Understanding of how older adults with low vision obtain,process, and understand health information and servicesHyung Nam Kim, PhD

North Carolina Agricultural and Technical State University, Industrial and Systems Engineering, Greensboro, NorthCarolina, USA

ABSTRACTIntroduction: Twenty-five years after the Americans with Disabilities Act,there has still been a lack of advancement of accessibility in healthcarefor people with visual impairments, particularly older adults with low vision.This study aims to advance understanding of how older adults with lowvision obtain, process, and use health information and services, and to seekopportunities of information technology to support them. Methods: A con-venience sample of 10 older adults with low vision participated in semi-structured phone interviews, which were audio-recorded and transcribedverbatim for analysis. Results: Participants shared various concerns in acces-sing, understanding, and using health information, care services, and multi-media technologies. Two main themes and nine subthemes emerged fromthe analysis. Discussion: Due to the concerns, older adults with low visiontended to fail to obtain the full range of all health information and servicesto meet their specific needs. Those with low vision still rely on residualvision such that multimedia-based information which can be useful, but itshould still be designed to ensure its accessibility, usability, andunderstandability.

KEYWORDSAccessibility; aging; assistivetechnologies; healthinformation; low vision

Introduction

In the United States, 21.2 million adults are visually impaired,1 and approximately 3% of individualsaged 6 years and over have difficulty seeing letters in ordinary newspaper print even if wearingglasses or contact lenses.2 Low vision is defined as the best-corrected visual acuity equal to or betterthan 20/400 and worse than 20/70 in the better seeing eye.3 Each year 75,000 more Americans areexpected to become visually impaired4; many of whom were born with intact vision but lost theirvision due to eye diseases or health conditions.5 As the population ages, it is anticipated that age-related eye diseases will dramatically increase the number of Americans with visual impairmentsover the next 30 years.4 In 2006, one of every six Americans older than 70 years was visuallyimpaired; his figure doubled among individuals 80 years or older compared with those in theseventies.6 Low vision is particularly prevalent among older adults7 with two-thirds of individualswith low vision being older than 65 years.8

Twenty-five years after the Americans with Disabilities Act (ADA), there has still been a lack ofadvancement in healthcare for people with visual impairments associated with healthcare facilities,equipment, health promotion, and disease prevention programs,9,10 leading to poor health outcomesand decreased quality of life.11 The latest report from the National Academies of SciencesEngineering and Medicine12 shared the concern that many public health agendas and communityprograms have paid little attention to visual impairments. When individuals with visual impairmentswere asked to describe their own health status,13 almost 95% reported at least one health problem,

CONTACT Hyung Nam Kim, PhD [email protected] North Carolina Agricultural and Technical State University, Industrialand Systems Engineering, 1601 East Market Street, Greensboro, NC 27411, USA© 2017 Taylor & Francis

INFORMATICS FOR HEALTH & SOCIAL CARE2019, VOL. 44, NO. 1, 70–78https://doi.org/10.1080/17538157.2017.1363763

and 45% rated their health as fair to poor, which is significantly higher than the general U.S.population.14 Older adults with low vision are more likely to suffer from depression, anxiety,diabetes, heart disease, and stroke as compared with the general older population without visualimpairments.11,15 Those with visual impairments often encounter poor communication with physi-cians, limited transportation options, and inaccessibility of health information.16 In particular, theinaccessibility of health information leads to multiple negative consequences, including compromis-ing patients’ privacy, loss of independence, safety issues (e.g., misreading medicine labels), andmissed appointments.17,18 Access to health information should be equally available to everyone,which would empower those with visual impairments to make personal, confidential decisions abouttheir own healthcare. Thus, it is important to empower those with visual impairments in obtaining,processing, and understanding relevant health information to secure benefits from the healthcaresystem as much as do sighted people. As the target population for this study is one who is visuallyimpaired, obtaining information (i.e., accessibility) is very important. Yet, very little attention hasbeen given to the elderly who have visual impairments, particularly low vision. The aim of thisresearch is to examine the experiences (e.g., challenges, concerns, and needs) of older adults with lowvision when obtaining, processing, and understanding health information, and seek opportunities ofinformation technology to address them.

Methods

Participants

This study recruited participants with support from local organizations for people with disabil-ities, including low-vision groups of the local senior centers, independent eye-care professionals,assisted living facilities, and disability resource centers. Recruitment flyers in large print wereshared with the local organizations. Those organizations informed older adults with low vision intheir community about the research participation opportunity. Potential participants who wereinterested in participating in the study contacted the research team. This study was conducted inthe United States. A research participant in this study was also allowed to personally introducethis study to his or her peer colleague(s) with low vision. A convenience sample of 10 olderadults with low vision (mean age = 71.2 years) participated in the study who met the followingeligibility criteria: English speaking, 65 years old or older, and visual acuity of 20/400.3 Theexclusion criterion was individuals with hearing impairments that are severe enough to interferewith the phone interview. Visual acuity of participants was self-reported. Further characteristicsof the participants are given in Table 1. Approval for this study was obtained from the institu-tional review board.

Procedure

A semi-structured interview was administered by phone for each participant. The telephone inter-view is an appropriate method for this study because of multiple advantages.19–21 First, it is easy toreach the target participants, that is, older adults with visual impairments who cannot drive anylonger and have a limited transportation option. The telephone interview can remove such atransportation barrier, which would give everyone an equal opportunity to participate in thestudy. Second, the participants can conduct the interview at home where they feel much morecomfortable and safe. This semi-structured interview was open, allowing new questions or follow-upquestions to emerge during the interview as a result of what the interviewee said. The well-knowninitiative, Older Adults – Healthy People 202010 provided valuable insights, contributing to a set ofsample questions including: “What types of health information have you used?,” “How have youobtained health information?,” “How have you used health information?,” and “How have you usedassistive technology or the Internet in obtaining health information?.” There was one interviewer

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and the interview lasted 30–60 min. All interviews were audio-recorded, and a professional tran-scriber subsequently transcribed verbatim for analysis.

Data analysis

Qualitative data analysis aims at investigating a small set of data without isolating variables butstudying the interconnection of each to produce critical insights that are typically not covered inquantitative data analysis. As deductive content analysis is typically used in cases where a researcherwishes to retest existing data in a new context or test a previous theory in a different situation, thepresent study relied on inductive content analysis that focuses on the process of exploring thephenomenon via a sample of data such as observation and interviews.22–24 The interview transcriptswere analyzed using grounded theory24 by conducting open coding, axial coding, and selectivecoding as many other studies take advantage of the grounded theory approach.25,26 The open codingprocess was to break down the data into segments to interpret them. The axial coding step was to puttogether the data by regrouping and making links. The selective coding process was to select aprimary group and relate it to other groups.

With regard to data saturation, the content analysis was performed immediately after eachinterview to examine the degree to which new themes are identified.27 Of the codes, 74% wereidentified within the first three interview transcripts. Thus, a small number of new codes (i.e., 26%)were identified in the rest of interview transcripts.

Results

Older adults with low vision can still rely on their residual vision such that visual information is stillone of the critical resources for their healthcare. As those with low vision recognized that they wereoften not sorted in traditional categorizations, that is, people with and without blindness, those withlow vision were concerned that their needs were less likely to be taken into consideration indesigning accessible health information. This study has explored as to how older adults with lowvision obtain, process, and understand health information and services. The research participantsdiscussed the perceived facilitators and barriers to health information and services, which have beenbroken down into two main themes and nine subthemes. An inter-rater reliability analysis usingCohen’s kappa statistic was performed to determine consistency between the two raters. There was

Table 1. Characteristics of the participants.

Participants N = 10

Age (years) 71.2Gender (female) 10Race/ethnicityEuropean American 7African American 3

Education levelHigh school graduate or equivalent 3Some college of technical training 2College degree 2Advanced degree 3

Household income<$20,000 7$20,000–$39,999 1$40,000–$59,999 1$60,000–$79,999 1

Marital statusMarried 5Divorced 5

Visual acuity Between 20/200 and 20/400

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substantial agreement among the raters as the inter-rater reliability was found to be κ = 0.77 (95%CI: .657 to .887), p < .0005.

Theme 1: Obtain health information

Healthcare service providers not providing health information in alternative formatsThe older participants with low vision tended to encounter a lack of support from their healthcareproviders in that health information in alternative formats (e.g., audio, electronic, or large printversions) was often unavailable to them. One participant pointed out that even her eye doctor couldnot give her information in large print: “I went to the ophthalmologist. I was given a short survey formwhile waiting. It was in a very small font. So, I said, ‘Why don’t you put this in large print? You know,you are the ophthalmologist.’. . .They said no. So, I feel like I could not survive anywhere.”

Consumers not asking for information in accessible formatsAnother barrier was that the older participants with low vision were less likely to ask for informationin alternative formats. Those with low vision simply assumed that their healthcare providers do nothave a special printer to prepare materials in large print; that their providers are less likely to makeadditional effort to work all over again to prepare alternative format materials; and that providerswould provide information in alternative formats if those with low vision carried a white cane orused others’ arm: “I never thought about asking my primary doctor if I can get information in largeprint” and “I am sure if it was obvious, like if I had somebody holding my arm or leading me, or if Ihad a guide dog, I’m sure they would ask if I needed an alternative format.”

Multimedia health informationThe older participants with low vision obtained health information from various sources includingthe Internet, TV, and family. As those with low vision could still rely on residual vision, they usedvarious assistive technology applications (e.g., screen enlargement applications, screen readers, andvoice recognition programs) when seeking health information online: “I use the adjustment on mycomputer, and my screen is magnified to make it easier to read.” Those with low vision also tookadvantage of TV because it is accessible and easy to use. They particularly paid attention to health-related commercials or health channels: “I was trying to find something that was suitable to my[health] conditions. I just look in the TV guide and watch different programs that have healthinformation.”

Theme 2: Process and understand health information

Difficult to readThe older participants with low vision encountered a challenge of reading small fonts, such as druglabels. Thus, those with low vision used assistive devices (e.g., magnifiers) or tried to distinguishmedicines and bottles by color and shape: “I take my black marker and mark on the bottles. Maybethis is one, this is two, and I remember by putting the numbers on the bottle or maybe making blackmarks, like a X or something round.” Sometimes those with low vision relied on other persons, butworried about losing their independence. Those with low vision were also concerned about informa-tion printed in a large font because it was too big to see the whole image or concept: “Some peoplecannot read large print materials either. Personally, I cannot usually read large print ones because I donot see well enough.”

Unusable and unaffordable assistive technologyAlthough those with low vision were aware that various assistive technology applications areavailable, they were concerned about the price and poor usability of those applications: “There areno health brochures that are enlarged that much, so I cannot use them, but I can access almost

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anything I want on the Internet, but it takes more time to find it and more time to read it because Ihave to use assistive devices for everything. It’s not user-friendly. I was able to try this [assistivetechnology application] out, but it is $500 device. It is very expensive!”

Inaccessible and poor adherence to exercise programsDue to a limited transportation option to a community center or uncomfortable feelings ofparticipating in a group exercise program, the older participants with low vision considered doingexercise at home alone, but were then worried about poor adherence to home-based exerciseprograms. For instance, the following excerpt highlights the preference of participating in anexercise program offered by a local senior center: “We all sit around and have a central personwho does different things and then everyone does it. There are also some group activities that we alldo together; I do dance steps and I like that.” Those with low vision who considered a home-basedexercise program stated: “I am really not able to do that [Tai-Chi with a group of people in thesenior center]. If it was something I could do in a chair, like a chair exercise at home, I can dothose without any problem.” As those with low vision cannot drive a car any longer, they faced atransportation problem, leading to difficulty in participating in exercise programs in the com-munity senior center: “We have exercise programs at the senior center that is about 6 miles frommy house. It’s too far, I cannot do it.” Yet, there is another group of those with low vision whowere less motivated to do exercise alone at home: “I don’t think that I would do exercise at home.I am too lazy.”

Challenge of understanding written exercise instructionsThe older participants with low vision were concerned about a challenge of understanding theprinted exercise information, for example, from a physical therapy or a senior center. Those with lowvision preferred multimedia resources (e.g., DVD) to print media for information about physicalactivities. Thus, those with low vision often watched it on a larger TV screen, but they wish thatthere is a systematic way to obtain some feedback whether they are correctly following the instruc-tions of exercise: “I have had several appointments over the years with physical therapists and thechiropractor, and they gave me advice and I frequently got printed information. I do not really knowwhat they would do for someone with visual impairments. It looks like a difficult thing to learn. I didsome Tai-Chi but I did not keep up with it because it got complicated. I love something like a linedance instead because the instructor explains everything while she is doing. All I need is someone tellingme what to do.”

Health information management by personal mobile devicesThe older participants with low vision often stored health-related information (e.g., reminders fornext appointments) on their mobile phones: “I got that information [appointment time and date]entered into my phone calendar, I am planning on being there and confirm the time.” On the otherhand, those with low vision were also sensitive to privacy and security and were often concernedabout putting personal health information on the mobile device. Thus, those with low visionwould like to have a secure system: “I do not like to put personal [health] information in placeslike that [mobile devices]. If I lose my tablet, all my information is then going to be out there.”

Loneliness and healthy socializationThe older participants with low vision tended to spend a great amount of time in and around theirhomes as they became less mobile. Those with low vision highlighted the importance of social andhealth services to promote their physical and mental health: “It is healthy to get out and go places. Forexample, I go to the store and walk up and down the aisles. That is a good exercise for me! We have arecreation house in the senior center where [university name] students come over, and we talk to them.I enjoy, it is really nice to talk to someone.”

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Discussion

This study found that the older participants with low vision have various needs and concerns aboutthe use of health information and services. Those with low vision often encountered healthcareproviders who failed to provide health information in alternative formats. Those with low vision alsofound themselves reluctant to ask for health information in accessible formats. Those with low visionconfronted another challenge; that is, assistive technology applications were not affordable or usable.Even if those with low vision were able to obtain accessible health information, they still faceddifficulty in fully comprehending the information (e.g., written instructions for a home exerciseprogram). They also shared the concern about the privacy and security of personal health informa-tion. A more detailed discussion will follow below.

The older participants in the study were frustrated with their healthcare providers who failed toprovide accessible health information. Due to the hidden disability, that is, low vision, those with lowvision who do typically not carry a white cane or have a guide dog would probably appear to besighted people. Unless those with low vision voluntarily choose to reveal their visual disabilities, it isnormally hard for a healthcare provider to recognize their patients’ needs of health information in anaccessible format. Yet, those with low vision in this study also shared the concern that theirhealthcare providers were often unable to offer health information in accessible formats althoughthey were aware of their patients’ low vision status and needs for accessible information. Nzegwu28

also found similar findings, that is, over two-thirds of the participants (N = 832) with blindness andlow vision reported that their healthcare providers were unable to provide health information intheir preferred format. As it is well documented that a number of rural hospitals today deal withmany hardships, such as limited workforce and constrained financial resources,29 those healthcarefacilities might not have sufficient budget available to prepare alternative formats (e.g., large print,audio, and Braille).

Older adults with low vision in the study were also less likely to ask for health information inaccessible formats, which is consistent with a survey study in the United Kingdom.17 Those with lowvision simply assumed that their healthcare providers were less likely to make additional efforts toprepare another version in alternative formats such that those with low vision did simply not ask foraccessible health information. Those with low vision in this study were unaware that they have theright to ask for accessible information (e.g., The Americans with Disabilities Act), and they did notknow what alternative format materials are. Therefore, those with low vision resulted in relying onothers such as family members, friends, or even strangers, ultimately leading to compromising theirprivacy and losing their independence.

The hidden disability, low vision, might have contributed to their unwillingness to ask for specialsupport. In Goffman’s theory of social stigma,30 a stigma is described as an attribute which is sociallydiscrediting in a way that an individual is mentally distinguished from other members and classifiedin an undesirable, rejected stereotype. People who are worried about being socially stigmatized oftenhide their identities and present alternative identities to their peers. Multiple studies, for example,addressed that people attempt to hide their disabilities from others due to fear of stigma.31–33 Asopposed to other physical disabilities, low vision is a disability that is not immediately apparent.34 Aspeople with low vision can rely somewhat on their residual vision, they may not appear to be visuallyimpaired. Those with low vision may consciously or unconsciously pretend to be sighted individualsto protect themselves from social stigma and thus resist asking for help or using assistive technologyapplications,35 which would worsen their health information accessibility. A recent study byBarland36 used the stigma theory to devise an alternative aid for people with visual impairmentswho avoid using a white cane in public. The alternative aid was a computerized cane that does notappear to be a traditional white cane. Therefore, a potential intervention is ideally to provide healthinformation to the visually impaired group without forcing them to disclose their disability.Universal design has the potential to facilitate designing assistive technologies for people withdisabilities who are concerned about stigma.37 As the universal design approach is to make a

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product usable by everyone, regardless of users’ abilities and disabilities,38 the universally designedassistive technology does not appear to be exclusively designed for people with disabilities. Thus, theuniversal design approach can help to design a health intervention that enables older adults with lowvision to gain access to health information as much as do their sighted counterparts withoutrevealing their disability.39 Based on the findings under theme 1, it would be ideal to utilizemultimedia to deliver health information accessible to older adults with low vision. Yet, as discussedin theme 2, those with low vision shared their concerns about the assistive technology applicationswith poor usability. Therefore, it is recommended to develop a user-friendly assistive technology viauniversal design that functions to deliver multimedia-based health information accessible to olderadults with low vision.

The older participants with low vision were also aware that they would need to keep physicallyactive to stay healthy. Those with low vision often obtained exercise information in print fromphysical therapies, but it was not easy for them to understand how to perform the exercise byreading the printed materials. Those with low vision also considered participating in exerciseprograms in local senior centers, but they could not do so due to a limited transportation option.Instead, those with low vision would likely do exercise at home by, for example, watching DVDs; yet,they were unable to follow the regular exercise programs of DVDs that did not take their vision lossinto consideration. Those with low vision also wished to be monitored and properly instructed abouthow well they follow the instructions of exercise at home. A good example of a possible interventionmight be a group exercise program in a synchronous or asynchronous online mode. For instance, aprior study by Taylor et al.40 tested a group exercise program that was delivered to the sighted olderpatients with chronic obstructive pulmonary disease at home via the Internet and video-conferen-cing where a physiotherapist was also available to coach online. Their study confirmed that such atechnology-based group exercise program at home produced similar clinical outcomes to those in aconventional clinic-based program. Therefore, it is expected that the virtual group exercise programmay also contribute to older adults with low vision who would need to take care of themselves athome, and such a peer group-based intervention would also probably help to enhance theirsocialization. Those with low vision appreciated a computing system to manage their healthinformation; however, they were also concerned about the privacy and security of health informationon a personal mobile device. A possible solution may be to encrypt personal information, store themon a secure server, and require authentication for access.

Limitations of the research

A few limitations may affect the study. The study did not measure the degree to which a participantcan read, write, and use language, numbers, images, computers, and other basic means to under-stand, communicate, and obtain useful knowledge. For example, older participants with low vision inthe study might have various literacy levels, which would result in different experiences withaccessing and using health information and services. In addition, the study had a relatively smallsample size and all female participants such that a bigger sample size including more diverseparticipants might have led to additional results that the study did not find. As it is well documentedthat information from interviews is typically subject to response bias caused by the human interac-tion during the interview session, the participants in the study might have been encouraged ordiscouraged to express particular experiences and opinions. Yet, the study informed the participantsthat there were no socially acceptable responses to the interview questions and no answers that theresearch team wanted to hear.

Implications for health professionals

As an older adult with low vision might appear to be one without visual impairments and dislike toreveal their disability status, healthcare professionals are encouraged to ask their older patients

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whether alternative formats of health information are preferred. Older adults with low visionsomewhat rely on residual vision such that multimedia-based information can be useful over text-heavy information, but it should still be designed to ensure its accessibility, usability, andunderstandability.

Declaration of interest

The authors declare no conflict of interest.

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