Abstract
Low vision is permanent vision loss from a condition or disease that cannot be corrected by eyeglasses or medical intervention and that interferes with completion of activities of daily living (ADLs; National Eye Institute, n.d.). Adults age 80 and older account for nearly 70% of cases of low vision and blindness in the United States (Congdon et al., 2004). Because older adults also experience high rates of chronic diseases, the majority of older adults with low vision have at least one other chronic medical condition that also contributes to limitations in daily activities (Crews, Jones, & Kim, 2006). Low vision has been shown to interact synergistically with other prevalent chronic conditions in older adults to increase the risk of activity limitation beyond that caused by either condition alone (Crews et al., 2006; Fried, Bandeen-Roche, Kasper, & Guralnik, 1999).
To obtain optimal client outcomes in older adults with low vision, occupational therapy practitioners need to understand how clients’ comorbid chronic conditions influence intervention and outcomes. Whitson et al. (2011) provided a preliminary framework to address the concurrence of chronic conditions and low vision based on qualitative interviews with visually impaired older adults receiving low vision rehabilitation services. However, to date, it is not known how often occupational therapy practitioners encounter comorbidities in their low vision clients, which comorbidities are most prevalent, or how practitioners perceive the influence of comorbidities on low vision intervention. The purpose of this mixed-method study was to gain a better understanding of how vision loss and comorbid chronic conditions influence occupational performance in older adults with low vision and occupational therapy intervention in low vision rehabilitation.
Method
A mixed-method design using qualitative and quantitative approaches was selected because it is particularly useful when exploring new research questions with complex factors, contexts, and interactions (Creswell, Fetters, & Ivankova, 2004). We surveyed occupational therapists with expertise in low vision rehabilitation to determine the prevalence and types of comorbidities they encountered in clients with low vision and their perceptions of the influence of comorbidities on the intervention process. We also conducted individual interviews with older adults with low vision to gain their personal perspectives on how low vision, independently and in combination with other chronic conditions, influenced their ADL performance.
Participants
We sent an email invitation to participate in a quantitative survey to 113 occupational therapists who had self-identified on occupational therapy online discussion forums and at national conferences as low vision practitioners. The single inclusion criterion was direct provision of rehabilitation services in any setting to older adults with low vision from age-related eye disease on at least an as-needed basis for 1 yr or longer. We used purposeful sampling procedures to recruit older adult participants. Inclusion criteria included age 65 yr or older, confirmed diagnosis of low vision from an age-related eye disease, self-report of at least one other chronic health condition, and no more than mild risk for impaired cognition based on scores on the Short Portable Mental Status Questionnaire (SPMSQ; Pfeiffer, 1975). The SPMSQ is a widely used, reliable, and valid tool for assessing risk for cognitive impairment in older adults and does not require the use of vision. The questionnaire consists of 10 questions, and higher scores indicate increased risk for cognitive impairment; a maximum score of 6 was set for study inclusion.
The clinic staff at an outpatient low vision clinic in an urban area in the southeastern United States identified potential participants through chart review and self-report; we contacted these people via telephone to explain the study and schedule an initial visit. The university’s institutional review board approved the study, and all participants provided informed consent.
Data Collection
We disseminated an anonymous online survey to the occupational therapists through SurveyMonkey (SurveyMonkey, Palo Alto, CA). Our emailed invitation contained a link to the survey page, and the participant provided consent by checking the next button after reading the study description and instructions. The survey contained 28 multiple-choice questions: 6 questions about professional qualifications as a low vision specialist, 7 questions about the prevalence of comorbid chronic health conditions in clients, and 15 questions about the effect of these conditions on occupational therapy intervention.
For the questions addressing prevalence, we used the General Health Questionnaire (GHQ) to generate a list of 17 chronic health conditions common in older adults. The GHQ is a nonstandardized self-report tool developed by the University of Alabama at Birmingham's Department of Ophthalmology Clinical Research Unit. We developed the questions on how chronic health conditions influence occupational therapy intervention using the findings of a qualitative study by Whitson et al. (2011) on the influence of comorbidity on occupational therapy low vision rehabilitation programs.
Five trained occupational therapy graduate students (including authors Thaker, Hallman, and Batts) conducted the client interviews. The students were trained through a series of hands-on sessions by a faculty member (Barstow) with expertise in qualitative interview methodology. During the initial visit, the interviewers obtained informed consent from clients and screened them for inclusion using the GHQ to confirm the presence of at least one comorbid condition and the SPMSQ to determine risk for cognitive impairment. Use of the GHQ in both portions of the study allowed for comparison of the study data.
Eligible participants with low vision completed one face-to-face semistructured interview in their own home. We formulated open-ended questions from existing research on the influence of vision loss and comorbidities on occupational performance; questions moved from general to specific. The protocol was pilot tested on one older adult with low vision, and the questions were modified for clarity. Each interview was tape recorded and transcribed verbatim. Field observation was used as a second data collection procedure; each participant was observed engaging in one routine ADL in a usual location. As part of the observation protocol, interviewers hand drew a picture of the ADL environment and recorded objective and subjective field notes.
Data Analysis
Survey results were analyzed using descriptive statistics to report frequency counts and percentages. Interview and observation data were analyzed using content analysis to identify emerging themes. Two of five trained occupational therapy graduate students (including Thaker, Hallman, and Batts) independently coded each interview transcript and compared transcripts to ascertain intercoder agreement. Observations were used to expand on emerging themes and verify the data from the interviews. Data were independently analyzed and then compared and contrasted to develop overall study conclusions.
Results
Practitioner Survey
Fifty-nine occupational therapists completed the survey, yielding a 52% response rate. Table 1 lists the demographic characteristics of the sample. All geographic areas of the United States were represented. The majority of the respondents were female (96%) and had more than 10 yr of clinical experience (75%). A third of the respondents reported more than 10 yr of experience in low vision rehabilitation. The respondents reported that most of their clients were White (90%), had age-related macular degeneration (88%), were age 75 or older (72%), and were of middle (72%) or low (28%) income.
Demographics of the Practitioner Survey Sample (N = 59)
Percentages total >100 because some practitioners indicated multiple primary practice settings.
Respondents estimated that 43% of their clients had one or more comorbidities that interfered with ADLs. The most frequently reported comorbidities were diabetes (reported by 66% of therapists), cardiovascular problems (54%), arthritis (49%), hearing impairment (36%), depression (32%), and stroke (22%). Table 2 lists the chronic conditions reported by the respondents and the low vision participants. In addition, more than a third of the occupational therapist respondents estimated that 50% or more of their clients had fallen at least once in the previous year and that three-quarters of their clients were at risk for falls.
Participants’ Comorbid Chronic Conditions
Respondents were asked to select the three chronic conditions from the GHQ that most lowered their expectation that clients would achieve acceptable therapy outcomes. Eighty percent of the occupational therapists reported having encountered all the conditions in clients at some time during their low vision practice. They identified dementia (30%), depression (20%), and diabetes (17%) as the three most debilitating comorbidities, followed by hearing impairment (9%), stroke (9%), and a falls history (5%). The therapists identified cardiovascular disease (31%), arthritis (15%), and digestive problems (10%) as the three chronic conditions that least affected intervention outcomes.
Occupational therapists were queried about how the co-occurrence of a chronic condition influenced the intervention process. Three-quarters of the respondents reported that an additional chronic condition increased the number of sessions needed to achieve the intervention goals. Just over half of the respondents stated that more time was required for each treatment session and that sessions were more frequently cancelled. Just over 70% of the respondents stated that more interaction with and dependence on the caregiver was required to ensure that goals were achieved. Two-thirds of the respondents reported that comorbidities increased the need to provide a home visit.
Nearly 60% of the occupational therapists reported a greater need for case coordination with other health providers; all but 1 participant reported having to refer a client to another health care provider to address a comorbid condition. Most referrals were made to psychologists or counselors (31%), followed by physical therapists (27%), physicians (17%), and diabetes educators (10%). Most respondents reported that they infrequently (56%) or never (19%) provided adaptive equipment to address a comorbid condition and that most of the recommended equipment addressed safety issues: Approximately 62% of the respondents had recommended grab bars; 60%, tub or shower benches; and 42%, nonskid surfaces. Several respondents reported having to modify adaptive equipment issued for a comorbidity to increase the visibility of key structures so their client could safely use the equipment.
Client Interviews and Observations
The client sample comprised 8 White older adults with age-related macular degeneration (6 women and 2 men). The mean age was 79 yr (range = 66–92). They most frequently reported the comorbidities of arthritis, hypertension, and cancer (see Table 2). Client interviews and observations revealed three themes regarding low vision and comorbidities: (1) occupational performance, (2) effects of vision loss on emotional well-being, and (3) compensatory strategies. These themes were derived through 90% intercoder agreement.
Occupational Performance.
Occupations are “activities that people engage in throughout their daily lives to fulfill their time and give life meaning” (American Occupational Therapy Association [AOTA], 1997, p. 865). Occupational performance includes participation in ADLs, instrumental activities of daily living (IADLs), rest and sleep, education, work, play, leisure, and social participation (AOTA, 2014). The client participants reported separate influences of low vision and comorbidities on occupational performance, which were confirmed by observing the participants complete routine occupations. Two subthemes emerged: (1) the influence of vision loss on occupational performance and (2) the influence of comorbid conditions on occupational performance.
Client participants reported that vision loss most greatly influenced independent and safe participation in ADLs and IADLs, leisure pursuits, social participation, and work. They reported declines in their ability to complete ADLs independently and in a timely fashion. One participant reported her difficulty in completing grooming, stating, “I used to see how to do my hair, but it takes me probably twice as long to do it . . . so doing my hair is a major problem now.” Participants also discussed difficulty in completing IADLs. Several reported having to cease aspects of IADLs such as financial management and meal preparation. One participant described how vision loss had influenced her ability to prepare a meal: “Well, I can’t cook. . . . I can’t tell when my food’s cooked. I made spaghetti one night and put barbecue sauce on it.”
Vision loss also negatively influenced participants’ participation in leisure activities, such as attending church or going shopping, and work. A music teacher who was forced to give up teaching because she could no longer see sheet music stated, “I had to stop teaching because I couldn’t see the finger numbers on the music.” Last, participants reported difficulty with social engagement during participation in all occupations because of vision loss. One participant described why she no longer attended church as follows: “I do not recognize people that speak to me. . . . It’s embarrassing.”
Participants reported that comorbidities independently influenced their occupational performance, specifically participation in ADLs and IADLs, social participation, and leisure pursuits. Some ADLs, such as dressing and toileting, were increasingly difficult with comorbidities that affected physical ability. One participant with back pain stated, “Well, you bend down to put on your diapers; you bend down to put on your shoes. . . . All of this is a problem for me.” The same participant reported how her back pain created difficulties completing IADLs: “Now I’m having them begin to cook because I’ve got a bad back, and it’s hard for me to stand up.” Like vision loss, comorbidities negatively influenced social participation. A female participant explained the influence of hearing loss on her participation in leisure activities at her assisted living facility as follows: “Really, I am a social person, . . . but I just can’t participate. . . . Part of it is due to my hearing.”
In summary, participants with low vision reported that vision loss and comorbidities each independently influenced their ability to engage in ADLs, IADLs, leisure pursuits, and social participation. They also reported that vision loss, but not comorbidity, influenced their ability to participate in work.
Effects of Vision Loss on Emotional Well-Being.
Interview data revealed that all participants with low vision experienced decreased emotional well-being because of vision loss but not comorbidity. Participants discussed the ways vision loss had affected their emotional well-being and the ways they had adapted to their issues. Two subthemes emerged within this theme: (1) emotional expression and (2) emotional adaptation.
Emotional expression was defined as expressions of grief and emotional response to vision loss. The majority of the participants expressed difficulty adjusting emotionally to the influence of vision loss on their lives. One participant shared her grief in giving up her valued occupation of teaching music, stating, “When I had to stop teaching, . . . that just broke my heart. I loved the children, loved the young ones.” Another participant stated, “It’s a grieving process, there’s no doubt about it. I grieve for laughs. . . . Watching my granddaughter in gymnastics, cheerleading competition . . . I can’t see her when she’s out there performing. . . . I grieve for those times.”
Emotional adaptation was defined as expressions that illustrate the actions participants took to adapt to vision loss and cope with grief and loss issues. Many participants expressed focusing on the positive despite their vision loss. One participant explained,
It’s something I didn’t ask for. But now that I got it [vision loss], so how am I going to try to overcome it? You can’t sit there and mope and cry about it; you got to pick yourself up and try to help yourself. It’s like learning to walk again. Like I said, you have to have the determination.
Another participant concentrated on existing skills, reporting, “I’m just so fortunate to still be able to see what I can see. I miss being able to see what I can’t see now, but I count my blessings every day.”
In summary, participants reported that vision loss had greatly influenced their emotional well-being. Issues of grief and loss were consistently attributed to vision loss but not to comorbidity. These participants revealed their emotional adaptations to these issues in statements focusing on remaining skills and positive thinking.
Compensatory Strategies.
The last emergent theme was the use of compensatory strategies. Compensatory strategies were defined as environmental or behavior adaptations made to the usual method of completing a familiar task. Two subthemes emerged: (1) strategies used to compensate for vision loss and (2) strategies used to compensate for comorbid conditions.
Strategies participants reported using to compensate for vision loss included use of adaptive equipment, environmental modification, and alteration of routines and habits. Several participants reported using handheld and electronic magnification to complete activities requiring reading and writing. Environmental modification was used to improve the visibility of existing structures and task components. One participant reported modifying the environment to enhance the visibility of a stairwell: “I have trouble with contrast . . . and so, since the steps are all exactly the same color, . . . we put rubber pads on them so I can see where the one step is and the other begins.”
Participants also reported that vision loss affected their daily routines, prompting changes in routines and habits to remain independent and enhance safety in occupational performance. One participant reported restricting driving according to time of day and weather conditions, stating, “I can see to drive places that I’m familiar with if it isn’t raining or at night.” Another participant formed a new habit to successfully set washing machine dials by relying more on tactile sense than vision. She stated, “So far, I’m not having any trouble with the washing machine because both the buttons I need are on the right side. . . . They actually are raised a little bit, so I don’t have a problem with that so far.”
Strategies participants reported to compensate for comorbidities included use of adaptive equipment and alteration of routines and habits. The majority of participants reported using adaptive equipment to compensate for various comorbidities, such as using bathtub grab bars to maintain balance. Other participants discussed changing daily routines and habits because of comorbidities. One participant stated, “We have caretakers that come in and out, a variety of them. Now I’m having them begin to cook because I’ve got a bad back, and it’s hard for me to stand up.”
In summary, participants were more likely to use strategies to compensate for vision loss than for comorbidities but reported using adaptive equipment and changing habits and routines for both conditions. Participants also identified environmental modification to enhance the visibility of structures as an important compensatory strategy for vision loss.
Discussion
The comorbidities most frequently experienced by the participants with low vision and encountered by the occupational therapists were arthritis, cardiovascular conditions, and hearing impairment. These three chronic conditions are highly prevalent in older adults and interact synergistically with low vision to greatly increase the odds of a person experiencing limitations in occupational performance (Crews et al., 2006). Only 6 therapists reported that these conditions substantially interfered with occupational therapy intervention, however. The participants with low vision acknowledged that joint problems and hearing loss interfered with occupational performance but indicated that they had found solutions to managing these conditions, suggesting that successful solutions can be found for occupational limitations from these commonly occurring conditions.
The occupational therapists identified dementia as the condition that most influenced intervention outcomes. Although only 5% of the respondents identified dementia as a common comorbidity in their low vision clients, one-third acknowledged that its presence would adversely affect client outcomes. This perception is consistent with research showing that cognitive impairment may limit the effectiveness of occupational therapy low vision rehabilitation (Whitson et al., 2011, 2012). Lawrence, Murray, Ffytche, and Banerjee (2009) conducted in-depth interviews of professionals, including occupational therapists, who provided services to older adults with severe vision impairment and dementia. The professionals voiced concerns about clients’ safety in completing ADLs because low vision impaired their ability to complete occupations, whereas dementia impaired their ability to use compensatory strategies or assess risk when engaging in high-risk ADL tasks such as community mobility or stove use. Some professionals expressed concern that the perception of elevated risk led to an overly cautious approach that limited clients’ participation in daily activities.
Whitson et al. (2012) found that visually impaired adults with memory deficits showed worsening functional trajectories in some ADLs while receiving occupational therapy low vision rehabilitation services. Whitson et al. (2013) also found that adults with mild cognitive impairment benefitted from an occupational therapy low vision rehabilitation program specifically designed to address the cognitive impairment in conjunction with the vision impairment. The program addressed cognitive limitations by providing twice-weekly sessions that incorporated teach-back methods and customized handouts to reinforce learning, providing sessions in distraction-free environments, limiting the intervention plan to three goals, and involving a companion or caregiver in the rehabilitation process.
Occupational therapists identified depression as the second leading comorbidity that would influence intervention outcomes, and nearly a third of the respondents placed it among the three most common comorbidities encountered in clients with low vision. Depression is very common in older adults with low vision, with a reported prevalence of almost 70% (Crews et al., 2006). The effect of vision loss on emotional well-being was a major theme to emerge from the qualitative data. All of the participants with low vision discussed the ways in which vision loss influenced their emotional well-being and their strategies for coping and addressing grief and loss. They also specifically attributed struggles with emotional adaptation to living with vision loss but not to living with comorbidity, suggesting that occupational therapy practitioners should screen for depression and actively address adjustment issues as part of the low vision intervention.
Finally, results indicate that although comorbidities influenced participation in daily activities for this cognitively intact group, vision loss exerted more influence on independence and safety. The participants with low vision emphasized that vision loss, not comorbidity, was the primary factor limiting all areas of their occupational performance and that only vision loss negatively influenced participation in work and volunteer opportunities. However, they also acknowledged the need to use compensatory strategies to address both conditions. They identified adaptive equipment and modification of routines and habits as important compensatory strategies for both conditions and specifically identified modifications to increase the visibility of the environment as important to compensate for vision loss. Many of the participants discussed how they enlisted caregivers or family members to assist with activities they were no longer able to complete.
Comparison of quantitative to qualitative results revealed alignment in several aspects of occupational therapy intervention. Occupational therapists reported an increased need for case coordination and referral to other providers, especially psychologists or counselors. This identified need aligned with the needs of the participants with low vision, as reflected in the emergence of psychosocial expression and adaptation as a qualitative theme. The respondents reported that the presence of comorbidities increased the need for home visits, a need also aligned with the needs of the participants with low vision, who identified environmental modification as an important compensation strategy. Finally, they reported that low vision, in conjunction with comorbidities, increased the need for caregiver involvement to reinforce carryover of new learning and assist with activities the client could no longer complete independently. This report again aligned with the reports of participants with low vision of a need to change habits and routines with all conditions by using the assistance of a caregiver. Whitson et al. (2011) identified similar benefits of caregivers in their qualitative study of the influence of comorbidities on outpatient low vision rehabilitation.
Study Strengths and Limitations and Future Research
One strength of this study is that it included perspectives on the influence of comorbidities on occupational performance from both occupational therapists and people with low vision. Inclusion of both perspectives provided a more holistic understanding of the interplay between chronic conditions and low vision in occupational performance. In addition, the investigators who independently coded the qualitative data achieved 90% agreement for the three themes and confirmed interview content through observation, supporting the credibility of the data analysis. Finally, occupational therapists from all geographic areas of the United States were surveyed.
Limitations include recruitment of participants with low vision from only one center and one geographic area, reducing the transferability of study results to all people with low vision. In addition, the participants with low vision had comorbidities that the occupational therapists reported could be managed more successfully than low vision, which may have heightened the participants’ perception that low vision exerted the greater influence on occupational performance. The quantitative survey addressed only the influence of comorbidity on intervention, and not specific ADL limitations or intervention strategies, making it difficult to compare the quantitative and qualitative data.
Future research should investigate the complex synergism between low vision and comorbidities. Practitioners could be interviewed qualitatively to add depth to their perspectives on the phenomenon, or surveys could be expanded to be more inclusive of low vision interventions. Additionally, the interviews and observations could be expanded to include older adults with more severe comorbidities and to expand the geographic settings to enhance transferability of the findings.
Implications for Occupational Therapy Practice
To optimize occupational performance outcomes for clients with low vision and comorbidities, occupational therapy practitioners should do the following:
Provide at least some intervention in the clients’ home environment
Screen clients for depression and address psychosocial adjustment to vision loss
Collaborate with and refer clients to other rehabilitation providers, particularly mental health professionals
Adjust visits as appropriate, expect cancellations, and recognize that clients will require increased session time and frequency
Solicit and enhance caregiver involvement
Address both vision loss and comorbidities to enhance safety
Expect deficits in ADLs, IADLs, social participation, leisure involvement, and work
Apply compensatory strategies that include environmental modification, adaptive equipment, and modification of habits and routines.
Conclusion
Older adults with vision loss and comorbidities have unique characteristics that influence occupational therapy service provision. Occupational therapy practitioners specialized in low vision and older adults living with low vision are aware that comorbidities must be addressed to obtain optimal client outcomes in occupational performance. Key aspects of the intervention process must be modified, including increasing the number, frequency, and length of sessions; providing at least one home visit; and increasing case coordination and referral to other health professionals. Working with caregivers and family members to support and assist clients’ efforts to remain independent is a critical aspect of intervention.
The high prevalence of age-related eye disease and other chronic health conditions in adults over age 80 coupled with the increasing growth of this population means that more occupational therapy practitioners will be providing services to older adults who have low vision and comorbidities. Occupational therapy’s broad entry-level education in aging and disability, when enhanced with specific education in low vision rehabilitation, uniquely positions practitioners to address issues of aging with vision loss and maximize outcomes for this client population. Thus, all occupational therapy practitioners should have educational preparation in the basic principles of low vision rehabilitation to prepare them to provide effective interventions to older adults with low vision.
Footnotes
Acknowledgments
The authors appreciate the assistance of Mary Christin Camp, Rebecca Fehr, Brittany McGee, Victorie Smith, and Lindsay Warren, all of whom were students in the Department of Occupational Therapy, University of Alabama at Birmingham, at the time of the study.