1999 Conference Proceedings

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"BARRIERS TO LOW VISION CARE: WHY SOME VISUALLY IMPAIRED INDIVIDUALS NEVER LEARN OF THE TECHNOLOGIES AVAILABLE TO THEM"

Gretchen B. Van Boemel, Ph.D.
Doheny Eye Institute
1450 San Pablo Street
Los Angeles, CA 90033
(323) 442-7148 office
(323) 442-6440 FAX
gvanboemel@apc.net

Although there are many services and forms of technology available to enhance the lives of individuals with low vision, many individuals do not ever become aware of this information (Fitzgerald, Ebert, & Chambers, 1987). Many of these services and devices for the blind and visually impaired have been shown to be beneficial (Raasch, Leat, Kleinstein, Bullimore, & Cutter, 1997), and many people are able to live independently as a result of using these services and devices (Cate, Baker & Gilbert, 1995).

Most individuals with low vision can be trained to successfully perform even complicated activities of daily living with the use of adaptive low vision devices (Jeffres & Mackay, 1997; Raasch et al, 1997, Stoll, Sarma, & Hoeft, 1995). Unfortunately, individuals with vision loss who have not been trained on the use of adaptive technologies may be forced to ask others to help them with their day-to-day living needs. Lack of knowledge and dependence on others results in poor functioning and frequently poor health and depression in those with low vision (Fitzgerald et al, 1987).

Frequently, eye care professionals, visually impaired individuals, and their families do not discuss the benefits of utilizing services and technologies for the blind and visually impaired (Greenblatt, 1988; Van Boemel, & Fowler, 1994; Van Boemel, Lee, & Tansman, 1998). What barriers exist that may result in the person with low vision not hearing of or accessing those services and devices that might be of assistance to them? The purpose of this paper is to discuss three areas where barriers might exist that may result in the individual with visual impairment not being able to access low vision services and technologies.

The healthcare setting. The first barrier to low vision care is in the eye care professional's office. Ophthalmologists and optometrists tend not to discuss issues of low vision with patients with vision loss (Greenblatt, 1988; Van Boemel, & Fowler, 1994). The eye care professional may not have sufficient knowledge of what is available, may not have sufficient time to discuss low vision services and technologies with each patient, may not feel that discussing such issues is within the scope of his or her practice, may not feel that the patient wants the information, or may feel that the patient will not follow up on the advice given (Greenblatt, 1988; Van Boemel, & Fowler, 1994). The ophthalmologist may feel that he or she has failed as a health care practitioner if he or she is unable to "cure" the patient's vision problem and restore the patient's sight (Parrish, 1988). Finally, the eye care professional may believe that the person with low vision has already obtained all of the information on low vision services and technologies that are available and therefore does not need to hear about it again.

The person with low vision. The second barrier to low vision care may reside with the low vision person him or herself. The individual may care not understand what constitutes low vision and may not know when to access services for the blind and visually impaired (Van Boemel, & Fowler, 1994). Variability in visual acuity may result in poor acceptance of visual complications by individuals with low vision (Wortman, & Silver, 1989). Moreover, the individual may continue to believe that the next surgery will result in recovered vision (Van Boemel et al, 1998). The person with low vision may be in serious denial about the magnitude of the vision loss, and may feel as if he or she can "get by" with the vision that is retained (Van Boemel et al, 1998).

If a family member is not supportive, or worse abusive, the person with low vision will not ask for help to obtain low vision services and devices. This is particularly true if the individual with low vision relies on the normally sighted family member for such things as transportation (Van Boemel et al, 1998). If an individual with vision loss has a visually impaired family member (as is often seen in the case of diabetic eye disease), then the newly visually impaired individual may be influenced by the other family member's acceptance of vision loss (Van Boemel et al, 1998). If the family member refused to use low vision care, then it is likely that the newly blind individual will not utilize low vision services either.

The family unit. Family dynamics may influence the behavior of an individual with low vision and how low vision care, services, and technologies are accessed (Van Boemel et al, 1998). Family members may not understand what "low vision" means, and may feel that the visually impaired family member is faking vision loss for such reasons as to get out of doing unpleasant tasks around the home (Van Boemel et al, 1998). Those with vision loss frequently are able to see some things quite easily, but are unable to see other things. This variability in visual behavior can result in the family members' misunderstanding of vision loss.

Moreover, if support is not freely given by the family members, the individual with low vision may not ask for assistance, as the individual may not want to be perceived as a "burden" on the family (Van Boemel et al, 1998). The visually normal family member may try to make the visually impaired family member feel guilty about asking for assistance "all the time," thus reducing the amount of support that is given. The family may start to exclude the visually impaired person from family activities, thus insuring that the individual with low vision will not discuss vision loss with the family. Issues of control may surface within the family structure, and this may be particularly problematic if the visually impaired person is female (Van Boemel, & Lee, in press). The normally sighted male may not provide any support, and may not pay for any devices or technologies that may assist the visually impaired female unless true benefit from using the device is demonstrated.

These are but a few of the potential barriers that individuals with low vision face when trying to access low vision care, services, and technologies. Lack of communication between the physician, patient, and family exacerbate this problem. Insufficient knowledge by the eye care professional about what is available for the visually impaired further worsens this problem. Finally, poor family dynamics results in those individuals in need of the services not feelings as if they can ask for help from family or friends. In such instances, individuals with low vision will remain dependent on others which can result in poor functioning, ill health, and depression in those with low vision. These and other barriers and possible solutions to reducing these barriers will be discussed.

References

Cate, Y, Baker, SS, & Gilbert, MP: Occupational therapy and the person with diabetes and vision impairment, Am J Occup Ther 49:905-11, 1995

Fitzgerald, RG, Ebert, JN, & Chambers, M: Reactions to blindness: A four-year follow-up study, Percept Mot Skills 64:363-78, 1987

Greenblatt, SL: Physicians and chronic impairment: a study of ophthalmologists' interactions with visually impaired and blind patients, Soc Sci Med, 26:393-99, 1988

Jeffres, C, & Mackay, AT: Improving stoma management in the low vision patient, J Wound Ostomy Continence Nurs 24:302-10, 1997

Parrish, RK: How we deal with our own feelings about blindness, Arch Ophthalmol, 106:31-33, 1988

Raasch, TW, Leat, SJ, Kleinstein, RN, Bullimore, MA, & Cutter, GR: Evaluating the value of low vision care, J Am Optom Assoc 68:287-295, 1997

Stoll, S, Sarma, S, & Hoeft, WW: Low vision aids training in the home, J Am Optom Assoc 66:32-8, 1995

Van Boemel, GB, & Fowler, LM: Education and Outreach -- Extending SSI benefits to the blind, newly blind aged, and visually disabled. (Contract number 14-S-10041-9-01). Social Security Administration, Department of Health and Human Services. Baltimore, MD, 1994.

Van Boemel, GB, & Lee, PP: Adherence to traditional sex roles as a hidden barrier in preventable eye disease, Journal of Visual Impairment and Blindness, (in press)

Van Boemel, GB, Lee, PP, & Tansman, MS: When family support isn't: dynamics in households of low vision diabetics, Invest Ophthalmol Vis Sci 39 (Suppl.), 1998

Wortman, CB, & Silver, RC: The myths of coping with loss, J Consult Clin Psychol 57:349-57, 1989


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