Stigma Among Older Adults With Age-Related Vision Impairments

Abstract

Introduction: Limited research has examined the experience and psychosocial effect of vision impairment in older adults. We examine the relationship between vision impairment and stigma using guided interviews among older adults with age-related eye disease. Methods: Thirty-six participants with vision impairment were recruited from glaucoma (n = 18) (better eye visual fields mean deviations: >5 and <15 decibels) or retina (n = 18) (better eye visual acuity: <20/40 and >20/400) clinics of the Johns Hopkins Wilmer Eye Institute between 2015 and 2020. Participants completed interviews to examine stigma surrounding age-related vision impairment. Interviews were transcribed and analyzed using directed content analysis. Results: Content analyses of interview transcripts revealed underlying stigma within our cohort. Starting with categories of (1) interpersonal relationships and (2) evolving self-perception, specific domains of stigma were realized in this study. Although both enacted (external) stigma and perceived stigma were acknowledged by a subset of participants, few endorsed internalized stigma. In the face of stigma, participants demonstrated notable resiliency in adapting to and living with age-related vision impairment, captured in an additional category of (3) behavioral adaptations. Discussion: In-depth interviews revealed that older adults with vision impairment confront specific domains of stigma, including enacted and perceived stigma. Features protective against internalized stigma included older age, community support, and assistive technologies. Implications for Practitioners: A recognition of the subtypes of stigma that older adults with age-related vision impairment face is necessary to tailor support and target interventions.

Keywords

vision loss visual impairment qualitative stigma ophthalmology

Limited qualitative research has examined the experience and associated stigma of vision impairment in older adults (Bennion et al., 2012; Bulk et al., 2020). Prior studies have identified loss of independence and changes to identity and self-esteem as important aspects of the experience of vision impairment. However, few studies have specifically identified the stigma of vision impairment in inhibiting social well-being and creating isolation among older adults (Bookwala & Lawson, 2011; Jessup et al., 2017; Nyman et al., 2012). Moreover, there exists limited research about stigma associated with specific common age-related eye diseases (Bennion et al., 2012).

Stigmatization is a social process that occurs at the social, structural, and internalized levels (Livingston & Boyd, 2010). Although discriminatory behavior that individuals experience is termed “enacted stigma,” the awareness of an identity tied to negative stereotypes and discrimination is termed “perceived stigma” (Jacoby, 1994). Consequently, the internalization of such negative stereotypes, termed “internalized (self) stigma,” can initiate a cycle of negative health outcomes (Gray, 2002). Stigmatized individuals may face depression, impaired quality of life, and low self-esteem, leading to further restriction of activities and diminished social roles (Hill & Startup, 2013; Livingston & Boyd, 2010; Link & Phelan, 2006; Link et al., 2001; Park et al., 2013).

Vision impairment is associated with an increased prevalence of depression, social interaction, and reduced quality of life in older adults, and the role that stigma plays in this process is understudied (Bookwala & Lawson, 2011; Hill & Startup, 2013). Older adults with sensory impairment often do not disclose their sensory loss, even to their healthcare team (Alhusein et al., 2018). Further, having a visible disability itself has been found to carry negative symbolic loads (Dos Santos et al., 2020). To reduce barriers to care and improve psychosocial well-being and overall functioning of older adults with vision impairment, it is critical to better understand the level and type of stigma they face. Here, we examine the relationship between vision impairment and stigma by conducting guided interviews with adults with age-related vision impairment.

Methods

The study was approved by the Johns Hopkins School of Medicine Institutional Review Board (IRB), adhered to the tenets set up by the Declaration of Helsinki, and was Health Insurance Portability and Accountability Act (HIPPA) compliant. This study relied on two analogous protocols: the first applied to all in-person data collection and the second accommodated remote data collection during the COVID-19 pandemic. Informed written/oral consent was obtained from participants prior to enrollment.

Participant Recruitment

Participants were recruited from glaucoma and retina clinics of the Wilmer Eye Institute, Johns Hopkins University School of Medicine. Inclusion criteria for the study comprised of age 55 years or older, a primary language as English, self-identifying as literate, and ability to provide informed consent. Inclusion criteria specific to glaucoma participants included physician diagnosis of glaucoma in at least one eye and presenting visual fields mean deviations between 5 and 15 decibels in the better-seeing eye. Inclusion criteria specific to participants from the retina clinics with age-related macular degeneration (AMD) included physician diagnosis of AMD in at least one eye and presenting Snellen visual acuity worse than 20/40 and better than 20/400 in the better-seeing eye. Adults with assistive devices (e.g., cane, guide dog) were excluded, as explicit signs of vision impairment may alter perceptions of and interactions with stigma (Dos Santos et al., 2020).

This study was conducted in two phases. The first phase (November 2015–March 2016) was a pilot study with in-person interviews. The second phase (October–November 2020) was a larger, remote sample conducted during the COVID-19 pandemic. Here, we have pooled responses and present our findings in aggregate. Demographic data (age, sex, education, employment status) and health (visit diagnosis) data were collected from participants’ Electronic Medical Records.

One-on-One Guided Interviews

Participants who agreed to be interviewed were scheduled for a 30–45-min study visit for a one-on-one guided interview by members of the study team. The interview prompts were informed by the study teams’ professional expertise in low vision and aging, interaction with individuals with vision impairment in the community, and lived experience from a member of the study team with vision disability. The interviews were done between 2015 and 2016 (n = 6) were conducted by CT and VV to establish consistency in light of their different disciplinary backgrounds (PhD in anthropology and public health (CT), MD (ophthalmology) and MPH in epidemiology and biostatistics (VV). All participants recruited in 2020 (n = 30) had remote interviews conducted by VV either over Zoom (n = 3) or by phone call (n = 27).

An interview guide was used to assess the lived experience and perceptions of stigma surrounding vision impairment (see Online Appendix 1). During the recruitment and interview process, participants’ ability to engage in the study was assessed by members of the study team. A few participants (n = 3) faced technological difficulties requiring either rescheduling or an alternate mode of communication (e.g., phone call instead of Zoom). Interviews were digitally audio-recorded, and a professional transcription service (Landmark Associates, Phoenix, AZ) generated verbatim transcripts for analysis.

Data Analysis

All quantitative and qualitative data were analyzed using Excel (Microsoft Corporation, version 16.47, 2021). Qualitative analysis relied on a novel data analysis tool, created by JC, which contained all interview transcripts and expedited the process of assigning codes to individual excerpts. Preliminary analysis comparing data from the pilot and subsequent larger study found consistency in the participant population and interview discussion, and therefore, data were analyzed in aggregate. Data analysis was conducted by two study team members (PK and JC) who both hold B.A.s and have backgrounds in biology (PK) and medical anthropology and linguistics (JC). During the transcript analysis process, study team members were masked to participant demographics.

The transcripts generated from the 36 interviews yielded 2,445 excerpts, evenly split between interviewer and participant dialogue. Transcripts were analyzed using a directed content analysis approach (Hsieh & Shannon, 2005). Transcripts were first independently reviewed by PK and (JC) who separately formulated codes through iterative analysis. Some excerpts were deemed to fit multiple codes and were poly-coded. A consensus meeting conducted by PK and JC finalizing codes identified 754 excerpt selections spanning 40 codes. Each interview generated an average of 21 coded excerpts (range: 5–61).

The generated codes covered a broad range of topics (see Online Appendix 2). Given the three domains of a social stigma (enacted, perceived, and internalized stigma), the study team established relevant categories for analysis. Two categories were used to frame this study: interpersonal relationships and evolving self-perception. A third category, behavioral adaptations, was included to capture the resiliency and adaptability of the study cohort. Certain codes were included in multiple categories (e.g., “impact on everyday life,” “loss of independence”). Other codes were deemed irrelevant to the study (e.g., “health insurance”) and were excluded from the analysis. Representative quotes were selected to form the data shown below.

Results

Sample Characteristics

Thirty-six participants were included in this study, 18 each with glaucoma and AMD, a mean age of 78.8 (SD: 10.1) years. Participants had a mean age of the first diagnosis of glaucoma/AMD at 67.9 (SD: 10.6) years. Half of all study participants identified as female, and most were white (77.8%) and retired (75.0%) (see Table 1). The average interview lasted 14.2 (range: 5.4–32.8) min.

Table 1.
Characteristics of Study Participants (N = 36).

Age, mean (SD) years 78.85 (10.1)

Female, n (%) 18 (50.0)

Race, n (%)

White 28 (77.8)

African American 8 (22.2)

Hispanic/Latino, n (%) 1 (2.8)

Clinical Diagnosis, n (%)

Glaucoma or Glaucoma suspect 18 (50.0)

Age-related macular degeneration 18 (50.0)

Age at First Diagnosis, mean (SD) years 67.9 (10.6)

Highest Level of Education, n (%)

At or below 12^th grade 2 (5.6)

12^th grade—4 years of college 11 (30.5)

Graduate or professional school 23 (63.9)

Employment Status, n (%)

Employed 9 (25.0)

Unemployed/Retired 27 (75.0)

SD = standard deviation.

Interpersonal Relationships

Enacted Stigma

Enacted stigma, or discriminatory behavior that affected individuals of a group face, was heterogeneously reported among study participants. This subtype of stigma was best captured by the category of “interpersonal relationships” comprised of codes including “disclosure,” “reactions from others,” and “friends and other social interactions” (see Table 2). Some participants were surprised to be asked questions about stigma relating to vision impairment, as “the vision don’t come into the equation at all.” Others felt differently, with one participant wryly noting that “you’ll get a reaction some way or the other.” Yet other participants highlighted the supportive encounters they had experienced, of strangers helping participants interpret menus, swipe credit cards, push buttons, and cross streets. An overarching theme endorsed by multiple participants was the need for understanding and compassion when interacting with older adults with vision impairment.

Table 2.
Category Identified From Content Analysis: Interpersonal Relationships.

Interviewee number Subtheme

Subtheme: enacted stigma

22 I think it hurts them, because they are targeted as different. They are targeted as not a whole person, as being a less—lesser person, not being treated as a whole individual as a brother or a sister as we are supposed to treat each other. I do feel that people feel rejected—rejected in general.

10 The few people that I know who have macular degeneration are not treated any differently than they would be if they were normal, except for the fact that my friends and the people that I know are cognizant of the fact that the other person has this problem and handicap. They don’t disrespect or respect it one way or another.

I’m sure that there are people who say, “Oh, this man's blind,” or, “He's an idiot,” or, “He can’t read,” and make fun of him, but my opinion of those kind of people are that they are the weak ones. They are the ones that don’t have any self-assurance, are not the kind of people that I’d wanna be around.

2 I think people will treat you a little differently and they have to too. I mean if somebody's coming down with a white cane, you automatically move over, get out of their way or something like this or some people are having some eye problems themselves and they don’t even want to talk to a person like that. Then other people go out of their way to be super friendly to ‘em. I mean there's everybody's reaction is different.

You’ll get a reaction some way or the other.

28 No, I haven't had any experiences that caused me to think that the treatment is disparate.

1 Yeah. I was a little surprised when you said the negative social impact of glaucoma because I don’t think I’ve experienced that.

Subtheme: Perceived Stigma

30 Yeah, I’ve just been reluctant to share it. Why is a good question. I feel like I’m complaining. I don’t wanna complain.

25 I have no qualms about telling people anything about it. I never hide it, but I don’t necessarily tell people. If it's relevant, I do.

4 I just don’t want to have a perception of limitations.

7 I don't know. Why should they know? I don't think they need to know.

9 I don’t want people to feel sorry for me.

2 Then you start asking for a little bit of help and they can’t see why because you never asked for it before and you notice yourself you’re not confident driving because you can’t read the street signs, writing checks, you mix up ones and sevens and nines and fours and then they get mad at you. “Mom, that's not a 179, that's 779, you know that type thing. Then you start realizing that you have problems.

6 I don’t think it's anyone's business. I’m not the kind of person who's, “Woe is me, oh I have this, I have that.” People don’t wanna hear about your aches and pains and your ailments. They wanna hear positive things.

Notably, study participants did not have external indicators of vision impairment (e.g., cane, wheelchair, guide dog). One participant acknowledged the role of having an invisible disability in shaping the type of discrimination she faced. She noted that while her vision impairment could be masked, those whose impairment is more readily apparent may be exposed to more reactions (and potentially discriminatory behaviors) from strangers.

Perceived Stigma

Evidence for perceived stigma, the awareness of an identity tied to negative stereotypes and discrimination, often emerged when participants were asked about their decision to disclose their diagnosis with others (see Table 2). Thirty of the 36 participants (83.3%) spoke about the thought process that went into disclosing a diagnosis of vision impairment. Most participants stated that the decision to divulge their vision impairment was dependent on a given situation: “I have no qualms about telling people anything about it … If it's relevant, I do.” Among those who were reluctant to share their diagnosis, rationales given ranged from not wanting to “feel like I’m complaining,” to avoid having others “feel sorry for me” to shunning “a perception of limitations.” One participant even pointed to a societal unwillingness to engage with illness narratives.

Although they may not have endorsed the presence of perceived stigma in their lives, participants did note that their identity formation had to adapt to the changing relationships they had with others due to their vision impairment. Several individuals reported challenges navigating and managing expectations secondary to their progressive disease. Although some participants aimed “to act as normal as possible” or tried “to ignore it,” others found themselves with limits on their behaviors (e.g., driving) suggested by family and friends, and frustrations about changing relationships emerged.

Evolving Self-Perception

Internalized Stigma

Support for internalized stigma, or the transformation of identity and adoption of negative stereotypes, was largely absent in the guided interviews. Often, vision impairment was deemed less concerning than other comorbidities, be they chronic conditions or more advanced sensory impairments (e.g., hearing loss), that shaped the identities of our cohort (see Table 3). At times, vision impairment was simply considered a sequelae of aging, just “…getting older and these things are happening.” Given their older age, participants sometimes viewed a diagnosis of AMD or glaucoma as endurable for they had already lived many years with disease-free sight.

Table 3.
Category Identified from Content Analysis: Evolving Self-perception.

Interviewee number Subtheme

Subtheme: Internalized Stigma, Role of Age

26 Yeah, I don't like any diminution, physical, in eyesight, mental, or something else like that. I'm in my mid-80s. There is a little bit—I still work out in gyms and walk and do things like that. I'm relatively fit. I have no underlying conditions or, what they call now, comorbidities. I probably lead a reasonably active life for someone in their mid-80s.

33 Like I said before, I think the hearing loss, even with the best of hearing aids, has had much more impact on me than the vision loss. With glasses and treatment and all of that, my vision was more than okay for me, knowing that I have glaucoma, yes, but no. The hearing loss is much, much, much, much more significant for me anyway.

2 Yeah, I think age related. Like 77, how many more good years will I have left in me? Ten or something like this, to 80-some. What are the chances? I mean going blind before I hit 87 and die or die before I go blind? I mean we were up there. We had a full life. We did everything. When you’re young I think it would hit you much, much differently than being older.

9 Yes. I hate it. I absolutely hate it, but there's nothing I can do about it. I see myself as getting older and these things are happening. I just turned 80, and so I’m really kind of already preparing for the last chapters of my life, overall. This has added to that, if that makes sense.

5 I would think, if I was in good health, I'd hate to be in that position. Now that I'm in that position, it doesn't bother me. I stay in the house. It doesn’t really bother at all.

Subtheme: Internalized Stigma, Identity Formation

2 You feel differently from day-to-day because your eyes are different. That's how you get up in the morning, how you feel that day, how you react to things. Some days you just take it in stride. Some days you really get down, frustrated, depressed. It all depends. You can’t just put it into one category.

10 When I meet people, if they ask me, I’ll tell ’em, but I don’t go out and say, “Oh, hi. How are you? My name is [name redacted]. I have macular degeneration.” If somebody were to ask me, I’d say this is not a badge of honor, and it's not a badge of disgrace. It's just one of the things that's part of me.

25 This all came about gradually.

9 I’m adapting. It takes work and effort. I’m sort of at the low end. I’m preparing mentally for, because it's gradually getting worse all the time. I’m trying to mentally prepare myself for greater loss, which is work. It's mental effort.

Participants took their diagnosis in stride when considering identity formation. The gradual progression of disease often meant that participants had time to adapt to their changing circumstances (see Table 3). Nevertheless, interviews revealed numerous moments of frustration, distress over losing independence, concerns of burdening others, and sorrow over losing the way of life they once led. The inter- and intrapersonal impacts of vision impairment, while not always acute or dramatic, still played a large part in defining a sense of self within our cohort.

Behavioral Adaptations

Building Resiliency

In living with vision impairment, participants demonstrated remarkable resiliency and adaptability (see Table 4). These features captured a system of support and adaptations central to mitigating aspects of stigma and were largely discussed in relation to behavioral modifications. Notably, the theme of accommodations and assistive technology was appreciated by 17 of the 36 participants (47.2%). Participants adopted various resources to adapt to the world around them, ranging from using magnifying glasses to digitally adjusting font sizes and contrast settings.

Table 4.
Category Identified from Content Analysis: Behavioral Adaptations.

Interviewee number Subtheme

Subtheme: Activities of Daily Living

35 Yes. Thank you. I using extra light whenever I need it. I don't drive at night. I drive places I only know where I'm going. I don't get on the highway at all if I can, but I just go to the store, to church, to a restaurant in the neighborhood.

24 Well, for example, I really like the beach and the water. I used to really enjoy swimming. That's not something that I really do anymore because I don’t like to be out in public without the ability to see. You feel vulnerable.

13 The amount of help I’ve needed has really been in the last year or two. I’ve had to find ways to be able to read things, to read books. I no longer can read books. I’m married, live with my husband. My level of low vision, if you didn’t have someone around to read the labels on your clothes to see if they need cold water, or the recipe, or that kind of thing, life would be very difficult.

36 I've been told that there may be some other program within Department of Motor Vehicles that is for people like me who have limited vision abilities, and I'm interested in that. I'm interested in anything that will maintain my license.

20 I have a series of seeing aides, I guess. One of my daughters contacted a state agency that provides aides to people having vision problems, so I’m lucky right now that I have a series of magnifying glasses, and I also have this thing that helps you read. It's very good, except you can’t read volumes anymore. I mean you have a very selective amount of things you could read ’cause it's not at all handy to read with.

Subtheme: Adaptability and Resiliency

16 … I use the magnifying glass. Any really small print, it runs together, like I don’t do emails on my phone anymore, but I got the thing. Even though I blow it up—[name redacted] taught me how to blow up my phone, but it's still at times, the phone doesn’t do what it's supposed to do, probably ’cause I’m not doin' it right. That's why I use the magnifying glass. I can do that. It's fine.

17 If I get into a situation with that, I tell them right off the bat that I have vision loss and I really can't read the drawings and read the specs, however I can go out in the field and I can see stuff and analyze stuff by doing that.

32 I try to basically engineer my way around the problem. If there's a choice between doing something that requires fine vision and doing something a different way, doing the same thing a different way that doesn't—isn't dependent or as dependent on fine vision, then I choose the version that is not—that doesn't fall victim of my disability.

Almost all of the study participants (n = 33, 91.6%), spoke about adjustments they made relating to activities of daily living including driving, reading, and hobbies. Although some adults turned to other individuals for support (e.g., hiring personal drivers), others relied on communities for assistance as they aged (e.g., residing in assisted living communities).

Discussion

In this study of older adults with vision impairment at a tertiary eye hospital, in-depth interviews revealed the presence of specific domains of stigma. Although the category of “interpersonal relationships” showed a heterogeneous endorsement of both enacted and perceived stigma, the category of “evolving self-perception,” revealed minimal endorsement of internalized stigma. We surmise that the older age of our study cohort and the gradual progression of glaucoma and AMD served as protective factors in combating internalized stigma; 10 of the 36 participants (27.7%) attributed their vision loss to the experience of aging. Most participants (n = 27, 75.0%) highlighted their resiliency and adaptability to vision impairment during their interviews. To best serve and target interventions toward older adults with vision impairment, it is critical that subtypes of the stigma associated with age-related vision impairment be better assessed.

The intersection of disability and aging provides a unique lens through which to assess stigma. As discussed, stigma can be defined in various dimensions, including enacted, perceived, and internalized stigma. Although domains of stigma may overlap and intersect, there has been little research on the prevalence of and nuances between these subtypes among older adults with vision impairment. Identifying stigma subtypes may allow for targeted interventions and focused patient-centered care.

The themes identified in this study are representative of overall work in the field of stigma in older adults with vision impairment (Green et al., 2002; Kleinschmidt, 1999; Stanford et al., 2009). Previously identified themes include fears about disease progression, concerns about losing independence, and the importance of identifying behavioral and psychosocial adaptations (Fraser et al., 2019; Jackson et al., 2019; Nyman et al., 2012). Unlike the older adults in our cohort, younger adults may face different experiences with stigma; college students with vision impairment have been found to demonstrate high levels of internalized (self) stigma (Kong et al., 2020).

Research has also been conducted on stigma among older adults with other sensory impairments. Perceived stigma has been found to be pervasive among older adults with hearing loss, often exacerbated in the setting of hearing aids, in a “youth- and appearance-focused society” (Wallhagen, 2009). To combat such stigma, studies have emphasized the role of peer-support, coping strategies, and assistive devices in empowering adults (Barker et al., 2017; Southall et al., 2010). Participants in our study appreciated the role of adaptive technology and assistive devices in enabling them to independently conduct activities of daily living. These findings may combine and be compounded in instances of dual sensory impairment, or with increasing comorbidities, as various study participants alluded to.

This study highlights the prevalence of different domains of stigma among older adults with vision impairment and underscores the need for health care providers to understand and appropriately respond to stigma. People with disabilities often face health care disparities resulting from a lack of understanding of the healthcare system (Agaronnik et al., 2019a; Agaronnik et al., 2019b). Bridging gaps in disability cultural competence may allow for better support of patients, greater societal understanding of disability, and lower levels of stigma. Orienting patients in rehabilitation programs may also help them understand the psychosocial aspect of disease and increase the use of tools that accommodate vision changes (Heyl & Wahl, 2014; Kleinschmidt, 1996; Spafford et al., 2010).

Limitations

This study is limited by a small and fairly homogenous cohort. Our study population was largely comprised of white, well-educated, older adults, and it is possible that our findings are not generalizable (Murphy, 2013; Wang et al., 2008). We excluded participants with more advanced vision impairment who use assisted technology aids (e.g., white cane, guide dog), as the visibility of disability can directly impact the perception of stigma (Dos Santos et al., 2020). Further, the role of independence in shaping identity and internalized stigma may not be as prevalent in cultures that emphasize cultural interdependence and familial support (O’Brien et al., 2017).

Conclusion

Overall, we found that older adults with vision impairment heterogeneously report enacted and perceived stigma, but not internalized stigma. Older adults with vision impairment also showed resilience in tackling their progressive vision loss, most often turning to social support and technological assistance to pursue activities of daily living. Moving forward, it is critical to find appropriate ways to characterize stigma among older adults with vision impairment to both understand the level and type of stigma they face and to develop targeted interventions to support this population.

Supplemental Material

sj-docx-1-jvb-10.1177_0145482X221132844 - Supplemental material for Stigma Among Older Adults With Age-Related Vision Impairments

Supplemental material, sj-docx-1-jvb-10.1177_0145482X221132844 for Stigma Among Older Adults With Age-Related Vision Impairments by Priyanka Kumar, Jessica Campanile and Bonnielin K. Swenor, Varshini Varadaraj in Journal of Visual Impairment & Blindness

Interviewee number	Subtheme
Subtheme: enacted stigma
22	I think it hurts them, because they are targeted as different. They are targeted as not a whole person, as being a less—lesser person, not being treated as a whole individual as a brother or a sister as we are supposed to treat each other. I do feel that people feel rejected—rejected in general.
10	The few people that I know who have macular degeneration are not treated any differently than they would be if they were normal, except for the fact that my friends and the people that I know are cognizant of the fact that the other person has this problem and handicap. They don’t disrespect or respect it one way or another.
I’m sure that there are people who say, “Oh, this man's blind,” or, “He's an idiot,” or, “He can’t read,” and make fun of him, but my opinion of those kind of people are that they are the weak ones. They are the ones that don’t have any self-assurance, are not the kind of people that I’d wanna be around.
2	I think people will treat you a little differently and they have to too. I mean if somebody's coming down with a white cane, you automatically move over, get out of their way or something like this or some people are having some eye problems themselves and they don’t even want to talk to a person like that. Then other people go out of their way to be super friendly to ‘em. I mean there's everybody's reaction is different.
You’ll get a reaction some way or the other.
28	No, I haven't had any experiences that caused me to think that the treatment is disparate.
1	Yeah. I was a little surprised when you said the negative social impact of glaucoma because I don’t think I’ve experienced that.
Subtheme: Perceived Stigma
30	Yeah, I’ve just been reluctant to share it. Why is a good question. I feel like I’m complaining. I don’t wanna complain.
25	I have no qualms about telling people anything about it. I never hide it, but I don’t necessarily tell people. If it's relevant, I do.
4	I just don’t want to have a perception of limitations.
7	I don't know. Why should they know? I don't think they need to know.
9	I don’t want people to feel sorry for me.
2	Then you start asking for a little bit of help and they can’t see why because you never asked for it before and you notice yourself you’re not confident driving because you can’t read the street signs, writing checks, you mix up ones and sevens and nines and fours and then they get mad at you. “Mom, that's not a 179, that's 779, you know that type thing. Then you start realizing that you have problems.
6	I don’t think it's anyone's business. I’m not the kind of person who's, “Woe is me, oh I have this, I have that.” People don’t wanna hear about your aches and pains and your ailments. They wanna hear positive things.

Interviewee number	Subtheme
Subtheme: Internalized Stigma, Role of Age
26	Yeah, I don't like any diminution, physical, in eyesight, mental, or something else like that. I'm in my mid-80s. There is a little bit—I still work out in gyms and walk and do things like that. I'm relatively fit. I have no underlying conditions or, what they call now, comorbidities. I probably lead a reasonably active life for someone in their mid-80s.
33	Like I said before, I think the hearing loss, even with the best of hearing aids, has had much more impact on me than the vision loss. With glasses and treatment and all of that, my vision was more than okay for me, knowing that I have glaucoma, yes, but no. The hearing loss is much, much, much, much more significant for me anyway.
2	Yeah, I think age related. Like 77, how many more good years will I have left in me? Ten or something like this, to 80-some. What are the chances? I mean going blind before I hit 87 and die or die before I go blind? I mean we were up there. We had a full life. We did everything. When you’re young I think it would hit you much, much differently than being older.
9	Yes. I hate it. I absolutely hate it, but there's nothing I can do about it. I see myself as getting older and these things are happening. I just turned 80, and so I’m really kind of already preparing for the last chapters of my life, overall. This has added to that, if that makes sense.
5	I would think, if I was in good health, I'd hate to be in that position. Now that I'm in that position, it doesn't bother me. I stay in the house. It doesn’t really bother at all.
Subtheme: Internalized Stigma, Identity Formation
2	You feel differently from day-to-day because your eyes are different. That's how you get up in the morning, how you feel that day, how you react to things. Some days you just take it in stride. Some days you really get down, frustrated, depressed. It all depends. You can’t just put it into one category.
10	When I meet people, if they ask me, I’ll tell ’em, but I don’t go out and say, “Oh, hi. How are you? My name is [name redacted]. I have macular degeneration.” If somebody were to ask me, I’d say this is not a badge of honor, and it's not a badge of disgrace. It's just one of the things that's part of me.
25	This all came about gradually.
9	I’m adapting. It takes work and effort. I’m sort of at the low end. I’m preparing mentally for, because it's gradually getting worse all the time. I’m trying to mentally prepare myself for greater loss, which is work. It's mental effort.

Interviewee number	Subtheme
Subtheme: Activities of Daily Living
35	Yes. Thank you. I using extra light whenever I need it. I don't drive at night. I drive places I only know where I'm going. I don't get on the highway at all if I can, but I just go to the store, to church, to a restaurant in the neighborhood.
24	Well, for example, I really like the beach and the water. I used to really enjoy swimming. That's not something that I really do anymore because I don’t like to be out in public without the ability to see. You feel vulnerable.
13	The amount of help I’ve needed has really been in the last year or two. I’ve had to find ways to be able to read things, to read books. I no longer can read books. I’m married, live with my husband. My level of low vision, if you didn’t have someone around to read the labels on your clothes to see if they need cold water, or the recipe, or that kind of thing, life would be very difficult.
36	I've been told that there may be some other program within Department of Motor Vehicles that is for people like me who have limited vision abilities, and I'm interested in that. I'm interested in anything that will maintain my license.
20	I have a series of seeing aides, I guess. One of my daughters contacted a state agency that provides aides to people having vision problems, so I’m lucky right now that I have a series of magnifying glasses, and I also have this thing that helps you read. It's very good, except you can’t read volumes anymore. I mean you have a very selective amount of things you could read ’cause it's not at all handy to read with.
Subtheme: Adaptability and Resiliency
16	… I use the magnifying glass. Any really small print, it runs together, like I don’t do emails on my phone anymore, but I got the thing. Even though I blow it up—[name redacted] taught me how to blow up my phone, but it's still at times, the phone doesn’t do what it's supposed to do, probably ’cause I’m not doin' it right. That's why I use the magnifying glass. I can do that. It's fine.
17	If I get into a situation with that, I tell them right off the bat that I have vision loss and I really can't read the drawings and read the specs, however I can go out in the field and I can see stuff and analyze stuff by doing that.
32	I try to basically engineer my way around the problem. If there's a choice between doing something that requires fine vision and doing something a different way, doing the same thing a different way that doesn't—isn't dependent or as dependent on fine vision, then I choose the version that is not—that doesn't fall victim of my disability.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Research to Prevent Blindness

Supplemental Material

Supplemental material for this article is available online.

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Age, mean (SD) years	78.85 (10.1)
Female, n (%)	18 (50.0)
Race, n (%)
White	28 (77.8)
African American	8 (22.2)
Hispanic/Latino, n (%)	1 (2.8)
Clinical Diagnosis, n (%)
Glaucoma or Glaucoma suspect	18 (50.0)
Age-related macular degeneration	18 (50.0)
Age at First Diagnosis, mean (SD) years	67.9 (10.6)
Highest Level of Education, n (%)
At or below 12^th grade	2 (5.6)
12^th grade—4 years of college	11 (30.5)
Graduate or professional school	23 (63.9)
Employment Status, n (%)
Employed	9 (25.0)
Unemployed/Retired	27 (75.0)