The following services that the children with CVI were receiving, as reported by their parents, were occupational therapy (87%), physical therapy (84%), services of a teacher of students with visual impairments (72%), speech therapy (79%), orientation and mobility (O&M, 45%), early intervention (29%), adaptive physical education (26%), sensory integration (12%), community experience (10%), and vocational rehabilitation (5%); 2% received no services. Anecdotal responses regarding the services that the children received included only a consultation with an occupational therapist or a teacher of students with visual impairments, music therapy, play therapy, life skills in a special education classroom, hippotherapy, aquatic therapy, vision therapy, and feeding therapy.

DIFFICULTY GETTING SERVICES

When the parents were asked the level of difficulty they had obtaining appropriate accommodations or modifications, 20% reported that it was very difficult, 15% reported that it was moderately difficult, and 18% reported that it was not difficult. In addition, 35% reported that their children had not yet received services of any kind. The explanations of the 11% who stated that this question was not applicable included the following: "because of a low understanding of visual impairment, the appropriate services are not being received"; "my child is too young"; "my child is not in the public school setting"; and "we are still not getting appropriate accommodations."

The accommodations or modifications that the parents reported their children received included instruction in a small classroom (31%), an uncluttered work area (26%), a lighting accommodation (22%), O&M (34%), preferential seating (22%), large-print materials (25%), books on tapes or CDs (12%), a quiet learning area (15%), and real-life examples (9%). The parents also reported that 17% of the children used a personal or laptop computer, 19% used braille, 10% used a long cane, 7% used a scribe, 6% use text-to-speech software, and 7% had a sighted guide. The parents who answered "other" (21%) specified that their children received the following accommodations or modifications: a slant board, switches, and adaptive equipment. "No accommodations or modifications are received" was reported by 29% of the parents (see Figure 3).

The parents thought that the following services should be a part of their children's programs yet are not included: sensory integration (29%), O&M (24%), community experience (17%), a teacher of students with visual impairments (16%), adaptive physical education (11%), speech therapy (10%), occupational therapy (6%), physical therapy (2%), special education (3%), and vocational rehabilitation (3%) (see Figure 4). Forty-two percent thought that their children were receiving all the necessary services, and 17% answered anecdotally that their children needed more intensive services and that the amount (number of hours) of services needed to be increased. In an open-ended response, one parent stated that the child' s teacher of students with visual impairments was not trained in CVI and that vision services needed to be increased.

The expanded core curriculum (ECC) consists of nine unique educational needs for students with visual impairments. When asked about their children's access to services or supports for the ECC, 35% of the parents said that their children have access to assistive technology, 21% said that their children receive sensory efficiency instruction, 19% said that their children have social interaction instruction, 20% said that their children receive compensatory or functional academic skill instruction, 19% said that their children receive instruction in recreational and leisure activities, 20% said that their children receive instruction in independent living skills, 16% said that their children receive instruction in computer skills, 10% said that their children receive self-determination instruction, and 1% said that their children receive career education (see Figure 5).

[FIGURE 3 OMITTED]

Discussion and conclusion Although the results presented here were based on a convenience sample and cannot be generalized to other parents of children with CVI, the data provide a glimpse into the difficulties that this group of parents faced as they tried to get services and appropriate diagnoses for their children. Most of the parents were the first to suspect that there was a problem with their children's vision even though the majority of children had additional disabilities for which they were receiving some type of intervention. When they obtained a diagnosis of CVI, the majority of parents were given very little information by physicians and educators. The parents themselves had to complete the research to gain the knowledge they needed when they tried to obtain the necessary supports and interventions so their children would receive an appropriate education.

[FIGURE 4 OMITTED]

The greatest percentage of respondents (45%) had children aged 1-7 and thought that their children were receiving all the necessary services, but they may have thought so because their children were too young for school programs. In contrast, the majority of those whose children were old enough to be in school programs (55%) said they had difficulty obtaining services or obtaining the appropriate accommodations or modifications for their children. These parents reported that the primary reason they had difficulty obtaining an appropriate education for their children was physicians' and teachers' lack of understanding, knowledge, and training with regard to CVI. Comments such as "the child sees well enough"; "the child does not have a true visual impairment because he [or she] has a normal eye examination"; or "CVI will resolve, and your child will no longer be considered visually impaired" were the three main misunderstandings that the parents reported with regard to their children's CVI.

The responses from the parents raise some important questions about how families and children with CVI are supported. First, why are parents put in the position of educating ophthalmologists, neurologists, and educators about CVI? Second, why do ophthalmologists not suspect or diagnose CVI earlier? Last, do teachers of students with visual impairments and other members of the educational team (such as physical therapists and occupational therapists) need more training in appropriate interventions for these children?

Another issue raised by the parents in this survey was their access to appropriate educational supports for their children with CVI. The results showed that many, but not all, children with CVI have concurrent disabilities. Of those who do, their visual impairments are often disregarded because of other disabilities, or CVI is not believed to be their primary disability. In addition, many parents reported difficulty obtaining the proper services for their children with CVI. For example, more than 29% of the parents of school-aged children with CVI stated that their children do not receive any accommodations or modifications in their educational programs (see Figures 4 and 5).

[FIGURE 5 OMITTED]

Finally, the results show that the parents perceived that the misunderstanding among professionals that CVI will fully resolve and that the children will no longer be considered visually impaired is again due to the lack of knowledge and understanding of the disability in the field of visual impairment. The literature shows that nearly all children with CVI will demonstrate improved vision, but that children should still be considered to have CVI if they meet the parameters of the definition (Roman et al., 2010) and thus be given all the supports, modifications, and accommodations that are necessary for the children to learn to the best of their ability.

In conclusion, it is apparent that there is much more to be done before parents of children with CVI receive a correct diagnosis in a timely manner and receive the appropriate educational supports that their children need to obtain an appropriate education. CVI is a spectrum disability; each child must be looked at independently and within his or her own manifestations of the disability (Dutton et al., 2006). Best practices for teaching these children need to be further devised; confirmed; and, above all, implemented. Furthermore, children with CVI need to be considered visually impaired by all who work with them, regardless of their visual acuities or other concomitant disabilities, and the supports given should be based on their individual needs in collaboration with their parents and other family members.

References

Cohen-Maitre, S., & Haerich, P. (2005). Visual attention to movement and color in children with cortical visual impairment. Journal of Visual Impairment & Blindness, 99, 389-402.

Dennison, E., & Lueck, A. (Eds.). (2006). Proceedings: Summit on Cerebral/Cortical Visual Impairment. New York: AFB Press.

Dutton, G. N. (2003). Cognitive vision, its disorders and differential diagnosis in adults and children: Knowing where and what things are. Eye, 17, 289-304.

Dutton, G. N., Saaed, A., Fahad, B., Fraser, R., McDaid, G., McDade, J., MacKintosh, A., Rane, T., & Spowart, K. (2004). Association of binocular lower visual field impairment, impaired, simultaneous perception, disordered visually guided motion and inaccurate saccades in children with cerebral visual dysfunction--A retrospective observational study. Eye, 18, 27-34.

Dutton, G. N., McKillop, E. C. A., & Saidkasimova, S. (2006). Visual problems as a result of brain damage in children. British Journal of Opthalmology, 90, 932-933.

Ek, U., Fellenius, K., & Jacobson, L. (2003). Reading acquisition, cognitive and visual development, and self-esteem in four children with cerebral visual impairment. Journal of Visual Impairment & Blindness, 97, 741-754.

Flanagan, N. M., Jackson, A. J., & Hill, A. E. (2003). Visual impairment in childhood: Insights from a community-based survey. Child: Care, Health and Development, 29, 493-499.

Good, W. V. (2001). Development of a quantitative method to measure vision in children with chronic cortical visual impairment. Transactions of the American Ophthalmological Society, 99, 253-269.

Hyvarinen, L. (2009). Assessment of visual processing disorders in children with other disabilities. Neuro-Ophthalmology, 33, 158-161.

Jacobson, L. (2000). Periventricular leukomalacia: An important cause of visual and ocular motility dysfunction in children. Survey of Ophthalmology, 45, 1-13.

Lueck, A. H. (Ed.). (2004). Functional vision: A practitioner's guide to evaluation and intervention. New York: AFB Press.

Lueck, A. H., Hart, J., & Dornbusch, H. (1999). The effects of training on a young child with CVI: An exploratory study. Journal of Visual Impairment & Blindness, 93, 778-793.

Malkowicz, D. E., Myers, G., & Leisman, G. (2006). Rehabilitation of children with cortical visual impairment. International Journal of Neuroscience, 116, 1015-1033.

Matsuba, C., & Jan, J. (2006). Long-term outcome of children with cortical visual impairment. Developmental Medicine & Child Neurology, 48, 508-512.

Morse, M. (1999). Cortical visual impairment: Some words of caution. RE:view, 31, 21-26.

Roman, C., Baker-Bobles, L., Dutton, G., Luiselli, T. E., Flener, B., Jan, J. E., Lantzy, A., Matsuba, C., Mayer, D. L., Newcomb, S., & Nielsen, A. S. (2010). Statement on cortical visual impairment. Retrieved from http://www.afb.org/Section.asp?SsectionID=93&TopicID=417&DocumentID=4929

Salati, R., Borgatti, R., Giammari, G., & Jacobson, L. (2002). Oculomotor dysfunction in cerebral visual impairment following perinatal hypoxia. Developmental Medicine & Child Neurology, 44, 542-550.

Shabbott, B. A., & Sainburg, R. L. (2010). Learning a visuomotor rotation: Simultaneous visual and proprioceptive information is crucial for visuomotor remapping. Experimental Brain Research. Retrieved from http://www.columbiampl.org/meetings/shabbott2010.pdf

Bernadette Jackel, B.S., member of FOVI (Focus on Visual Impairments), monitor of the NAPVI/AFB FamilyConnect CVI page, a focus group coordinator for NAPVI/AFB, cofounder of CVIBeyondtheBabyDays@yahoogroups.com, presenter at the 2009 NE AER, and board member of the Pilot House, a special needs foundation; mailing address: 985 Powder Horn Lane, Fairfield, CT 06824; e-mail: <CVIAwareness@ aol.com>. Michelle Wilson, member of FOV1, monitor of the NAPVI/AFB FamilyConnect CVI page, focus group coordinator for NAPVI/AFB, cofounder of CVIBeyondtheBabyDays@ yahoogroups.com, and a presenter at the CVI Summit; mailing address: P.O. Box 28, Hamilton, OH 45012, e-mail: <mlwilsonl@ fuse.net>. Elizabeth Hartmann, Ph.D., postdoctoral fellow, Boston College and CAST; mailing address: 40 Harvard Mills Square, Suite 3, Wakefield, MA 01880, e-mail: <lizhartmann@gmail.com>. Address all correspondence to Bernadette Jackel.

Bernadette Jackel and Michelle Wilson are parents of children with CVI. Elizabeth Hartmann is supported by a postdoctoral fellowship from the Office of Special Education Programs. The authors acknowledge the contribution to the study by Kathleen Appleby, Janice Appleseed, Julie Bernas-Pierce, Gordon Dutton, Amanda Hall-Lueck, Joan Katz, Mary Morse, Marilyn Walpole; the American Foundation for the Blind, American Printing House for the Blind, Association for Education and Rehabilitation of the Blind, and National Association of Parents of Children with Visual Impairments; and the electronic bulletin boards CVIBeyondthebabydays, CorticalVisionImpairment, BVI, and PVL.
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Author:Jackel, Bernadette; Wilson, Michelle; Hartmann, Elizabeth
Publication:Journal of Visual Impairment & Blindness
Article Type:Report
Geographic Code:1USA
Date:Oct 1, 2010
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