The Psychosocial Consequences of Vision Loss

II.THE PRIMARY EYE CARE PROFESSIONAL’S ROLE IN PATIENT ADJUSTMENT

A.Breaking the News

The most important discussion an eye care professional may ever have with a patient is breaking the news that the patient’s vision loss is permanent and uncorrectable. A frank and honest discussion of the subject is very important. Initiating the discussion regarding vision loss and low vision rehabilitation with a question about reading ability, driving, or other daily living activities should both decrease the anxiety and increase the comfort of both the patient and the physician. The eye care professional may want to conduct this conversation early in the disease process when vision is only moderately affected, such as vision loss of 20/60 in the better eye after correction. Waiting until the person is legally blind or profoundly visually impaired may result in poorer rehabilitation outcomes. A referral to the low-vision specialist when vision is only moderately affected should result in tremendous satisfaction on the part of the patient, as these individuals have the easiest vision to improve. The initial referral to the low-vision ophthalmologist or optometrist when successful fitting is possible will contribute to a good patient/practitioner relationship between the two of them. The individual with low vision can start to get used to adaptive devices such as high plus readers in the 6– 10 diopter range. When lower-powered readers and magnifiers no longer work successfully and the individual needs strengths in the 12– 20 diopter range, the focal distance needed will not be as foreign to the individual and adjustment to and utilization of such devices will be much greater. Adjustment to vision loss may be more successful if the individual has been able to make both psychological and daily living skill adjustments on an incremental basis (5). Moreover, an early referral may reduce the patient’s sense of anger toward us. Waiting until the patient is legally blind in both eyes results in many years of missed opportunities and much frustration on the part of the patient.

In addition to discussing problems of daily living, the initial discussion should include a full description of AMD, its visual prognosis and any treatment options that may be available, a definition of low vision and legal blindness, and an opportunity for the patient and his/her family to ask questions. This should help the patient better understand his/her disease, reduce any unrealistic hopes for a cure the patient or the family may still harbor, and start the patient on the road to recovery. It will legitimize the concerns the person with AMD may have about vision loss, while at the same time dispelling some of the myths and misconceptions the person or his/her family has about vision loss. It may also reduce the fear the patient may have about becoming totally blind from AMD. Referrals to other professionals if necessary (such as psychologists when coping strategies are limited or orientation and mobility specialists when vision loss is profound and safety is an issue) should complete the conversation. This will introduce the concept of low-vision rehabilitation to the patient and his/her family and should reduce frustration within the individual and the family unit if done appropriately and in a timely manner. Low-vision rehabilitation has been shown to be effective in both promoting adjustment to vision loss and enhancing daily living abilities in those with vision loss (6–9), providing a further reason to approach this subject with our patients.

Certainly we cannot address every issue surrounding vision loss in the initial conversation but we can start the dialog. Much of the discussion surrounding vision loss includes the more psychologically based aspects of vision loss. This is an area that many of

us are uncomfortable with or feel is outside our scope of practice (10). Our understanding of the psychosocial issues associated with vision loss and our knowledge of the resources available to those with vision loss will assist us in these difficult conversations. By providing this in-depth conversation to our patients with AMD, we will reduce much of the patient’s anxiety and will eliminate their “having to find things out on their own.” This should reduce their need to “doctor shop” as full disclosure will result in their believing that they have been fully cared for by us. If we do not address these issues within the clinical setting, we are implying that there is, in fact, nothing more that can be done and the individual must do everything on his or her own to cope with vision loss. The elderly person with insufficient information about low-vision rehabilitation may fall prey to those within the eye care community who are not fully reputable or ethical. (I have seen very unrealistic advertisements suggesting that 80-year-olds who are legally blind should still be able to drive with the right adaptive devices. These devices cost about $3000.) Reassurance from the eye care professional that he or she will always be available for consultation reduces the patient’s fear of physician abandonment. Even a little encouragement and information from a health care professional will have tremendous benefits for our patients (11). Moreover, many older adults prefer to have their health care decisions made for them by a physician (12). This decision-making preference makes the initial discussion of low-vision rehabilitation even more important for the older person with low vision, as that individual may not seek rehabilitative services without the input of the primary eye care professional.

Unfortunately, we may underestimate the effects vision loss has on our patients (13). We must be careful not to tell our patients that their vision problems or situation as a result of their vision problems could be worse. These types of statements usually result in the patient feeling resentful of us. They may feel misunderstood or minimalized. It also reduces the person’s willingness to ask questions, as the patient may now feel as if his/her “insignificant” vision problem should not warrant a lengthy discussion from the eye care professional. Assuring our patients that they will not go totally blind from macular degeneration and then giving them the opportunity to ask questions is more beneficial than telling them not to worry about their vision problems.

Moreover, as practitioners we do not want to encourage self-blame. For example, the “if only I had quit smoking I would not have developed macular degeneration” scenario does not improve the possibility of rehabilitation. To reduce self-blame, I tell my patients that almost everyone will develop macular degeneration if he lives long enough. This suggestion helps the individual realize that macular degeneration is a “natural” part of the aging process, and since they would not blame themselves for developing wrinkles, they should not blame themselves for macular degeneration.

We need to be mindful that many patients will not be “ready” for either a discussion about low vision or a referral to a low-vision specialist. This is a perfectly normal reaction to devastating news. If this is the case, a follow-up appointment about 2 months after the initial conversation may be necessary. Two months usually is enough time to result in a change of heart and a willingness to accept a referral. Subsequent yearly or half-yearly follow-up visits help maintain a relationship between the patient and the low-vision specialist.

B.Understanding Vision Loss

Probably the most difficult challenge facing those of us within the field of ophthalmology is ensuring that our patients and their families understand the meaning of vision loss. Most individuals think of vision as being dichotomous—either perfect 20/20 vision or “no light

perception” vision. Very few individuals are aware that visual acuity is actually on a continuum, ranging from 20/20 to no light perception. Helping the patient and the family understand the concept of vision as being on a continuum will help us work more effectively with them. Many family members do not fully understand the meaning of low vision and as a result the family members may not know what to expect from their loved ones with low vision (12). Family members may feel that the person with low vision is “faking” symptoms to get out of doing unpleasant chores around the home. Explaining, fully, to both the patient and his/her family that vision may fluctuate, that under certain conditions the person’s vision will appear better, and that high-contrast objects will be easier for the individual with poor vision to see will help eliminate friction within the family unit. The ophthalmologist’s explanation of this to the family legitimizes the experiences of those with low vision, thus making it easier for the individual with low vision to interact with his/her family.

C.The “Blindness” Word

Along the same vein, the word “blindness” may produce excessive anxiety that could be eliminated if the words “low vision” were used. Most individuals do not understand the meaning of the term “legal blindness” and hear only the word “blindness,” since most individuals are familiar with that term. If we do not provide information on the concept of legal blindness, then much of the time spent during the first visit with the low-vision specialist may consist of them explaining the term legal blindness to our patients. Legal blindness is an important classification as it means that the individual with vision loss is eligible for special services such as state and federal paid vision rehabilitation, income tax deductions, and no-cost “411” service, to name a few. However, if a patient hears only the word “blindness,” we have increased his or her anxiety significantly, as the individual may think that he/she will be going totally blind in the very near future. By using the term low vision, we will reduce our patients’ anxiety about total vision loss as the ultimate outcome of macular degeneration. When a person does become legally blind, we should discuss this information openly with our patients. We need to make sure that each patient obtains all of the benefits to which he or she is entitled. We must make sure that we have sufficient time to spend with our patients when this discussion becomes necessary. Rescheduling the discussion to a later date when necessary ensures that we have enough time to fully discuss the issue with our patients and their families.

III.PSYCHOLOGICAL REACTIONS TO VISION LOSS

Aging and vision loss can result in feelings of change and loss. These feelings of loss can range from loss of a spouse to loss of a career. The person may feel that he/she is living longer but not better or may feel fearful of having to relocate to an assisted-living facility

(5). This section will review several areas of concern to those who are both aged and visually impaired.

A.Losing Independence, Privacy, and Self-Worth

The loss of independence and privacy can be very debilitating to those who are elderly. These losses can result in the individual becoming depressed and less likely to seek

rehabilitative care, thus further increasing isolation and dependence on others (14). For those who cannot see adequately and who have not undergone daily living skills training, the level of independence that can be successfully exhibited is minimal. The individual cannot drive, cook, or read mail, and often cannot perform hygienic activities or maintain a household on his/her own. This results in the individual having to seek assistance from family members, friends, or paid attendants. Those with macular degeneration and low vision may not seek assistance from others, as this may signal impending decline and death. Certainly, the mere presence of these helping individuals implies that the person with low vision can no longer live or function independently. Moreover, the individual has now lost all of his/her privacy. This comes in the form of having others read personal mail and assist in keeping financial records. In some instances, it may include assistance with hygiene as well. Unfortunately, the absence of these helpful individuals can mean the person with low vision is living in squalid or unsafe conditions.

Individuals who have low vision and who can no longer live independently may choose to live in assisted-living facilities if financial resources are available. This further suggests a loss of independence, as the person is no longer able to inhabit the home he/she has lived in for many years. The loss of a home and a move to a retirement home or as- sisted-living facility may imply eminent death to the individual with low vision (5). Vision loss is frequently cited as the reason for moving from the family home to an assisted-living facility (5). The move to a retirement community can have deleterious effects on an individual’s health (5). The person may feel that he is now at the “end of the line” and that death is imminent. Therefore, it is the goal of many low-vision specialists to keep those with low vision in their own homes for as long as possible.

Vision loss may also lead to feelings of limited self-worth (1). Individuals currently affected by AMD report feeling useful primarily while working (5). These individuals may volunteer their time after retirement and may be as busy as they were prior to retirement. However, if the person is plagued with vision loss, he/she may not be able to continue to pursue retirement activities. If the person is not adaptable and does not know how to modify his/her life to make accommodations for the vision loss, the likelihood of continuing with the old regime is unlikely. The inability to work or pursue retirement activities may lead to feelings of limited self-worth. The person’s role within the family may change, further affecting the sense of self-worth. Feelings of self-worth are highly desirable and lead to increased well-being and improved psychological functioning. Those with reduced feelings of self-worth are at risk for such things as despair and depression (5).

B.Depression, Isolation, and Loneliness

Depression, isolation, and loneliness are a very unfortunate, but real, part of aging. These conditions may be as a result of losing family and friends to death, or may be due to disabling features of aging, such as vision loss or other chronic or disabling conditions that keep the individual home-bound. Vision loss, in and of itself, can cause psychopathological symptoms such as anxiety, adjustment disorder, major depression, suicidal ideation and attempt, and phobia (15–21). Psychological symptoms may range from mild problems of maladjustment to significant problems of a psychopathological nature. Those with minor adjustment problems usually regain psychological normalcy after adjustment to vision loss occurs (16). Symptoms may include feelings of dependence on others or frustration at having to ask for assistance to help with things that were done with ease previously. The individual who is adjusting poorly may also have a sense of diminished well-being. This may

be further exacerbated if the individual lives in a relatively low-vision-unfriendly apartment (one with poor lighting and numerous stairs for example) (19,20). Treatment should include daily living skill enhancement that will likely be sufficient to help the individual adjust better to the vision loss.

For those at risk for more severe psychological problems, the presence of permanent vision loss may result in chronic mental health problems. Individuals who are at risk should be referred to appropriate professionals as soon as symptoms start to appear (18). In those who are depressed, symptoms of feeling blue, feelings of lethargy, and poor sleep patterns are frequently observed. Suicidal ideation and rarely suicide may occur as a result of permanent vision loss (16). For at-risk individuals, a referral to a mental health practitioner who is familiar with the effects of chronic illness on individuals, as well as being sensitive to the needs of a geriatric patient population, is essential.

If a patient needs psychotropic medication to relieve symptoms, a referral to a psychiatrist should be considered. If the patient needs to talk with someone about feelings of frustration about his/her inability to perform daily living tasks, a referral to a psychologist is more appropriate. If the patient is having specific problems with a family member, a referral to a marriage and family counselor may be the most appropriate. Referrals to mental health care practitioners who are not familiar with both the effects of vision loss and the needs of geriatric patients will likely be less than beneficial. Having a good understanding of what types of referrals our colleagues want and the types of services that our colleagues have to offer our patients should enhance our referral patterns to mental health professionals.

Vision loss is frequently accompanied by a sense of isolation from others and from society (1). The person who is visually impaired is frequently unable to drive (or drive a great distance), resulting in an isolation from the community. Individuals with vision problems may feel embarrassed about their visual disabilities and this may further remove them from society. Those who are visually impaired may be isolated from their natural support groups of family and friends. Moreover, the person with vision loss may be unable to read a newspaper or book, further adding to the sense of isolation from society (14). The sense of social isolation can exacerbate the psychological problems faced by our patients with vision loss. Those who are isolated may have reduced feelings of well-being and may have increased problems with adjustment over time (19,20). Assisting low-vision patients with community involvement can result in improved psychological well-being and functioning (22).

For many individuals, isolation is accompanied by a sense of loneliness. Individuals who are homebound have little means by which to access the company of others. The individual who is homebound must rely on others to come to visit him/her and is forced to rely on others for transportation to doctor appointments (23).

C.Denial

Denial is a strong and natural human response to a risky or unpleasant situation. It may, in fact, be a self-protective behavior (24). Psychologists have suggested that if we believed that we were at great risk of being in a car accident every time we got into a car, we probably would not drive. Unfortunately denial can also be deleterious to our health and wellbeing. This is exemplified in the following case history. Several years ago, I was coordinating an outreach program to assist eligible individuals receive blind disability benefits. I interviewed a patient who had end-stage glaucoma and vision of hand motions in both eyes. I suggested that she might be eligible for these benefits and she replied to me that she was not blind. She had not sought any type of rehabilitation services for those with vision loss,

such as orientation and mobility training (white cane training) as she believed that her ophthalmologist would cure her of her vision problems. Not only was she unwilling to pursue obtaining blind disability benefits, she could not conceive of the possibility that her ophthalmologist could not cure her eye problems. She was in very serious denial. She was relying on others for assistance in daily living tasks, as well as putting herself at risk for attempting to do things that were beyond her visual ability. Many individuals who are totally blind are able to do everything that can be done by those with normal sight, with a few exceptions. But this requires rehabilitation techniques and training. Denial of the permanence of her vision loss allowed this patient to be unsafe in many situations and overly dependent on people in other situations.

This type of scenario can be repeated over and over again when describing the newly (or not so newly) visually impaired. Individuals may continue to drive even though they cannot see well. Men are far more likely than women to insist upon driving even when their vision is in the 20/200 range (23). On the other hand, women may continue to cook elaborate meals even when they cannot see well. People may be so fearful of going totally blind that they do not seek care, or they will downplay the severity of their vision loss to their family members and friends. People do not want to disappoint others, lose their independence, or change their lifestyles. They may believe that the next surgery will finally cure their vision problems, thus maintaining unrealistic expectations of what ophthalmologists are able to do. They may seek opinion after opinion until they hear the news that they want—that a cure is available for their particular problem. They may undergo unnecessary, expensive, or ill-advised treatments, and may not take “no” as an answer when requesting another opinion.

We cannot make people move beyond denial, but we can encourage them to seek appropriate care from rehabilitation specialists or psychologists. Involving family members in this process may also be helpful, Family members should be counseled on the extent of vision loss and the limitations of the individual with vision loss. Unfortunately, family members may actually impede the process of moving past denial, as they may be in denial themselves and may inadvertently influence those with vision problems to remain in denial as well.

D.Why Me? Making Meaning Out of Misfortune

One of the first questions asked by someone who has experienced a tragedy is “why me?” As health care professionals we have heard our patients ask this question on many occasions. Elizabeth Kubler-Ross revolutionized our ideas about the “why me?” question with her studies on death and dying with the terminally ill in the mid-1960s. She suggested that individuals go through a specific process to answer this question and to ultimately accept their own mortality and death. Much of her work was anecdotal and more recent work has suggested that the process is much more individualized than she proposed (25). However, one aspect of the grieving process is virtually universal; that is the process of making meaning out of misfortune. Although little research has been conducted to look at the specific reactions of those with low vision, one should be able to assume that vision loss is considered a personal tragedy, and as such, the need by patients to make meaning out of its presence should be expected. Helping a patient come to terms with vision loss and make meaning of it may be an important part of the rehabilitation process.

Most individuals will try to explain to themselves why something bad has happened to them. Those who are religious may show improvement in psychological well-being and improvement in health when faced with disabling or chronic illness (26,27), and as a result,

more and more physicians are discussing religious beliefs and ideas with their patients (28). Those who are not as religious may look for some “good” to come from their experience with vision loss. The ability to find something good in a bad situation is frequently associated with positive affectivity. Those with a positive affect will be very optimistic about life, whereas those with a negative affect will be very pessimistic about life. The presence of a positive affect has been associated with improved health and well-being (29). Some will spend months feeling depressed, with little time spent on the “why me?” question, while others will immediately focus on the process of making meaning out of misfortune. Those who are unaware that their vision loss is permanent may not try to make meaning out of it and may feel that it is just an extremely annoying part of the aging process that will eventually resolve. They may feel disillusioned with their ophthalmologist and depressed about their situation, especially when they feel that no one is talking with them. Feelings of depression can overwhelm the individual, thus making it even more difficult for him/her to adapt to vision loss. Since the elderly are prone to depression with the onset of chronic illness and disability, the lack of a conversation with the ophthalmologist about one’s visual prognosis may result in serious health and mental health problems.

E.Adaptability in the Elderly

The saying “you can’t teach an old dog new tricks” is very applicable in the realm of lowvision rehabilitation for those with AMD. Many individuals with AMD have vision loss of 20/200 or greater in the better eye after correction. To assist the person with reading tasks, the dioptric strength needed is along the lines of 10 or stronger. This results in a focal distance of 10 cm or less. The question facing the low-vision practitioner is “how can I get my patient to hold that book next to her nose?” In many instances, the older individual with low vision will not tolerate the short focal distance. Others will not have the capacity to hold their reading material steadily (such as those with Parkinson’s disease) and the focal range is very narrow and success is therefore limited. The individual may only be able to read word by word or, worse, letter by letter, with a high-plus add thus making functional reading ability very limited. For individuals with very few health-related comorbid symptoms, reading in this manner is difficult.

For the individual with memory loss, this type of reading is impossible as the individual will forget the words first read before finishing the sentence.

Many patients with AMD just want regular glasses and do not want “those strangelooking glasses.” The person may be annoyed at the focal range, may dislike the weight of the low-vision device, may be embarrassed at its appearance, or may be unwilling to spend the money on the device. Most just want their vision “back the way it was.” Choosing a successful low-vision rehabilitation candidate from among our patients with AMD may be quite difficult. I used to believe that those individuals who had a positive affect were more successful candidates for optical low-vision aids and other types of low-vision rehabilitative strategies. I have found very positive people doing poorly with their aids and more negative people doing quite well. What I have since learned is that acceptance of low-vision aids has little to do with affectivity and much more to do with motivation and adaptability.

Adaptability is very beneficial for seniors, as it may result in the older person learning new skills such as how to use a computer. More and more seniors are finding computer technologies fun and easy to learn. However, elderly individuals with low vision may not readily accept newer computerized technologies. Many may not have sufficient computer skills to use the Internet or World Wide Web, so learning how to use a computer after vi-

loss (34). Individuals with supportive families and friends frequently cope better with vision loss than do those without supportive networks. Those who are married may cope better with vision loss, but this is more likely to occur if the individual with vision loss is male (23). In fact, many men who are visually impaired do not feel “handicapped” by their vision loss because their wives are there assisting them with daily living tasks as usual. On the other hand, women who are visually impaired with normally sighted husbands may have tremendous difficulties coping, as they must continue to perform activities of daily living without spousal support (2). If the woman has an adult daughter living nearby, the daughter may be the one to assist her visually impaired mother cope with vision loss. Familial patterns of behavior can be amplified if a visually impaired individual lives within the household (35). If the family is loving and supportive, that support will likely translate into the new living arrangements with husbands taking over certain domestic responsibilities. If the family unit is dysfunctional, the familial problems can be exacerbated. I had a patient who had been abused by her husband for years. She reported that the abuse had worsened after she lost her vision. He would not allow anyone to assist his wife nor would he allow her to undergo low-vision rehabilitation training. She therefore reported living in a very unsafe environment. As this constituted spousal and elder abuse, the authorities were notified. However, many visually impaired seniors do not receive any intervention and live precarious lives.

Many cultures believe that elderly family members should not have to work or care for the family. This is generally done out of respect for the elderly individual. However, those with vision loss may not be allowed to do anything, as they may be viewed as unsafe to do so. Unfortunately, they also are not allowed to obtain low-vision rehabilitation training, thus making them more dependent on their younger family members than their age alone would warrant.

V.COMMUNITY RESOURCES FOR THOSE WITH VISION LOSS

A.Resources for People with Vision Loss

Numerous resources are available for those with vision loss. They include local resources, county resources, state and federal resources, as well as national not-for-profit organizations and medical organizations such as the American Academy of Ophthalmology. To best assist our patients with low vision, we should attempt to create a personalized reference guide that includes all of these resources. In this way, we will actually be able to screen the type of information that we provide to our patients and their families. We may not want them to access certain types of organizations, whereas we may want them to utilize the resources of other organizations.

A search on the World Wide Web (Internet) may be a great starting point. Searching under the term “low vision” or “blindness” should lead to numerous organizations serving the visually impaired. A review of these sites should help us determine whether or not we wish our patients to access the information. By utilizing the Internet, we will reduce the time we spend searching for these organizations, and we should be able to find the most up-to-date information about each organization. In addition, a call to local senior citizen groups may lead us to social support groups serving the visually impaired. Social support groups may be extremely effective since social support has been shown to increase coping

skills and psychological well-being in those who are visually impaired (34,36). A call to the local department of Rehabilitation should finish our search for local services for the blind and visually impaired. The Department of Rehabilitation provides low-vision devices, orientation and mobility training, and other services to the visually impaired. Generally, those with more severe visual impairment are given preferential treatment, as are those who plan to go back to work. However, if state moneys are available, any individual who is legally blind should be eligible for the services provided by the Department of Rehabilitation.

B.Finding a Good Low-Vision Practitioner

The biggest question facing my colleagues who see patients with low vision is “how do I find a good low-vision practitioner?” This is a very important question, as our reputations are associated with the individuals to whom we refer our patients. Because of this, we must carefully develop a referral list of practitioners we trust. Individuals should only appear on the list ideally after we have had a chance to interview them. During the interview we should ask about such things as training, length of time serving those with low vision, participation in national meetings or activities, membership in professional organizations, and the like. Does this person meet our standards as a specialist in the field? If the answer is “no,” then it may be best to find someone else to provide the services. If we cannot find a specialist we trust who fits low-vision aids, then we might want to consider providing the aids ourselves. In this way we can have control over what our patients receive. If that does not seem feasible, we should make sure that the person doing the fitting has a money-back guarantee on all products sold. This reduces the likelihood that our patients will purchase devices that are of little use.

VI. SUMMARY

Patients need sufficient information regarding AMD to understand their prognosis and to be able to seek appropriate low-vision care. This information is best delivered by the patient’s own ophthalmologist. Patients frequently misunderstand the concept of low vision and legal blindness. Many focus on the word “blindness” and believe that if they become legally blind they will eventually go totally blind. A thorough explanation of what constitutes low vision should eliminate this confusion.

Profound vision loss can result in the individual needing assistance from others for such simple things as writing a check, reading a bank statement, or picking out a good piece of meat at the market. Dependence on others can make the person with low vision feel worthless. Individuals with low vision, who can no longer drive or take the bus easily, must depend on others for transportation and socializing. Those with limited support networks may become very depressed as a result of social isolation.

Those with macular degeneration may deny the seriousness of their vision loss to maintain their independence and driver’s license. Denial can have very deleterious consequences on the individual and his/her family. Individuals who have experienced a serious loss will search for meaning in their misfortune and will frequently need to answer the “why me?” question.

Those who are elderly frequently have difficulty accepting low-vision aids. This is often due to the fact that the individual must read in a fashion that is very unfamiliar. Many

refuse to use low-vision aids because they cannot read in the way “normal people” can. Family and friends who are supportive of the person with AMD are necessary for quick acceptance and recovery on the part of the patient. A good low-vision practitioner should be willing to offer patients a money-back guarantee on all low-vision items sold.

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