Visual Impairment in Adults Discussed
Visual Impairment in Adults Discussed
Visual Impairment in Adults Discussed
Understanding of how older adults with low vision obtain, process, and understand health information and services Hyung Nam Kim, PhD
North Carolina Agricultural and Technical State University, Industrial and Systems Engineering, Greensboro, North Carolina, USA
ABSTRACT Introduction: Twenty-five years after the Americans with Disabilities Act, there has still been a lack of advancement of accessibility in healthcare for people with visual impairments, particularly older adults with low vision. This study aims to advance understanding of how older adults with low vision obtain, process, and use health information and services, and to seek opportunities 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 transcribed verbatim 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 from the analysis. Discussion: Due to the concerns, older adults with low vision tended to fail to obtain the full range of all health information and services to meet their specific needs. Those with low vision still rely on residual vision such that multimedia-based information which can be useful, but it should still be designed to ensure its accessibility, usability, and understandability.
KEYWORDS Accessibility; aging; assistive technologies; health information; low vision
Introduction
In the United States, 21.2 million adults are visually impaired,1 and approximately 3% of individuals aged 6 years and over have difficulty seeing letters in ordinary newspaper print even if wearing glasses or contact lenses.2 Low vision is defined as the best-corrected visual acuity equal to or better than 20/400 and worse than 20/70 in the better seeing eye.3 Each year 75,000 more Americans are expected to become visually impaired4; many of whom were born with intact vision but lost their vision 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 impairments over the next 30 years.4 In 2006, one of every six Americans older than 70 years was visually impaired; his figure doubled among individuals 80 years or older compared with those in the seventies.6 Low vision is particularly prevalent among older adults7 with two-thirds of individuals with low vision being older than 65 years.8
Twenty-five years after the Americans with Disabilities Act (ADA), there has still been a lack of advancement in healthcare for people with visual impairments associated with healthcare facilities, equipment, health promotion, and disease prevention programs,9,10 leading to poor health outcomes and decreased quality of life.11 The latest report from the National Academies of Sciences Engineering and Medicine12 shared the concern that many public health agendas and community programs have paid little attention to visual impairments. When individuals with visual impairments were asked to describe their own health status,13 almost 95% reported at least one health problem,
CONTACT Hyung Nam Kim, PhD hnkim@ncat.edu North Carolina Agricultural and Technical State University, Industrial and Systems Engineering, 1601 East Market Street, Greensboro, NC 27411, USA © 2017 Taylor & Francis
INFORMATICS FOR HEALTH & SOCIAL CARE 2019, VOL. 44, NO. 1, 70–78 https://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 visual impairments.11,15 Those with visual impairments often encounter poor communication with physi- cians, limited transportation options, and inaccessibility of health information.16 In particular, the inaccessibility of health information leads to multiple negative consequences, including compromis- ing patients’ privacy, loss of independence, safety issues (e.g., misreading medicine labels), and missed 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 about their 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 healthcare system as much as do sighted people. As the target population for this study is one who is visually impaired, obtaining information (i.e., accessibility) is very important. Yet, very little attention has been given to the elderly who have visual impairments, particularly low vision. The aim of this research is to examine the experiences (e.g., challenges, concerns, and needs) of older adults with low vision when obtaining, processing, and understanding health information, and seek opportunities of information 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 were shared with the local organizations. Those organizations informed older adults with low vision in their community about the research participation opportunity. Potential participants who were interested in participating in the study contacted the research team. This study was conducted in the United States. A research participant in this study was also allowed to personally introduce this study to his or her peer colleague(s) with low vision. A convenience sample of 10 older adults with low vision (mean age = 71.2 years) participated in the study who met the following eligibility criteria: English speaking, 65 years old or older, and visual acuity of 20/400.3 The exclusion criterion was individuals with hearing impairments that are severe enough to interfere with the phone interview. Visual acuity of participants was self-reported. Further characteristics of 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 to reach the target participants, that is, older adults with visual impairments who cannot drive any longer and have a limited transportation option. The telephone interview can remove such a transportation barrier, which would give everyone an equal opportunity to participate in the study. Second, the participants can conduct the interview at home where they feel much more comfortable and safe. This semi-structured interview was open, allowing new questions or follow-up questions to emerge during the interview as a result of what the interviewee said. The well-known initiative, Older Adults – Healthy People 202010 provided valuable insights, contributing to a set of sample questions including: “What types of health information have you used?,” “How have you obtained health information?,” “How have you used health information?,” and “How have you used assistive 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 but studying the interconnection of each to produce critical insights that are typically not covered in quantitative data analysis. As deductive content analysis is typically used in cases where a researcher wishes to retest existing data in a new context or test a previous theory in a different situation, the present study relied on inductive content analysis that focuses on the process of exploring the phenomenon via a sample of data such as observation and interviews.22–24 The interview transcripts were analyzed using grounded theory24 by conducting open coding, axial coding, and selective coding as many other studies take advantage of the grounded theory approach.25,26 The open coding process was to break down the data into segments to interpret them. The axial coding step was to put together the data by regrouping and making links. The selective coding process was to select a primary group and relate it to other groups.
With regard to data saturation, the content analysis was performed immediately after each interview to examine the degree to which new themes are identified.27 Of the codes, 74% were identified 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 still one of the critical resources for their healthcare. As those with low vision recognized that they were often not sorted in traditional categorizations, that is, people with and without blindness, those with low vision were concerned that their needs were less likely to be taken into consideration in designing accessible health information. This study has explored as to how older adults with low vision obtain, process, and understand health information and services. The research participants discussed the perceived facilitators and barriers to health information and services, which have been broken down into two main themes and nine subthemes. An inter-rater reliability analysis using Cohen’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) 71.2 Gender (female) 10 Race/ethnicity European American 7 African American 3
Education level High school graduate or equivalent 3 Some college of technical training 2 College degree 2 Advanced degree 3
Household income <$20,000 7 $20,000–$39,999 1 $40,000–$59,999 1 $60,000–$79,999 1
Marital status Married 5 Divorced 5
Visual acuity Between 20/200 and 20/400
72 H. N. KIM
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 formats The older participants with low vision tended to encounter a lack of support from their healthcare providers in that health information in alternative formats (e.g., audio, electronic, or large print versions) was often unavailable to them. One participant pointed out that even her eye doctor could not give her information in large print: “I went to the ophthalmologist. I was given a short survey form while 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 formats Another barrier was that the older participants with low vision were less likely to ask for information in alternative formats. Those with low vision simply assumed that their healthcare providers do not have a special printer to prepare materials in large print; that their providers are less likely to make additional effort to work all over again to prepare alternative format materials; and that providers would provide information in alternative formats if those with low vision carried a white cane or used others’ arm: “I never thought about asking my primary doctor if I can get information in large print” and “I am sure if it was obvious, like if I had somebody holding my arm or leading me, or if I had a guide dog, I’m sure they would ask if I needed an alternative format.”
Multimedia health information The older participants with low vision obtained health information from various sources including the Internet, TV, and family. As those with low vision could still rely on residual vision, they used various assistive technology applications (e.g., screen enlargement applications, screen readers, and voice recognition programs) when seeking health information online: “I use the adjustment on my computer, and my screen is magnified to make it easier to read.” Those with low vision also took advantage 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 health information.”
Theme 2: Process and understand health information
Difficult to read The older participants with low vision encountered a challenge of reading small fonts, such as drug labels. Thus, those with low vision used assistive devices (e.g., magnifiers) or tried to distinguish medicines and bottles by color and shape: “I take my black marker and mark on the bottles. Maybe this is one, this is two, and I remember by putting the numbers on the bottle or maybe making black marks, like a X or something round.” Sometimes those with low vision relied on other persons, but worried 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 people cannot read large print materials either. Personally, I cannot usually read large print ones because I do not see well enough.”
Unusable and unaffordable assistive technology Although those with low vision were aware that various assistive technology applications are available, they were concerned about the price and poor usability of those applications: “There are no health brochures that are enlarged that much, so I cannot use them, but I can access almost
