National Eye Health Education Program (NEHEP)

Life With Low Vision:

A Report on Qualitative Research
Among People With Low Vision and Their Caregivers

Executive Summary

METHODOLOGY

In early 1997 the National Eye Institute conducted qualitative research among individuals with low vision. The purpose of these groups was to explore among middle-aged and older people with low vision and those close to and caring for them

• How low vision affects quality of life,
• Awareness of services, information, and devices available to help, and
• Appropriate interventions to create awareness of available services, information, and devices.

People with low vision were interviewed in focus groups, one on one and through telephone interviews. Two existing low vision support groups were also interviewed. The focus groups were divided by age, sex, and income. A total of six groups were conducted among women and two among men. One individual interview was conducted with a man. Two low vision support groups which combined men and women were also interviewed. Telephone interviews were conducted among nine respondents. Two additional focus groups were conducted among individuals who care for friends or family members with low vision.

Three groups were conducted among individuals 45 to 64, four among individuals 65 to 74, and two among individuals 75+. The two existing low vision support groups included individuals spanning the 65 to 75+ age range.

An effort was made in all the groups to use the term, "eye care professionals" until respondents began specifically mentioning optometrists, ophthalmologists or low vision specialists. Usually the groups did not know what was meant by the term "eye care professional," so the differentiation was made early in the discussion. Respondents had specific information about their own experiences with optometrists, ophthalmologists and low vision specialists working in a clinical setting. To assist program development, information about each specialty is described in this report as provided by respondents.

DEFINITION

While many respondents did not understand the term "low vision," most thought it had something to do with not seeing well. The term "visual impairment" carried a more negative connotation and seemed to have more specific reference to a physical problem.

QUALITY OF LIFE

Respondents’ quality of life was impacted by loss of ability to perform daily activities. The inability to drive was mentioned frequently as causing a great shift in the quality of life, particularly because it limits independence. Reading was also frequently mentioned by respondents as something they are no longer able to do as a result of vision loss. Threading needles and sewing challenged almost all respondents. Men were often more likely than women to say they were not experiencing problems, perhaps because the men seemed to have more help from spouses with household chores than did women. Additionally, men appeared to be more likely than women to drive even though their eyesight was poor.

COPING

Respondents coped with vision loss in much the same way they coped with growing older. Many said they just had to accept their physical conditions. Many said they just worked on getting along and making accommodations for their low vision. Having glasses close by was important for many. Lack of transportation and the need to ask for assistance bothered almost all respondents. People were not quick to think about coping strategies that would help them — they were more likely to wish for cures or treatments for their problems.

Married men seemed more likely than women to be able to compensate for their lost vision because they could depend on their wives. Low income respondents were less fervent information seekers than those with more money. Older respondents were most likely to make up their minds that low vision is something with which they can live.

In response to the question "Does losing your eyesight mean losing yourself?" some respondents felt that losing their eyesight meant losing themselves; others who seemed to adapt were less likely to feel that way. Some older respondents who had lived with low vision over a period of many years seemed more resigned to life with low vision.

DEVICES

Awareness of devices is generally low and few take advantage of devices with which they are familiar. Respondents in support groups and some of the older respondents whose vision was severely impaired were knowledgeable about devices. Magnifiers were most frequently used. Until people lost significant amounts of vision, they were not interested in devices. Individuals with more severe vision loss seemed more aware of devices. Some, but not all, people who were involved in organizations or saw low vision specialists, seemed somewhat more aware of devices.

SERVICES

There is a lack of awareness of services among all respondents. Many respondents who knew of services did not access them because they did not perceive their vision to be poor enough to need them. Many older people with very poor vision seemed to assume that they would have to be totally blind before they needed special services. Respondents who were aware of some services identified services such as reading services, free directory assistance, grocery shopping escorts, seeing eye dogs, and support groups.

Some respondents were interested in support groups. They liked the idea of being able to learn how others are coping with their vision problems and how to get help and find out about treatments. One-on-one buddy systems were also perceived as a useful way to learn about how to cope. Often respondents said they would like to try both to get a better understanding about which would work for them.

Transportation services were desired by many respondents.

ROLE OF THE EYE CARE PROFESSIONAL

Most respondents visited eye care professionals regularly, particularly ophthalmologists. A vast majority of respondents had experiences with eye care professionals who delivered a diagnosis that they could not do anything more for them. This made respondents feel "terrible." Most respondents said that their eye care professionals provided little to no medical information about their vision problems and no information about how to cope with their conditions or diagnoses.

Low vision specialists working in a clinical setting seem to provide respondents better care than ophthalmologists or optometrists, but they were not said to provide educational or coping information. Many respondents thought their eye care professionals were very busy and did not have the time to explain much to them.

ACCESS TO EYE CARE

Most respondents had health coverage for doctor’s visits through either private insurance or Medicare. Some respondents were not sure of their coverage. Costs for glasses and lenses were covered to a far lesser extent. Some were in HMO plans that only provide for glasses once every 2 years.

MESSAGES

Respondents were told that an educational program was to be developed for people with low vision. They were asked to describe the most important messages that the educational program could convey. One of the most frequently mentioned messages was that "information and help is available." Respondents want to know where they can call to get additional information about their medical problems. They want someone to tell them that they can help. Respondents were also interested in learning that low vision was a common problem and that they are not alone. The tone of the messages should be hopeful.

Information about treatment and prevention was also desired by many. Respondents said they want to know how to prevent going completely blind and how to treat or cure their problems. They also wanted to know how effective their specific treatments had been — people desire information specific to their own vision problems.

A number of respondents expressed sensitivity with regard to low vision being considered a symptom of "old age." Many said they had been told by their eye care professionals that their vision problems were diseases of old age, and they rejected being told that they were old.

CHANNELS FOR INFORMATION

Almost all respondents said that the ophthalmologist’s office would be the most logical and efficient place to receive information about low vision. Low vision clinics were also seen as appropriate. Other channels included optometrists, pharmacies, the clergy, nonprofit vision organizations, American Association of Retired Persons, senior centers, television, and state governments.

Respondents with enough vision to read said that large-print brochures that described their vision problems would be useful for providing them with information about low vision. Many liked the idea of a packet of information that could be provided by the eye care professional. The packet could contain information about specific vision problems, provide resources for medical care and coping assistance and lists of questions that individuals could ask the doctor. Those with severe vision problems said that they can no longer read large-print brochures.

Some respondents were also interested in watching a video that could tell them about their specific problems — they could see what is happening to their eyes. They would also like the video to show what types of complications could arise and how to respond to them in order to alleviate their fear of not knowing what will happen to them. Most said they would rather watch a video at home because they would be able to concentrate better and watch it several times.

Several respondents said they would like to have a list of questions they should ask their doctor, because often they forget questions that occur to them between appointments. Also, they often do not know enough about their problems to know what to ask.

Many liked the idea of an 800 number that individuals could call for more information. Some liked the idea of getting information through transit advertising. Many wanted it via television. Others liked the idea of using special newsletters and organizations’ publications to place stories and advertising about low vision.

Accessing information by the computer was not an appropriate tool for respondents. Many said they "missed the computer age."

When asked if they would like to receive the information or if they would prefer their caregivers to receive it and then relay it to them, the vast majority of respondents said they would like to get the information themselves. They want information directly because they want to keep their independence, do not think their children would think to find the right information, believe their children are too busy, do not think their children would pass the information on, or have no family left that really cares.

CAREGIVERS

Caregivers confirmed much of the information about the limitations of individuals with low vision.

Most caregivers were not aware of services and devices that would help people cope with low vision. Many caregivers did not feel that their family members and friends with low vision were in need of services and devices to help them cope.

Eye care professionals were mentioned by caregivers as the best channels of information to people with low vision. Caregivers said they have a need to know there is information out there that they can obtain when the time comes that they need help.

Caregivers would like to know how they can assist people with low vision and suggest coping strategies without injuring their pride. They need to hear messages that tell them how to talk and how to counsel — "Show some love."

Specific materials that caregivers said would be useful include safety tips for around the house (i.e., a "clicker" that beeps so you can follow the noise when you cannot find your glasses), information on the latest treatment options, advertisements of local support groups, a pamphlet or leaflet addressing emotional support, and subliminal tapes to build self-esteem.

RECOMMENDATIONS

Based on the research, the National Eye Institute should encourage development of a national effort to build awareness of services, support, and resources for people with low vision. At a minimum, this effort should be two-pronged — first focusing on improving the quality of counseling and information provided through eye care professionals, especially ophthalmologists and low vision specialists and second providing access to information about resources, support, and services to individuals with low vision through the mass media and other channels on the national and local levels.