Caregivers with visual impairments: a preliminary study.

Persons who are elderly, visually impaired, and primary caregivers for ailing or disabled spouses or significant others are a unique population that has not been studied previously. By definition, informal caregivers are family members or friends who provide unpaid day-to-day assistance with activities of daily living and are familiar with the medical and social states of the recipients of care (Ankri, Andrieu, Beaufils, Grand, & Henrard, 2005). Traditionally, persons with visual impairments have been thought of as recipients of care. However, as the U.S. population ages, many persons who are elderly and visually impaired may be providing care for others.
Decreased visual acuity reduces the ability of individuals to care for themselves and others (Stevenson, Hart, Montgomery, McCulloch, & Chakravarthy, 2004). Approximately 3.4 million Americans have some type of visual impairment, and 1 in 28 Americans aged 40 and older is affected by low vision (Gohdes, Balamurugan, Larsen, & Maylahn, 2005). That number is expected to increase significantly as the U.S. population ages because the prevalence of ocular diseases that cause visual impairment increases significantly with age (Gohdes et al., 2005).
About 125 million persons in the United States were living with chronic health conditions in 2000, a number that is expected to increase to about 157 million by 2020 (Anderson & Knickman, 2001; Rundall et al., 2002). Pandya (2005) estimated that approximately 44.4 million persons provided informal care to adult family members with chronic illnesses or physical disabilities during a one-year period. These caregivers help their family members remain at home by providing assistance with such things as bathing, preparing food, eating, managing money and medication, traveling for medical appointments and other activities, and safely transferring their family members from a bed to a chair or wheelchair. Although informal caregivers are unpaid, the value of informal caregiving has been estimated to be upward of $257 billion annually (Arno, 2002).
Persons who are visually impaired experience a decreased ability to observe visual information and may have a reduced quality of life and limitations in functional activities (Chakravarthy & Stevenson, 2005; Hassell, Lamoureux, & Keeffe, 2006; Knudtson, Klein, Klein, Cruickshanks, & Lee, 2005; Lamoureux et al., 2007). Common functional problems that are associated with vision loss include significant difficulty reading small print and reading and writing checks; decreased facial recognition; a decreased ability to gather, store, and retrieve information; a decreased ability to administer medications; decreased mobility; a greater risk of injury resulting from falls; the inability to drive; and problems with shopping, cleaning, grooming, and other tasks that are dependent on vision (Bailey, 1988; Bullimore, Bailey, & Wacker, 1991; Cahill, Banks, Stinnett, & Toth, 2005; Klein, Moss, Klein, Lee, & Cruickshanks, 2003; Park, 1999).
Numerous studies have shown that caregivers have high levels of stress and physical and psychological morbidity (Beach, 2005; Buck et al., 2000; Hirst, 2005; Mafullul & Morriss, 2000; Navaie-Waliser et al., 2002; Navaie-Waliser, Spriggs, & Feldman, 2002; Pinquart & Sorensen, 2006; Yakubu, 2000). Caregivers may be at an increased risk for illness, poor immune function, infection, and depression (Kiecolt-Glaser, Dura, Speicher, Trask, & Glaser, 1991; Vitaliano, Zhang, & Scanlan, 2003; Wu et al., 1999). At least one study suggested that caregivers with compromised mental and physical health may provide lower-quality care to the recipients of care (Beach, 2005). Caregivers who are visually impaired may have a variety of unique concerns because of their difficulties with vision loss and the exceptional burdens and strains of providing care for a family member who is chronically ill or disabled. The three case reports presented here highlight some issues that these caregivers face.
METHOD
These case reports were gathered as part of a study to analyze the effects of a pilot, one-week intensive low vision rehabilitation program at the Birmingham Department of Veterans Affairs (VA) Medical Center. The participants were caregivers who were legally blind by U.S. definition and stated that they could not attend a regular 4-6-week inpatient vision rehabilitation program. The case reports call attention to the plight of caregivers who are visually impaired. The results of other aspects of the study will be reported in another article. The study was conducted in compliance with the tenets of the Declaration of Helsinki for research on human subjects and with approval of the institutional review board.
Participants
Participant 1. Mr. X, aged 77, is severely visually impaired because of macular degeneration that began to affect his vision about one year prior to the start of the study. He has been the primary caregiver for his wife for the past 25 years. Mrs. X suffers from end-stage multiple sclerosis and can no longer move either leg or her left arm. She has been in a wheelchair for the past 10 years. The couple has had a lift for many years to help transfer Mrs. X from her bed to her wheel chair, from her wheelchair to the toilet, and so forth. Mr. X has several other chronic conditions, including a compression fracture of the spine and a heart condition from a heart attack that he suffered a few years ago. Despite his own health problems, he has cooked, cleaned, shopped, managed health care appointments, and administered medication and hygiene regimens for himself and his wife for many years. However, his vision loss now has a significant impact on his ability to manage all these tasks. Mr. X can no longer drive to the store or to medical appointments, and the couple must now depend on friends and neighbors to help them with transportation. He can no longer see well enough to manage their bills, although his wife is able to help with the reading involved in financial management. He has cut his fingers numerous times while cooking, so now the couple eats frozen dinners and peanut butter sandwiches most of the time.
Mr. X said that he has had problems managing medications over the past year because of his vision loss. He uses separate pill organizers for himself and his wife, but has problems determining if he has correctly organized the pills in the right compartments. He stated that he identifies his and his wife’s medications by their size and texture, but cannot discriminate colors–a situation that caused a problem a few months ago when his blood thinner medication was filled at a higher dosage than the previous prescription and had to be cut in half. Mr. X could not read the directions and did not recognize the change in dosage or that the tablets were a different color than those that were previously prescribed. The result was that he took double dosages of blood thinner, with severe adverse health effects. Although Mr. X was concerned about this problem, his greatest concern was that he might confuse his wife’s medications, which could be devastating. He stated that he has a great deal of difficulty trying to refill prescriptions by the automated telephone system because he has difficulty reading the numbers on the phone keypad and cannot find and read the prescription number on a bottle fast enough (even with a pocket magnifier) to enter necessary information before the system disconnects.

Responses, Coping Strategies: Narratives of Caregivers of Children with Visual Impairments in Namibia

Paperback– December 1, 2011
by Cynthy K. Haihambo (Author) , Anthony H. Brown (Author) , Elina I. Tobias (Author) & 1 more
Available at Amazon.com in Paperback
The book contains narratives of caregivers of Namibian children with Visual Impairments. The data was collected through a research project of the Research and Publication Committee of the University of Namibia. The book provides deep insights into the cultures and practices surrounding the disability discourse in Namibia.The three authors, together with their research assistants spend a lot of their time sensitizing educators and communities about the wide understanding of the concept of “inclusion” and the rights and entitlements of all those who could be at risk of being excluded from education and other developmental processes. These include children from marginalized communities and ethnic minorities, the girl-child, the boy-child, children affected by HIV and AIDS, children subjected to abject poverty and many others who often find themselves at the brink of their communities. This particular book however, focused on children with visual impairments and the limitations facing their caregivers to ensure their inclusion.