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AFB JOURNAL OVISUAL
IMPAIRMENT& BLINDNESS
  
Expanding possibilities for people with vision loss  
 

January 2012 • Volume 106 Number 1

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Is My World Getting Smaller? The Challenges of Living with Vision Loss

Sue Berger

Print edition page number(s) 5-16
Abstract: Introduction: Vision loss influences both basic and instrumental activities of daily living. There is limited information, however, on the relationship between vision loss and leisure activities. The research presented here was part of a larger study that aimed to understand the importance of participation in leisure activities for those with vision loss. This article focuses on one key theme that emerged from the data: the challenge of engaging in leisure activities outside the home for older adults with vision loss.

Methods: Semistructured interviews and participant observation were used to collect data from 26 adults aged 70 years and older with vision loss. Only those who perceived themselves to be in good or excellent overall health, separate from vision loss, were included.

Results: Themes that emerged related to limited leisure activities outside the home included both personal and environmental factors, such as challenging physical environments, struggling to "get there," feelings of vulnerability, having decreased energy, and lacking assertiveness.

Discussion: The results indicated that vision loss is a key factor that limits one's ability to engage in out-of-home activities. There is a mismatch between environmental and personal factors that prevents participation in many activities. Although it appears that the participants chose not to engage in leisure activities outside the home because the activities were not within their competence, it is clear that these decisions were neither easy nor desirable.

Implications for practitioners: Therapists who provide services to older adults with vision loss should work with their clients to explore ways to facilitate participation in leisure activities in the community. Advocating for features that increase access and participation, addressing safety, exploring ways to conserve energy, and practicing assertive communication are all important components of a comprehensive vision rehabilitation program.

Funding for this study was provided by dissertation grants from the American Occupational Therapy Foundation, the University of Massachusetts Office of Research and Sponsored Programs, and the University of Massachusetts Gerontology Department. I extend my sincere appreciation to Jan Mutchler, Ellen Bruce, Donna Haig-Friedman, and Richard Jamara, for their support and guidance throughout the study.


Engagement in leisure activities is important to the health and well-being of older adults (Iwasaki, 2007; McAuley et al., 2000; Silverstein & Parker, 2002). More specifically, there is evidence that participation in leisure activities that occur outside the home is related to a higher quality of life (Farquhar, 1995; Wahl, Heyl, & Schilling, 2002). There have been discussions of the challenge of "getting out" for older adults in the literature on the cessation of driving (Rosenblum & Corn, 2002; Vanderbur & Silverstein, 2006), the fear of falling (Rantakokko et al., 2009), and dementia (Duggan, Blackman, Martyr, & Van Schaik, 2008). These are just a few of the variables that influence one's ability to get out as one ages, increasing the likelihood of a less varied and smaller environment. The addition of vision loss to other changes during aging makes getting out to engage in activities even more challenging (Heyl, Wahl, & Mollenkopf, 2005).

Low vision is considered one of the top 10 causes of disability in the United States (Hootman, Brault, Helmick, Theis, & Armour, 2009). It is projected that within the next 30 years, the number of older adults with low vision will double (Vision Problems in the U.S., 2008). There is extensive evidence that vision loss influences both basic activities of daily living (that is, self-care) and instrumental activities of daily living (IADLs) (that is, activities beyond self-care that support daily life at home and in the community) (see, for example, Horowitz, 2004). There is limited information, however, on the relationship between participation in leisure activities and vision loss and even less information on vision loss, and participation in out-of-home leisure activities.

Research has found that adults aged 70 and older with vision loss have more difficulty getting outside than do those without vision loss (Crews & Campbell, 2001) and that older adults with vision loss restrict their mobility in the community (Rudman & Durdle, 2009). Vision loss has been shown to be directly related to IADLs that take place outside the home (such as shopping and banking) (Wahl et al., 2002).

In their model of selective optimization and compensation, Baltes and Baltes (1990) explained that older adults opt out of activities that are not within their competence. Lawton and Nahemow (1973) emphasized that the right fit between environmental and personal factors leads to engagement in activities, and so it is possible that activities that occur outside the home do not match the personal competence factors of older adults with vision loss.

Despite evidence that people with vision loss engage in few activities outside the home, little else is known about the struggles that older adults with vision loss encounter when they want to engage in leisure activities outside the home. The research presented here was part of a larger study that aimed to understand the importance of participation in leisure activities by those with vision loss and the many factors that influence participation (Berger, 2009). This article focuses on one key theme that emerged from the data: the challenge of engaging in leisure activities outside the home for older adults with vision loss.

Methods

A qualitative research approach was used to explore the lived experiences of older adults with acquired vision loss that are specifically related to participation in leisure activities. Older adults with vision loss are a growing population, and these individuals have unique challenges. It is important to hear their stories, experiences, and perspectives to understand the influence of vision loss on their participation in leisure activities.

Purposive sampling was used to select the participants. The study included participants who had best-corrected visual acuities of 20/70 in both eyes, and reported that their vision was fair, poor, or very poor or that they were completely blind on the Visual Functioning Questionnaire-25 that asks how participants rate their eyesight (Mangione et al., 2001; National Eye Institute, 2000).

Adaptation to vision loss occurs over time as demonstrated by higher levels of depression and more challenges to adjustment with recent vision loss (Horowitz, 2004). Therefore, to limit variability due to adjustment and the grieving process, only persons with a vision loss of two years or more were included in the study. The aim of the study was to understand the influence of low vision on participation in leisure activities, yet multiple other medical issues have the potential to affect such participation. In an attempt to limit the number of other health issues that might have been present, the question, "How much would you say your health, separate from your vision, affects your ability to engage in your daily activities?" was used as a screening tool; only individuals who responded "a little" or "not at all" were included in the study. Other criteria for inclusion included an age of 70 years or older and residing in the city or surrounding urban area in which the study took place. Finally, the participants all spoke and understood English and were willing to engage in several interviews and to allow me, the researcher, to observe them.

Referrals of participants who met the basic criteria (visual acuity, time since the diagnosis of vision loss, and self-reported visual status) were all from an eye clinic that primarily serves individuals who live in the city in which the research took place or the surrounding urban areas. Of these referrals, all but four participated in the study. This high response rate was likely due to the screening done by the eye clinic. The four individuals who did not participate did not meet the criterion for overall good health.

Data collection

Data were collected in two face-to-face interviews (see Table 1) and one observation of each participant's engagement in a leisure activity of choice. These observations occurred after the first interview and were important for the triangulation of data, combining the information gained from the observations with the information learned from the interviews to make inferences about the participants' experiences. At the end of the first interview, I stated, "Next time I come, I would like to observe you engaging in a leisure activity of your choice. Do you have an idea of what activity you would like me to observe?" If the participant had no suggestions, I suggested two possibilities, both of which came from leisure activities that the participant spoke about in the interview--one an in-home activity and the other an out-of-home activity--although only a few participants chose an activity that was suggested. In-home activities that were chosen ranged from baking to knitting to hosting a "stamping party," and out-of-home activities included going to a museum, sitting by the water, going bowling, or attending an exercise class. When a participant chose an activity that occurred outside the home, in most instances it was not an activity he or she had engaged in within the past year. I enabled participation by providing transportation, guiding the individual at the site, and reading directions and displays. Through observation of participants during both the in-home and out-of-home activities, I collected rich data on strategies, challenges, and experiences related to participation in leisure activities. The second interview was conducted after the observation and provided a chance for member checking, confirming my insights and inferences.

To summarize, two interviews and one observation occurred. The first interviews ranged from 1 hour and 20 minutes to 2 hours and 30 minutes, while the second interviews were shorter, anywhere from 30 minutes to 60 minutes. Observations varied greatly from 45 minutes to 4 hours. All data collection occurred over a 10-month period. Approval was obtained from the university's institutional review board, and all the participants provided informed consent.

Participants

The participants were 26 older adults with an acquired vision loss of five or more years (n = 21) or 2-4 years (n = 5) who ranged in age from 70 to 92 (mean age = 80) (see Table 2). The majority of participants were female (n = 17), white (n = 19), and living with someone (n = 15) and had at least a high school education (n = 21). The most common eye condition was age-related macular degeneration (n = 11); other participants had diabetic retinopathy, glaucoma, or a combination of these conditions. The participants' best-corrected visual acuities with both eyes ranged from 20/70 to less than 20/1200.

Data analysis

Data from the interviews were audiotaped and transcribed verbatim, and field notes were written within 24 hours of each observation. Corbin and Strauss (2008) emphasize the importance of engaging in data analysis during data collection to enable researchers to redirect and revise interview questions or observations when appropriate. Therefore, I transcribed and carefully read each interview prior to the final interview and adapted the follow-up questions as needed on the basis of the data that were collected.

I used NVivo8, a qualitative software package, to organize and manage the data. The analysis began with open coding, followed by axial coding, grouping the open codes into relevant themes. The coding guided the interview questions and the data from the interview directed the coding. This iterative process occurred throughout the data analysis until saturation of the data occurred.

Results

All the participants spoke of the challenges of engaging in out-of-home leisure activities. One woman (aged 86 with macular degeneration and glaucoma) expressed this sentiment when she stated, "I just stay. I stay put [referring to staying inside] because I don't know where things are." Themes that emerged related to limited leisure activities outside the home included challenging environments, struggling to get there, feeling vulnerable, having decreased energy, and lacking assertiveness.

Challenging environments

Many participants shared stories of environments that were not designed with the needs of persons with vision loss in mind. All the participants made environmental adaptations to engage in leisure activities within their homes. However, the necessary environmental adaptations were rarely available in the community, making it difficult for them to engage in out-of-home leisure activities. For example, all the participants turned on lights and used multiple lights positioned specifically for certain tasks in their homes. Community environments, such as restaurants, were often dim or caused much glare (from decorative exposed bulbs) that made participation difficult. During an observation of a participant at a restaurant, the man (aged 71 with optic neuropathy) suggested placing a light at each table that had three settings so it could be left on low for ambience but turned on high by the individual customer, if needed.

At home, many participants positioned themselves close to a task to engage in an activity (such as directly in front of the television set), yet in the community doing so was not always feasible. When visiting a museum, an 82-year-old woman with age-related macular degeneration (AMD) and cataracts struggled to read the descriptions of the exhibits because the glass around the objects prevented her from getting close enough and took away some of the enjoyment of this type of activity.

Struggling to "get there"

Of the 26 participants, only 1 was still driving, and she limited herself to driving only in the daytime, for short distances, to known locations, and in good weather. Most participants gave up driving several years earlier, all because of their decreasing vision, yet they all still missed driving and the freedom it provided.

Most of the participants were able to access public transportation, although many expressed frustration with doing so. For example, one woman (aged 85 with AMD and glaucoma), waiting for the subway with any group of people, needed to enter through the door closest to where she was standing before the doors closed. Sometimes this door was at the end of the subway car, where she had to navigate two large steps to enter; she found it challenging to do so before the subway doors closed.

Another woman (aged 70 with diabetic retinopathy) took a bus using a specific route that she had taken for years, but she did not travel outside her usual route and used the bus only for appointments and necessary trips. She commented that she could not imagine using the bus for leisure activities because it takes much effort and time to do so. She used the bus when she needed to get to the doctor's office, a place she has traveled to often over the years, but as was clear from her stories, going to the doctor was not an easy outing for her; therefore, using buses for "fun" or "new" events did not feel like an option for her.

The participants shared many stories about paratransit, door-to-door transportation options in their community. These options drop off riders at a building, yet the participants spoke of their struggles to find the correct office or shop once they were dropped off. One woman (aged 80 with glaucoma and uveitis) told of having to wait two hours after her doctor's appointment to get picked up and then riding around in the van for more than an hour to drop off other passengers. By the time she arrived home, she had spent most of the day attending a half-hour doctor's appointment. She was exhausted and frustrated and could not imagine using this mode of transportation for something that was not necessary. Visiting a friend or attending a community event, to her, did not seem worth the effort.

Several participants had family members, neighbors, or friends they could call on to drive them to an appointment, but almost everyone commented that they did not like asking others to drive them places. They felt it was an imposition to do so and thus would ask for a ride only for "important things like doctor's visits." The few who chose to pay someone to drive them places unanimously commented that they would use their limited resources only for rides that were essential. They did not consider leisure activities to be necessary. The challenge of getting there was reinforced through participant observation. Whenever a participant chose an out-of-home activity, my driving was one major factor that enabled him or her to participate.

Feeling vulnerable

One man (aged 82 with AMD) said that he rarely went out of his apartment building, and never in the evening, because he was afraid. Instead he became involved in working on the building task force, staying engaged in activities in what he felt was a safer environment. When he went out, he did not use his white cane, which he believed was an indicator that he was an easy target for being attacked.

Another participant (aged 86 with AMD and glaucoma) stated that she used to walk around her neighborhood but could no longer see the people around her. She heard the voices of people in the streets nearby and became overwhelmed, worrying they would take her purse or purchases. Because of fear, she chose to stay home most of the time and never went out alone spontaneously or for something not necessary, such as leisure activities. For the activity that I observed, this woman chose knitting, an in-home, "safe" leisure activity.

Many straightforward comments emerged from the data related to getting hurt, such as, "I live in great fear of people running, bumping into me." The participants expressed their fear of getting hit by a car if they went outside. They were unable to see all the traffic and moved slowly because of their vision loss and disorientation to the environment. One woman (aged 77 with AMD and cataracts) clearly expressed this fear when she stated, "I don't feel safe on my own outside. … Walking on the street, we don't have sidewalks. Crossing the street, you know the cars go so fast."

Overall, feeling vulnerable limited the participants' ability to do the activities that were important to them. One woman (aged 71 with AMD) commented, "I stopped going downtown. I used to be a lover, believe me, of going downtown to [she named two stores]," and another (aged 87 with diabetic retinopathy and cataracts) stated, "I just gave up going out."

Having decreased energy

The energy required to prepare, get to, and engage in activities outside the home was another factor that limited these individuals' participation in leisure activities. The stories discussed earlier about the effort required to use public transportation are just some examples of the challenges of getting out because of the increased effort it required. The phrases, "It takes too much energy" and "It takes too much out of me" were mentioned repeatedly in reference to engaging in leisure activities outside the home. Many reading materials that provided information about leisure activities outside the home, such as newspapers or the activity list at the housing site, were challenging to use. Although almost all the participants used optical devices to read simple words and phrases, none used this strategy for reading large amounts of information because it required too much effort and time. One woman (aged 92 with AMD) said that she no longer attended church, since "it takes too much work to follow along with the prayers and songs," and therefore attending church was not pleasurable for her anymore.

To a question about traveling, the majority of the participants responded similarly to the man (aged 77 with AMD) who stated, "I love traveling, but it's too difficult. … I mean, this [referring to his vision loss] has limited me severely." The effort required to engage in many activities outside the home often took away the pleasure, and, therefore, many of these older adults rarely left their homes unless it was necessary for them to do so.

Lacking assertiveness

The final theme that emerged from the data was related to assertiveness. As I mentioned earlier, several of the participants did not ask for rides unless they had to get to someplace they considered "important," and leisure activities were clearly not those they deemed important. One woman (aged 82 with AMD) said that she did not get what she wanted since she hesitated to ask. For example, during the observation of her shopping, she never asked for help. She attempted, struggled, and did not always succeed in reading price labels, but unless I asked her directly if she wanted help, she did not ask. Another woman (aged 89 with glaucoma) summed it up when she said, "And then a lot of it I don't even ask them; I feel there's only so much."

Discussion

Gerontologists have long noted that older adults limit their activities outside the home for a variety of reasons, including the fear of falling, limited transportation, dementia, and general aging (Duggan et al., 2008; Porter, 1994; Rantakokko et al., 2009; Vanderbur & Silverstein, 2006). The results of this study show that vision loss is another key factor that limits one's ability to engage in out-of-home activities. Although it appears that the participants "selected out" of leisure activities outside the home because the activities were not within their competence, it is clear that these decisions were not easy or desirable. Environments are challenging to access and do not match the personal factors, most specifically decreased vision for these individuals, thereby preventing their participation in many activities that occur outside the home.

There are numerous ways to decrease environmental demands. Universal design is an approach to creating environments that are usable by everyone, regardless of age or ability. Conventional design aims to meet the needs of the "average" individual, whereas universal design understands that people come in all shapes, sizes, and abilities and aims to address this variability (Ringaert, 2003). Universal design lowers the demands of the environment and facilitates a better fit for persons with vision loss. However, in this study, many participants shared stories of environments that were not designed with the needs of persons with vision loss, such as dimly lit restaurants or glass around objects preventing one from getting close enough to see and enjoy them.

Transportation was another major environmental barrier for almost all the participants, and it limited leisure options for many. Alternative transportation options were limited, and those that were available did not appear to meet the needs of these older adults. Paratransit, though an important service for some of the participants, had several limitations. All the paratransit services that were discussed by the participants were "curb-to-curb" services, which pick up a person at his or her house (or other location) and drop the person off at a place of choice (such as a doctor's office). More recently, some agencies have been exploring "assistive transportation," also called "arm-to-arm," "chair-to-chair," "door-to-door," or "door-through-door" services, which include assistance at the destination, rather than to it (the door of a doctor's office versus the building in which the office is located) (Vanderbur & Silverstein, 2006). This assistance would eliminate the barrier of finding the office once one is dropped off outside the building, for example, and would possibly better meet the needs of individuals with visual impairments.

In a program evaluation of a naturally occurring retirement community (NORC), researchers found that although the older adults stated that they struggled with mobility in the community, they rarely used the bus that was provided for grocery shopping (Opp, 2009). As did the participants in my study, the older adults who lived in the NORC found ways to get food (obtaining rides from others or having family members buy items for them); rather, what they wanted and needed were rides to cultural and social events. These were the circumstances when they needed transportation yet did not feel comfortable asking others to help with this "optional" activity (Opp, 2009). The older adults with vision loss who participated in my study felt comfortable asking for assistance only with essential needs, and no one considered leisure activities to be essential. Yet evidence shows that there is a relationship between engaging in leisure activities and decreased depression (Menec & Chipperfield, 1997), decreased mortality (Lennartsson & Silverstein, 2001), the delay of the onset of cognitive deficits (Karp, Paillard-Borg, Wang, & Silverstein, 2006; Richards, Hardy, & Wadsworth, 2003), and successful aging for older adults (Rowe & Kahn, 1998), clearly indicating that engaging in leisure activities is essential to health and well-being.

Evidence is also beginning to demonstrate ways to help people with vision loss build personal competence (such as self-management groups) (Girdler, Boldy, Dhaliwal, Crowley, & Packer, 2010), ideally leading to the continued engagement in leisure activities that occur outside the home. An important component of self-management groups is the group process and the support that people receive from others with vision loss (Gallant, 2003). Support groups are another forum for persons with vision loss to receive much-needed support. Often organized and facilitated by state agencies, such as the Commission for the Blind, these groups provide opportunities for people to share strategies, experiences, information, and encouragement (Dreer & Broadfoot, 2011).

Vision rehabilitation interventions address the goals of increased independence. Strategies typically include teaching the use of low vision devices (such as optical and nonoptical devices), teaching the use of senses other than vision (like tactile or auditory strategies), and adapting the home environment (Scheiman, Scheiman, & Whittaker, 2007; Warren & Barstow, 2011). Although a variety of therapists (including occupational therapists, orientation and mobility specialists, vision rehabilitation therapists, and low vision therapists) address safe mobility and independence in the community in IADLs, those who provide services to older adults with vision loss should work with their clients to explore ways to facilitate participation in leisure activities in the community as well. Advocating for features that increase access and participation, addressing safety, exploring ways to conserve energy, and practicing assertive communication are all important components of a comprehensive vision rehabilitation program.

The findings of this study support aging communities that provide services for IADLs, including cooking, cleaning, and banking. Story after story emerged from the data regarding the amount of time and energy that were required to perform IADLs, with little time or energy for leisure activities. Many aging communities include one meal a day and housekeeping services, services that save residents time and energy. These communities often have many leisure activities available and accessible, encouraging residents to use their "saved" time and energy for leisure and other social activities (Brecht, 2009).

Although all the interview questions focused on engagement in leisure activities, and follow-up questions were often used to direct the response back to such activities, many participants commented about IADLs that are performed outside the home (such as shopping and going to doctors' appointments). The participants did not refer to these activities as chores but, rather, as "important," necessary, and desirable activities. Inherent in these activities are opportunities to socialize, talk with others, and stay current. It is worth exploring further the meaning of these "necessary activities" to consider if leisure needs are met by these daily chores.

Qualitative research, by its nature, includes small sample sizes. Although using 26 participants was adequate to achieve saturation of the data for the study, it was impossible to compare the results by gender, race, age, or vision loss because of the small number of participants in each group or to generalize the results to other groups. Also, one main referral source--an eye clinic that services primarily urban individuals--was used. Therefore, all the participants had access to vision services. Data were not collected on individuals who are unaware of or unable to access these services, and these may be individuals who do not get out of their homes even for some "essential" visits, such as doctors' appointments. Further exploration of these "missing" data is warranted. In general however, a diverse group of participants provided extensive data for the analysis of this study.

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Sue Berger, Ph.D., OTR/L, BCG, FAOTA, clinical associate professor of occupational therapy, College of Health and Rehabilitation Sciences, Boston University, 635 Commonwealth Avenue, Boston, MA 02215; e-mail: <sueb@bu.edu>.


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