Adaptation to low vision caused by age-related macular degeneration: a case study.

One in eight Americans aged 65 and older has an eye disease resulting in low vision (National Eye Institute, NEI, 2006), and more women than men are visually impaired, mainly because women live longer (NEI, 2002). Age-related visual impairments are an indicator of a decline in activities of daily living and self-help skills (Travis, Boerner, Reinhardt, & Horowitz, 2004). The top eye conditions that affect older adults are macular degeneration, glaucoma, and diabetic retinopathy. Age-related macular degeneration (AMD) is the leading cause of vision loss in the United States for persons aged 60 and older (NEI, 2007). It adversely affects the ability of an individual to read standard print and can limit a person's independence in preparing meals, using a telephone, taking care of finances, traveling, shopping, taking medications, and washing laundry (Ryan, Anas, Beamer, & Bajorek, 2003).

Despite their decreased ability to perform activities of daily living and instrumental activities of daily living (Crews & Campbell, 2001; Heyl & Wahl, 2001; Horowitz, 2004; Raina, Wong, & Massfeller, 2004; Travis et al., 2004), persons with low vision still have the need and desire to perform everyday activities that support their life roles. Given their inability to engage in these activities in the same manner as they once did and their continued desire to do so, persons with low vision usually adapt to the challenges of performing these activities.

The purpose of this study was to elucidate how a woman with AMD adapted to the challenges that she faced in performing everyday activities. The research question was "What successful adaptations does a woman with AMD use to address the functional challenges of performing the activities?"

LITERATURE REVIEW

Although the primary focus of vision rehabilitation needs to include methods to complete everyday activities, the complexity of the visual impairment leaves other needs to be addressed. Simply modifying physical performance does not yield adaptation (Crews & Campbell, 2001; Heyl & Wahl, 2001; Horowitz et al., 1998). Persons with low vision use multiple strategies to address the many difficulties they encounter (Horowitz et al., 1998; Lindo & Nordholm, 1999; Moore, 1999) and use different strategies at different times and in different situations (Lindo & Nordholm, 1999). Strategies for adapting are generally organized into three major areas: "behavioral (overt, observable actions), psychological (cognitions or emotions), and social (involving other individuals)" (Horowitz et al., 1998, p. iii).

Behavioral coping strategies include the use of residual vision, adaptive devices, optical devices, other senses or memory, modification of tasks, participation in rehabilitation services, and the restriction of activities (Horowitz et al., 1998). Brennan and Cardinali (2000) found that novel coping strategies led to positive adaptation to age-related vision loss. They determined that novel coping strategies were used most commonly (49%) in the behavioral domain and included seeking low vision services to learn new skills or the use of adaptive or optical devices.

Many researchers believe that psychological adjustment is the key to adaptation (Brennan & Cardinali, 2000; Horowitz et al., 1998; Thompson, Goldbaber, Amaral, & Ringering, 1992). Lindo and Nordholm (1999) examined the psychological adjustment and well-being of persons with low vision by using Persson's (1990) model of adaptation, which assumes that a person will adopt several strategies from among six positive adaptation strategies and five negative adaptation strategies. They studied the use of the positive strategies of acceptance (stoicism and revaluation), trust, positive avoidance, minimization, independence, and control, and the negative strategies of denial, resentment, shame, isolation, and helplessness. The participants in their study used the positive strategies of revaluation, minimization, and control less than did the control group, indicating a lower level of adjustment. Reinhardt (1996, p. 268) also examined the psychosocial adaptation to visual impairment, stating that "successful adaptation includes learning compensatory skills, renegotiating supportive relations, and maintaining mental health." She concluded that less functional disability, higher education, and a greater quality of friendship support improved adaptation.

Social support, which can come from family members, friends, peers, rehabilitation providers, neighbors, or helpful strangers, has been shown to be a mediating factor for adjustment to low vision (Allen, 1989; Davis, Lovie-Kitchin, & Thompson, 1995; Taylor & Upton, 1988). Reinhardt (1996) found that the social support of friends and family members is valuable for elderly people who are visually impaired; the participants in her study had higher life satisfaction, fewer depressive symptoms, and better adjustment. Brennan and Cardinali (2000) determined that being a consumer of vision rehabilitation services and participating in support groups led to the use of novel coping strategies.

METHODS

I used a qualitative, instrumental case-study approach to obtain a greater understanding of the process of adaptation to low vision. One woman was recruited who fit the inclusion criteria; that is, she was aged 65 or older, was diagnosed with AMD, was not working, was female, and had successfully adapted to low vision. I approached a center in south Alabama that serves people who are blind or have low vision for a potential participant. A case manager recruited a past client whom she thought met the inclusion criteria. After the client agreed to participate, I called her and arranged an interview.

The participant was aged 81, Caucasian, well educated, upper middle class, and a widow for the second time. Diagnosed with AMD four years earlier, she had undergone six laser surgeries to prevent further deterioration.

Procedures

Arrangements were made to interview the participant in her home, and she gave informed consent consistent with the Institution Review Board of Nova Southeastern University, where I was enrolled in the occupational therapy doctoral program at the time of the study, prior to the interview. The interview lasted more than two hours and addressed how the participant had successfully adapted to the challenges she faced. Questions addressed what types of adaptations she made in her activities of daily living and instrumental activities of daily living; her education; her work, play, and leisure activities; and her participation in social activities. Probes were used to elicit information on the changes the participant made in performing daily activities, such as bathing, dressing, eating, feeding, functional mobility, caring for personal devices, and grooming and personal hygiene. Questions also addressed the adjustments that the participant made in instrumental activities of daily living, such as the care of pets, use of communication devices, mobility in the community, financial management, health management and maintenance, home maintenance, meal preparation and cleanup, safety procedures and emergency responses, and shopping. Other questions addressed the modifications the participant made in leisure pursuits; volunteering; and interactions with family members, friends, and peers. The final question asked if she had any suggestions to help others with AMD adapt successfully.

I audiotaped the interview and took field notes of observations. A transcriber, who had signed a confidentiality agreement, transcribed the interview.

Data analysis

I checked the transcription for accuracy and cross-checked it with my field notes of the interview to increase the trustworthiness of the data. I grouped recurrent topics under initial categories that emerged from the data and reread the interview to determine if other categories existed and if more data belonged in the categories. I then collapsed the categories and developed three themes to encompass the meanings and perspectives of the participant (Depoy & Gitlin, 2005).

RESULTS

The three themes that emerged from the data were representative of how the participant perceived her adaptation to low vision. These themes were (1) attitude, (2) modification of tasks, and (3) social support.

The theme of attitude included five categories: acceptance, positivism, independence, altruism, and faith. The first category, acceptance, is a step toward new beginnings. The participant stated, "Accept the things you can't change, and once you accept them, then you begin looking for these things to make them acceptable." She explained how a potential problem became almost an adventure because she had a positive attitude. "And if I go to the buffet, it's kind of interesting. If I can't tell by looking at it, what little I can see, I always say this is going to be a treasure hunt. Let's see what I came out with when I get back to the table." The importance of maintaining her independence was evident and, with the right attitude, achievable. One day, a friend asked the participant if she wanted her meat cut up. She said that she felt like crying because her friend did not think she was capable of the task and did not realize that if she needed help she would ask for it. She cut up her own meat and spilled gravy on the table but stated, "That was alright."

With regard to altruism, the participant commented about her interest in helping others who suffer the same plight: "Anything that I can do to help somebody who has it." Faith inspired an inner strength that she was able to draw on: "I'm not one to stand on the street corner and hand out tracts, but my faith is very, very important to me. If I had not had a lot of it, I couldn't have handled what I've had to handle through my life."

The second theme, modification of tasks, included using other senses or memory, residual vision, and assistive devices to perform everyday activities. The participant used these methods in isolation or in combination. As she put it, "I have a magnifying mirror. I can see enough to put on a powder base ... enough to get by. A lot of things you do, it is by memory." She used a combination of memory and other senses when she played cards; although she needed someone to read the cards, she could then remember everyone's hands. A good example of how she used her residual vision was the method she used to fill her coffee cup: She put a teaspoon in the cup, poured the coffee, and stopped when the correct amount of the spoon handle was still visible. The participant readily accepted some assistive devices but found little use for others. She showed me a guide that allowed her to write checks independently, albeit slowly. Although she used her closed-circuit television (CCTV) only occasionally, she spoke fondly of this major assistive device in her home, referring to it as the "magic eye." She mentioned that she had made her favorite pie, butterscotch, by using the CCTV to read the recipe.

The final theme was the use of social support, with three categories of help: from others, the blindness system, and peers. A certain degree of assertiveness is necessary to access this support, but it is available on three levels. The first level of support is from family members, friends, and helpful strangers. The participant did not like to disturb her son or daughter-in-law because they were busy working, but she did go shopping with her daughter-in-law, and her son handled her finances. Her friends took her to play cards, to church functions, and to restaurants. The participant told me that she did not hesitate to ask strangers in the grocery store to read food labels for her, believing that at her age, she deserved their respect and assistance. The second level of support is from the blindness system. The participant used a transportation system for people who are visually impaired and jokingly referred to the van as "the black hearse." The final level of support is from her peers. A person who is visually impaired can approach peers for special solutions to challenging tasks. The participant was having difficulty applying toothpaste to her toothbrush, so she asked a peer about the method he used. "He said, 'squirt a little toothpaste in a dish and stick your toothbrush down in the dish.' And I said, 'Oh, why didn't I think of that?'"

DISCUSSION

The themes that were extracted from the data are consistent with the themes and categories that have been discussed in previous studies. Researchers have found that a positive attitude helps in adjustment (Kleinschmidt, 1999: Lindo & Nordholm, 1999) and that a positive personality helps in adapting to a visual impairment (Horowitz et al., 1998). In addition, attitudes of acceptance and independence have been shown to be supportive in adjusting to low vision (Horowitz et al., 1998; Lindo & Nordholm, 1999). In this case study, the theme of attitude had the largest amount of categories grouped under it (five). Horowitz et al. considered attitude to be a psychological means of adaptation and found that not only did psychological coping strategies predominate over behavioral and social domains, but that the psychological domain encompassed a wider variety of coping strategies.

The use of other senses or memory, assistive devices, and residual vision to modify tasks in this study were the same means as those found by Horowitz et al. (1998). The participants in Moore's (1999) and Rosenthal's (1995) studies also mentioned the use of other senses, memory, and assistive devices.

Social support for the participant in this study included assistance from others, the blindness system, and peers. The literature has confirmed the importance of peer support as a helpful factor in adjustment to low vision (Allen, 1989; Horowitz et al., 1998). Family members and friends lend support (Kleinschmidt, 1999; Rheinhardt, 1996; Teitelman & Copolillo, 2005), as do neighbors (Kleinschmidt, 1999) and sometimes even strangers (Moore, 1999).

The study had a number of limitations. First, I did not confirm the interpretations of the data with the participant. Second, the wording of the questions may have biased the participant to report only strategies that she deemed successful. Finally, the participant was a recipient of state and local services for people who are visually impaired. It is possible that a person who seeks such services is more motivated to maintain independence and to have a more optimistic outlook.

IMPLICATIONS

Many factors may influence the process of adaptation. Future research needs to examine how adaptation is influenced by different support systems, economic status, gender, context or environment, or low vision secondary to other causes of visual impairment. In addition, the use of other research methods, such as a grounded theory approach, may be a more efficacious means of determining the process of adaptation than a case-study method. Grbich (1999, p. 172) suggested that the grounded theory technique is useful "where processes, relationships, meanings and adaptations are the focus." In addition, quantitative measures could increase the generalizability of the results.

The results of the study indicate that providers of vision rehabilitation need to educate their clients and families on common strategies, assistive devices, and available services. A client's vision may continue to diminish, and new difficulties with everyday activities may develop that require continual adaptation (Teitelman & Copolillo, 2005).

In addition, an assessment of the adaptation strategies that a client uses may yield valuable information to assist in vision rehabilitation by facilitating adaptation in a manner that is conducive for the individual. As a client masters difficult tasks, he or she will gain independence, an important aspect of attitude, as this study showed.

CONCLUSION

The interview for this study focused on functional changes that the participant made in performing everyday activities. Given the emergence and importance of the theme of attitude, despite questions directed toward overt adaptations, I concluded that the interview was deficient and that the essence of adaptation to low vision cannot be determined with it. The process of adaptation is more complicated than simply listing functional adaptations. These findings suggest the need for future research on the process of adaptation, to give providers of vision rehabilitation services crucial information on how to facilitate successful adaptation.

REFERENCES

Allen, M. N. (1989). The meaning of visual impairment to visually impaired adults. Journal of Advanced Nursing, 14, 640-646.

Brennan, M., & Cardinali, G. (2000). The use of preexisting and novel coping strategies in adapting to age-related vision loss. The Gerontologist, 40, 327-334.

Crews, J., & Campbell, V. (2001). Health conditions, activity limitations, and participation restrictions among older people with visual impairments. Journal of Visual Impairment & Blindness, 95, 453-467.

Davis, C., Lovie-Kitchin, J., & Thompson, B. (1995). Psychosocial adjustment to age-related macular degeneration. Journal of Visual Impairment & Blindness, 89, 16-27.

DePoy, E., & Gitlin, L. N. (2005). Introduction to research: Understanding and applying multiple strategies (3rd ed.). St. Louis, MO: Mosby.

Grbich, C. (1999). Qualitative research in health: An introduction. Thousand Oaks, CA: Sage.

Heyl, V., & Wahl, H. (2001). Psychosocial adaptation to age-related vision loss: A six-year perspective. Journal of Visual Impairment & Blindness, 95, 739-748.

Horowitz, A. (2004). The prevalence and consequences of vision impairment in later life. Topics in Geriatric Rehabilitation, 20, 185-195.

Horowitz, A., Brennan, M., Reinhardt, J., Leonard, R., Benn, D., & Cimarolli, V. (1998). Strategies developed by visually impaired elders to cope with the emotional and functional consequences of vision loss. New York: Arlene R. Gordon Research Institute, Lighthouse International.

Kleinschmidt, J. J. (1999). Older adults' perspectives on their successful adjustment to vision loss. Journal of Visual Impairment & Blindness, 93, 68-81.

Lindo, G., & Nordholm, L. (1999). Adaptation strategies, well-being, and activities of daily living among people with low vision. Journal of Visual Impairment & Blindness, 93, 434-446.

Moore, L. W. (1999). Living with macular degeneration: Creative strategies used by older women. Journal of Ophthalmic Nursing Technology, 18, 200-206.

National Eye Institute. (2002). Statistics and data: Vision problems in the U.S. Retrieved from http://www.nei.nih.gov/eyedata/tables/ ALLVisionImpairedFinal.xls

National Eye Institute. (2006). National plan for eye and vision research. Retrieved from http://www.nei.nih.gov/strategicplanning/ np_low.asp

National Eye Institute. (2007). Age-related macular degeneration. Retrieved from http://www.nei.nih.gov/health/maculardegen/ armd_facts.asp

Persson, L.-O. (1990). Adaptation to chronic disease and handicap: A critical analysis and summary. Goteborg, Sweden: Department of Psychology, University of Goteborg.

Raina, P., Wong, M., & Massfeller, H. (2004, May 7). The relationship between sensory impairment and functional independence among the elderly. BMC Geriatrics, 4, 3.

Reinhardt, J. P. (1996). The importance of friendship and family support in adaptation to chronic vision impairment. Journal of Gerontology, 51B, 268-278.

Rosenthal, S. B. (1995). Living with low vision: A personal and professional perspective. American Journal of Occupational Therapy, 49, 861-864.

Ryan, E. B., Anas, A. P., Beamer, M., & Bajorek, S. (2003). Coping with age-related vision loss in everyday reading activities. Educational Gerontology, 29(1), 37-54.

Taylor, R. E., & Upton, L. R. (1988). Stress and coping: Implications for visual impairment. Journal of Visual Rehabilitation, 2(3), 23-28.

Teitelman, J., & Copolillo, A. (2005). Psychosocial issues in older adults' adjustment to vision loss: Findings from qualitative interviews and focus groups. American Journal of Occupational Therapy, 59, 409-417.

Thompson, P., Goldhaber, J., Amaral, P., & Ringering, L. (1992). Psychological strategies for assisting older adults who are partially sighted. Journal of Visual Impairment & Blindness, 86, 78-80.

Travis, L. A., Boemer, K., Reinhardt, J. P., & Horowitz, A. (2004). Exploring functional disability in older adults with low vision. Journal of Visual Impairment & Blindness, 98, 534-546.

Theresa Marie Smith, Ph.D., O.T.R., C.L.V.T., assistant professor, School of Occupational Therapy, Texas Woman's University-Houston Campus, 6700 Fannin Street, Houston, TX 77030; e-mail: <[e-mail]>.