Medical Anthropology

Cross-Cultural Studies in Health and Illness

ISSN: 0145-9740 (Print) 1545-5882 (Online) Journal homepage: https://www.tandfonline.com/loi/gmea20

Diabetic Retinopathy and the Cascade into Vision

Loss

Carolyn Smith-Morris, George H. Bresnick, Jorge Cuadros, Kathryn E. Bouskill

& Elin Rønby Pedersen

To cite this article: Carolyn Smith-Morris, George H. Bresnick, Jorge Cuadros, Kathryn E. Bouskill
& Elin Rønby Pedersen (2020) Diabetic Retinopathy and the Cascade into Vision Loss, Medical
Anthropology, 39:2, 109-122, DOI: 10.1080/01459740.2018.1425839

To link to this article: https://doi.org/10.1080/01459740.2018.1425839

Accepted author version posted online: 17

Jan 2018.
Published online: 20 Mar 2018.

Submit your article to this journal

Article views: 503

View related articles

View Crossmark data

Citing articles: 2 View citing articles

Full Terms & Conditions of access and use can be found at

https://www.tandfonline.com/action/journalInformation?journalCode=gmea20
MEDICAL ANTHROPOLOGY
2020, VOL. 39, NO. 2, 109–122
https://doi.org/10.1080/01459740.2018.1425839

Diabetic Retinopathy and the Cascade into Vision Loss

Carolyn Smith-Morris a, George H. Bresnickb, Jorge Cuadrosb, Kathryn E. Bouskill c
,
and Elin Rønby Pedersend
a
Department of Anthropology, Southern Methodist University, Dallas, Texas, United States; bSchool of Optometry,
University of California, Berkeley, Berkeley, California, United States; cRAND Corporation, Santa Monica, California,
United States; dGoogle Research, Google, Inc., Mountain View, California, United States

ABSTRACT KEYWORDS
Vision loss from diabetic retinopathy should be unnecessary for patients with Cascading morbidities;
access to diabetic retinopathy screening, yet it still occurs at high rates and in diabetic retinopathy;
varied contexts. Precisely because vision loss is only one of many late-stage follow-up referrals; United
complications of diabetes, interfering with the management of diabetes and States; vision loss
making self-care more difficult, Vision Threatening Diabetic Retinopathy
(VTDR) is considered a “high stakes” diagnosis. Our mixed-methods research
addressed the contexts of care and treatment seeking in a sample of people
with VTDR using safety-net clinic services and eye specialist referrals. We
point to conceptual weaknesses in the single disease framework of health
care by diagnosis, and we use the framework of “cascades” to clarify why and
how certain non-clinical factors come to bear on long-term experiences of
complex chronic diseases.

In this article, we consider vision loss to be an unnecessary and catastrophic event, even for people
with diabetes. This viewpoint may be optimistic within health care systems accustomed to high rates
of diabetes and to a view of comorbidity as the multi-issue effect of a single disease rather than as a
window to broader biosocial problems (Weaver, Barrett, and Nichter 2016:436–437). In the research
we report, we explored factors contributing to breakdowns between diagnosis of VTDR and its
treatment for patients found through retinal screening to be at high risk for vision loss. While similar
barriers exist for retinal screening as exist for any follow-up evaluations or treatments, relatively little
research has been conducted on the vision-specific vulnerabilities of patients diagnosed with diabetes
(Zoega et al. 2005).
Despite the well-established effectiveness of timely detection and treatment (Ferris 1993),
diabetic retinopathy remains a leading cause of vision loss among working-age adults (Klein
2007). A major factor in these rates is a lack of timely detection through regularly scheduled
retinal screening (Keenum et al. 2016; Zhang et al. 2007; Zoega et al. 2005; Murchison et al.
2017), itself most often due to lack of insurance coverage, lack of patient knowledge, and
cultural and linguistic barriers (Lee et al. 2014; Lee et al. 2000; Paz et al. 2006; Walker et al.
2008). Telemedical screening programs (Cuadros and Bresnick 2009; Walker et al. 2008),
which enable cost-effective retinal screening within primary care settings, have helped address
these needs (Kirkizlar et al. 2013; Nguyen et al. 2016; Taylor et al. 2007). However, among
those found through telemedicine screening to have VTDR, as many as 80% will not attend
subsequent recommended evaluations by an eye specialist or receive ophthalmological treat-
ment (Keenum et al. 2016; Quade 2011). Precisely because vision loss interferes with the
management of diabetes and makes other aspects of self-care more difficult, VTDR is a high
stakes diagnosis. Below we discuss implications for its timely detection, educational

CONTACT Carolyn Smith-Morris smithmor@smu.edu Dedman College of Humanities & Sciences, Southern Methodist
University, PO Box 750235, Dallas, TX 75275-0235, USA.
© 2018 Taylor & Francis
110 C. SMITH-MORRIS ET AL.

opportunities in conjunction with the screening experience, and substantive support for
follow-up care.

Background
VTDR is defined as retinopathy severity that, if left untreated, is highly likely to result in vision
impairment or blindness. As VTDR is often asymptomatic in its initial stages, DR screening through
live examination of the ocular fundus or through retinal imaging is recommended on a regular
(usually annual) basis in order to detect VTDR at an optimally treatable stage. Depending on severity
at time of detection, follow-up evaluation and treatment by a qualified ophthalmologist are recom-
mended – sometimes within days of its discovery, and usually no more than three months later.
Delays in follow-up can lead to suboptimal or poor visual results.
Research studies performed in contexts as varied as a Tanzanian tertiary ophthalmology hospital
(Mtuya et al. 2016), a suburban tertiary care facility in India (Thompson et al. 2015), and a county
facility in Alabama (Keenum et al. 2016) reveal several common factors significantly associated with
poor follow-up after VTDR diagnosis. These include: lack of knowledge about eye disease and its
treatments, poor vision, inability to take time away from work, financial limitations, and lack of
clarity of the referral process. These familiar social determinants of poor follow-up to VTDR
detection do not adequately consider the compounding of disability over time. VTDR should
therefore be studied in the context of diabetes, its complications, and its comorbidities. As we
attempt to demonstrate, the complex picture of vision loss among people with diabetes is not
adequately understood through research on a single factor alone.
Our research, which aimed to understand the contexts of care and treatment seeking in a
sample of people with VTDR using safety-net clinic and referral services, reveals particular
vulnerabilities of the poor in managing diabetes. We employed mixed methodologies with
both patients and providers, including home interviews of patients and on-site shadowing,
observations, and interviews of patients and staff within three safety-net clinics. This combina-
tion of methodologies promotes an understanding of our informants’ vision loss as a cata-
strophic point in the “cascading morbidities” (Manderson and Warren 2016) possible with a
diabetes diagnosis. Our argument makes a distinction between an original diagnosis of diabetes
and later – and related (but not inevitable) – complications and co-morbid diagnoses, such as
VTDR. Manderson and Warren (2016) explain “cascades” as “the interweaving and compound-
ing of social and health problems at multiple levels” (2016:491). They emphasize the repetition
and compounding of these “recursive” factors as essential variables in the trajectory of chronic
disease. Multiple morbid conditions do not simply erupt and co-exist, but are in perpetual
interaction with each other and with the social environment over time. We will address vision
loss and diabetes as two such recursive factors.
Manderson and Warren’s concept of “cascading” morbidities grapples with the fact that certain
morbid conditions occur because of the medical relatedness of those conditions, but that others
occur because of the disability or barriers faced by patients as a result of the first conditions. The
term “cascade” also indicates how, when one disease is not under control, new morbidities more
easily erupt. The reasons for the cascade may be medical-relatedness but they may also involve
structural, interactional, and situational factors. Thus, research into these multiple morbidities must
look at and beyond the co-morbid diagnoses per se into the contextual synergies that develop over
time (Smith-Morris 2006b, 2010). Our research into diabetes related vision loss points to conceptual
weaknesses in the single disease framework of health care by diagnosis (Weaver, Barrett, and Nichter
2016) and contributes to a reframing of diabetes as a biosocial and syndemic condition (Singer et al.
2017; Weaver and Mendenhall 2014).
An anthropological approach to vision loss examines not only multiple aspects of the illness
context, but also how these aspects intersect to shape experiences and responses for patients, health
care providers, and the structures in which they interact. The framework of “cascades” clarifies why
 MEDICAL ANTHROPOLOGY 111

and how certain non-clinical factors come to bear on long-term experiences of complex chronic
diseases (Manderson and Warren 2016; Manderson and Smith-Morris 2010). Our discussion aims to
elaborate this framework using the example of diabetes-related vision loss.

Research design and methods

We conducted observations and semi-structured interviews with individuals from the following
groups: (1) patients identified with VTDR through a telemedicine-based retinal screening program;
(2) patients in primary care settings attending screening for DR; and (3) staff working across the
spectrum of care for diabetic patients. Interview guides were tailored to each of these three sample
groups, and explored the knowledge, experience, and social and logistical resources that might impact
care or patient access to care for the threat of vision loss from DR. The study was conducted in
2015–2016 at three safety-net clinic sites2 that utilize EyePACS, a telemedicine-based DR screening
program (Cuadros and Bresnick 2009). We included clinics in urban (Charity Medical Center),
suburban (Creekview County Medical Center), and rural (High Point Family Health Clinic) settings
in California, US. We did not collect systematic data, such as income, gender, or residency status, so
did not assess correlation of these factors with non-adherence or subsequent vision loss. However, we
strongly suspect these variables had an impact on our subject so, when such information was raised in
interviews, we have included it in our report below. All clinic names, as well as the names of
participants, are pseudonyms.
There were three sets of study participants at each site. The first set consisted of a purposive sample
of five people with VTDR, age 21 and older with a diagnosis of diabetes, recruited for a one-time,
extended at-home interview. These informants had been diagnosed with VTDR by telemedicine-based
diabetic retinopathy screening at least six months before and up to three-and-a-half years before the
start of the study, and had been recommended to see an optometrist and/or ophthalmologist for
further evaluation and possible treatment. Of the five patients recruited for each site, two were judged
to have adhered to referral and treatment recommendations and three were not; this judgment was
based on chart reviews. Home interviews (n = 15) asked questions in several areas: experiences with
eyesight and diabetes management; knowledge of diabetes and its relationship with vision problems;
daily life; support network; and last retinal screening appointment. Several questions produced
countable responses that offer a snapshot of issues, such as knowledge, adherence, and support
resources (see Table 1).
The second set consisted of a purposive sample of three diabetic patients in each clinic site. These
patients were referred by their care provider for DR screening and invited to participate in the
interview shortly before undergoing digital retinal imaging. The retinal imaging procedure was
directly observed by one or more members of the research staff, and patients were interviewed
immediately following the procedure. DR Screening Interviews (n = 9) asked questions in the
following areas: patient experience during the screening; transportation; general satisfaction; under-
standing of the link between diabetes and vision loss; and understanding of referral indications.

Table 1. Selected Home Interview Questions

No
Question Yes No response
Is there a relationship between diabetes and your eye health? 8 3 4
Is there any way to improve your vision? 10 3 2
Do you find it easy to comply with doctors’ recommendations? 3 11 1
Do you have a family member or friend to talk to about your 10 4 1
diabetes or diabetic retinopathy?
Have you followed up on the recommendations of your last retinal 8 4 0
screening? (plus 1 “trying”, 1 “yes and no”, and 1 “I
wasn’t contacted”)
112 C. SMITH-MORRIS ET AL.

Table 2. Characteristics of the Sample

Age % Preferring language % With less than a % Unemployed or
Number range % Male other than English high school education disabled (not working)
Home interviews 15 41–73 20% 53% 60% 33%
Screening interviews 9 31–55 56% 56% 22% 44%
Staff interviews 23 25–69 28% 4% 0% 0%

Finally, we recruited a purposive sample of up to 10 staff per site in contact with diabetic
patients including: primary care clinic physicians, nurses, retinal photographers, diabetes educa-
tors, administrative staff, management personnel, ophthalmology clinic clerical staff, and
ophthalmologists. Staff Interviews (n = 23) addressed the following topics: existing procedures
for screening and any regular discrepancies; discussions of their own work; and factors they felt
contributed to (non)adherence. Responses to these questions varied widely, so thematic results
were captured through coding.
Interviews were conducted in Spanish or English, according to the participants’ preferences: ten
were conducted in Spanish, all others in English. Characteristics of the study population are
provided in Table 2. Responses to semi-structured interview questions were coded and analyzed
using Dedoose qualitative data analysis software (Sociocultural Research Consultants, LLC 2016).
Spanish transcripts were translated into English before coding. All transcripts were analyzed
following grounded theory to identify recurrent themes, categories, and expressions (Ryan and
Bernard 2003).
Coding occurred in two steps. A sample of six interviews (two of each type) was coded
independently by CS-M and KB. Applied coding was affirmed through consensus after the third
and sixth coded transcripts. Any revisions to the code list were made at each discussion, and then
only as necessary during the remainder of coding. Frequency and distribution of code applications
was determined for all three interview sets and are provided in Table 3. To help ensure the reliability
of conclusions, themes are drawn from code patterns within and across multiple types of interview
plus observations and chart reviews. This process validates important findings in one source with at
least one other source, and often resulted in discovery of relevant perceptual experiences.

Results
Summarizing across all three types of interview, coding patterns captured several themes in the
data set. First, the process of following up on referrals formed a major barrier for many patients;
second, participants related that communication with treatment providers was rushed or incom-
plete, leaving some confused about the mounting complexity, or distrustful and seeking alter-
native opinions that offered simpler solutions; and third, vision loss irritated complex
socioeconomic challenges to create insurmountable problems over time. Each of these themes
is discussed below.

Scheduling: “I can barely get in [with the specialist, . . . so] I’ll just go to the ER”
Diabetic retinopathy screenings were typically performed in conjunction with a patient’s existing
primary care appointments, thus taking advantage of an opportunity when patients had already
made it to the clinic. Some variation occurred in how the photographers spoke to patients, but we
found the script for explaining the process, the performance of the photographs, and staff advising
patients to call the clinic if they do not hear results within two weeks, to be consistent across all three
clinics. However, it did not appear from our observations and interviews that the prevention or
management of DR received any additional attention or conversation in these sessions.
 MEDICAL ANTHROPOLOGY 113

Table 3. Code Frequency and Distribution by Interview Type

Home interviews Screening interviews Staff interviews
Rank Frequency Distribution Frequency Distribution Frequency Distribution
Frequency with Number of Frequency with Number of Frequency with Number of
which the code Interviews in which which code was Interviews in which which code was Interviews in
was applied across code was applied applied across code was applied applied across the which code was
the data set at least once the data set at least once data set applied at least
(total = 1651) (max = 15) (total = 338) (max = 9) (total = 1379) once (max = 23)
1 Patient Experiences of Patient Patient satisfaction Referral/ Referral/
management of vision loss (15) satisfaction (56) (9) treatment flow treatment flow
diabetes (124) (126) (21)
2 Motivation issues Patient Screening Screening Photographer- Patients
(123) management of experiences experiences specific issues needing/
diabetes (14) (satisfaction) (29) (satisfaction) (8) (101) receiving
education (20)
3 Patient-provider Peer support (14) Patient follow-up Patient follow-up Specialist/ Patient-provider
communication on referrals (23) on referrals (8) ophthalmological communication
(76) treatment (88) (19)
4 Competing Patient Motivation issues Scheduling (7) Patient-provider Staff follow-up
demands (76) understandings/ (20) communication on referrals (18)
misunderstandings (87)
of health
conditions (14)
5 Peer support for Specialist/ Photographer- Patient Work flow issues Motivation
diabetes or diabetic ophthalmological specific issues understandings/ (79) issues (17)
retinopathy (70) treatment (14) (19) misunderstandings
of health
conditions (7)
6 Patient Insurance/ Scheduling (16) Photographer- Motivation issues Staff delivering
understandings/ reimbursement specific issues (6) (68) education (17)
misunderstandings issues (14)
of health
conditions (65)
7 Experiences of Co-morbidities (14) Patient Patient-provider Scheduling (59) Exceptional staff
diabetes (65) management of communication (6) (17)
diabetes (16)
8 Specialist/ Fear and worry (14) Patient-provider Transportation Staff follow-up on Scheduling (16)
ophthalmological communication issues (6) referrals (59)
treatment (62) (12)
The frequency rank is indicative of how many excerpts in the data were tagged with a given code; the distribution indicates how
consistently a code was marked across the interview set.

Interviewer: Were you previously informed about today’s process by any of the people working
here?
Pablo: No.
Interviewer: Not before, during, or after either? After the process?
Pablo: No.

Retinal screening sessions include neither a discussion of the results (usually only available to the
clinic at least 48 hours after screening) nor promotion of eye health generally.

Interviewer: How about any other additional explanations, following the screening?
Anna: Um, yeah, no, I didn’t get any explanations afterwards. Um, he did tell me that, if there
was something wrong, that they would call me.
Interviewer: What will happen, what do you think would happen if, if, uh, when you get the results?
What did they tell you, what are the next steps?
114 C. SMITH-MORRIS ET AL.

John: I hope they don’t say that I have eye cancer or anything. So, uh, if it happens it
happens. So uh, I anticipate them saying that I might need some sort of glasses.

We found no take-home informational materials accessible to patients, a circumstance made

more conspicuous by the fact that providers commonly stated that their patients do not understand
the gravity of losing their eyesight. And although patients are told repeatedly of their responsibilities
to attend follow-up appointments on time, the staff we interviewed affirmed there was little time
devoted to addressing how they might do so and overcome any barriers that might exist. While some
screening staff wanted to motivate patients to return for follow-up appointments, others felt that it
would be inappropriate to make any diagnostic comments, and so they gave minimal information to
patients. In these ways, screening sessions were an example of segmented health care that must be
glued together by patients and caregivers with patience and persistence.
When the screening results indicated a need for follow-up, both patients and clinic staff faced
substantial barriers to scheduling those follow-up appointments.

Interviewer: How satisfied were you with the scheduling process for this screening appointment?
Charlotte: You know what. I’d say about a two, because I had to go downstairs because I forgot
my paper, so I had to go downstairs, and then come back upstairs, and then had to go
back downstairs. And finally I had to come back up here.

In fact, the scheduling system was routinely named as a barrier to follow-up. We witnessed
evidence of this in the home, screening, and staff interviews, as well as in our observations of clinic
flows. During the screenings, although patients were told to contact the clinic for results (if not
received by phone or mail), they were not given a contact phone number or name.
Home interview informants complained that not enough specialists exist or not enough accepted their
insurance plans, while others expressed frustration over the difficulty of navigating the long, pre-
recorded messages of the phone system. And of course, scheduling can be difficult around a work
schedule, especially when the doctor’s office cancels or changes the appointment. Finally, at least 3 of 15
home interview informants attempted to bypass scheduling delays by seeking care in their countries of
origin,1 or going to an emergency room.

Mark: They’re like so busy and slammed. I mean, I can barely get in and get a visit.
Interviewer: How long does it take for you to schedule an appointment?
Mark: Well, you can schedule an appointment and you may get it in, um, 45 days. . .. I’ll just
go to ER. . . because if you do it through the ER first, then when you go to the
[scheduler], they’ll give you an appointment probably within a week.

Staff informants were equally aware of these problems, sometimes intervening to overcome the
scheduling system barriers for their patients. Ever since Lazarus’ (1990) assessment of hierarchy and
accountability in an obstetric/gynecology department, anthropologists have been careful to recognize
that both patients and staff may feel marginalized, unsure of themselves, and dissatisfied in these settings.
We heard accounts of staff who would walk over to schedulers or to other clinics in their building, or
make direct phone calls to other clinics, to personally request that a patient be given an appointment.
Although the screening staff was not permitted to provide diagnostic information to patients, those with
extensive experience were particularly careful about instructing patients to follow-up on their appoint-
ments. It became apparent in primary care clinics that lower level staff members (medical assistants) were
relied upon to ensure both that follow-up occurs and that records about the outcomes are kept. That is,
lower level staff must check with patients about scheduling, and must call eye care providers about when
and whether patients followed up. One exception was Charity Medical Center, which employs optome-
trists both to evaluate the retinal images and contact the patients about referrals. In addition, we heard of
delays from a few weeks up to two-months in the review of screening reports at the family clinics (with
 MEDICAL ANTHROPOLOGY 115

added delays prior to the first available specialty appointments). Such workarounds by staff members,
however, are not a sustainable workflow model.

Patient-provider communication: “And it’s that look, as if ‘nobody’s ever told me about
that’.”
Several home interview informants (n = 5) and staff informants indicated that some aspect of
patient-provider communication was poor, brief, or misunderstood. Most patients had some idea
about the relationship between their diabetes and eyesight, using correct medical terminology and
many using lay descriptions of visual symptoms. But we also heard patients with basic misunder-
standings about a healthy diet, the purpose of medications, or whom to call or when to schedule a
particular type of appointment. Such misunderstandings can lead to unmet expectations about the
availability and effectiveness of health care (Berry 2008; Smith 2000) and was evident in our research.
At a basic level, co-morbidities challenge patients to remember charts full of medical information
and instruction. Below, a doctor describes the experience of encountering a patient that does not
remember being told before about their Hemoglobin A1c level:

Interviewer: So somebody could be Spanish-speaking and English-speaking and you could see sort
of those misunderstandings happening?
Carlos: Most of my patients are Spanish-speaking only. . .. And it is them understanding, . . .
retaining the information also, because a lot of them have had diabetes for years and
then I start talking about their A1C, and it’s just kind of that look, like, “No, I don’t
know what that is. Nobody’s ever told me about it,” which I want to think that
somewhere down the line, that diagnosing, it was explained to them, but just wasn’t
retained. So just trying to meet them at their level also, but explaining things and not
using, well, really complicated medical terms.
Another informant is one of two participants who seemed confused by her eye treatment, and was
seeking care in Mexico where she received a diagnosis more to her liking:

Sabana: My condition so far, they said that, um, they are pretty much, um, weak, um, mostly
from the left side, is the weakest. So—and then, um, they took pictures of me, and, um,
they said that there’s—I, I really don’t understand it very well. . .. No, I am getting very
much information but there’s like some stuff that I still don’t understand. . .
Interviewer: Even if the doctor at Creekview told you that if you did the injections every single
month that your eyesight would not get worse but it would stay the same:
Sabana: It will stay either the same, or least the darkness that is the side won’t go towards my—
Interviewer: Okay. Is that enough of a reason to get you to keep going in?
Sabana: Um, no, because the doctor from Mexico says I don’t need them. So I’d rather, like I
said, right now I don’t want to go back to original center until I figure out [what] the
other doctor from Mexico said. [He said to me:] “You know what? Your eyes are doing
very good. Your, your inflammation has gone away. . .. The way you’re seeing right
now is because this eye is weaker. You need a new prescription for this one, so you can
see exactly the same.” Because this one’s fine but this one’s the weaker one.
Interviewer: Okay. So the doctor in Mexico didn’t say anything about the word “edema, “macular
edema.” He didn’t say anything like that? Do you know that term? Have you ever
heard that word?
Sabana: Edema? I heard it, yeah.
Interviewer: Yeah, macular edema. At Creekview?
116 C. SMITH-MORRIS ET AL.

Sabana: Yes.
Interviewer: But nothing like that from the doctor in [Mexico]?
Sabana: No.
Interviewer: Okay. Or even “retinopathy”?
Sabana: No. I never heard of that word, retinopathy. What is retinopathy?
She was able to express questions and goals clearly, but felt the Creekview doctor may not have
been providing the correct treatment. This example indicates not a failure to explain a diagnosis, but
a conflict in opinion between eye specialists about her condition and a lack of the patient’s
confidence in the treatment plan.
Finally, poor communication from clinic staff produced significant distress for patients, such as:
not being warned ahead of time about the effect of pupil dilation or the need to take off several hours
from work for a procedure; or frustration with medical jargon used by the doctor. When educational
comments or conversations were made, as we witnessed in retinal screening appointments, this
“education” did not consist of two-way conversations or motivational planning, but one-way
recitations and instruction-giving. Evidence of problem-solving and motivational treatment planning
was absent from our observations and from almost all interviews.

The cascade into vision loss

Participants in this research experienced multiple social and health problems in recursive cascade,
including the clustering of diabetes with both diabetes-related morbidities and other co-morbidities,
a variety of contextual and social factors exacerbating the illness experience, and the potential for
adverse disease interaction (Manderson and Warren 2016; Mendenhall 2016). They experience many
of the common challenges for diabetes treatment adherence (e.g., transportation, competing
demands on a patient’s time, and social isolation), but as vision was affected, diabetes care and
health care appointments became unmanageable. Vision-related barriers, such as inadequate signage
or small font instructions or labels, added difficulty to both clinic visits and home care for patients
suffering with diabetes. At home, printed materials and equipment that were small, difficult to find,
or had multiple parts are standard items for diabetes care. Many patients kept their materials in
plastic bags, but others had their equipment and medications strewn in several locations around the
house, or were unable to locate them. Patients frequently could not find, or struggled to find, their
glucometers and strips, and reported increasing difficulty of regular blood glucose monitoring as
vision deteriorated. We also encountered numerous out-of-date medications, which may have been
partly related to vision problems.

Interviewer: Would you say your eyes are your biggest problem now?
Ramira: Yeah, I think so, because I can see everything but I can’t see. I can’t see to read or to fill
paper. So when I go to the doctor’s, my daughter helps me fill the paperwork, because I
can’t see. . . .I can’t see or read —like when I get a letter, I open it and I don’t know
what it says. I have to wait until my daughter comes so she could read it to me.
People identified through DR screening as needing specialty vision care are likely to have multiple
morbidities, multiple medications, and a full and frequent schedule of medical appointments. In our
observations, the following were evident: difficulty in obtaining and taking medication properly;
inadequate stamina for scheduling (and attending) simultaneous dialysis and multiple medical
appointments; and the challenges of making healthy food choices or of exercising with dizziness,
foot pain, or declining vision. The multiplicative effect of these conditions makes DR particularly
hard to manage by patients without adequate support, education, and resources.
 MEDICAL ANTHROPOLOGY 117

Dalila: Yes, because I don’t drive. I used to drive. I used to deliver the newspaper. But when my
nerves right here started acting up, I could no longer drive because I don’t feel my foot.
Sometimes I want to drive, but I press too hard. And [so] I tell them, today I’m not going to
drive, I could crash with someone, kill someone. And they later declared me disabled. They
revoked my driver’s license. So I don’t drive and I call my daughters. I feel bad, I feel bad,
but they do things for me. My son, too.
Additional social, psychological, and cultural barriers to DR screening follow-up expressed by
patients included: family obligations, such as caring for children or grandchildren in the home; the
interference of work schedules or demands with treatment and self-care; social isolation; language
barriers; citizenship issues; and reduced ability to drive or use public transportation.

Adalia: I feel very lonely sometimes because they are over there and I am here. It’s just that when I
came over here, I grew up alongside them. Since I was a young girl, well, I grew up there
with them, and until I was married, I came over here, imagine that too. When I got married,
I was older. I left them over there. I came over here. Imagine that. It was hard for me. . . And
so many years without seeing them and them without seeing me. That’s hard for me. And
well, what am I going to do. I have to become strong. But, well, sometimes . . .I can’t. I can’t
because by myself, well, because it’s been several years. About 17 years that I don’t see them.
And them well, but I do talk to them. I talk to them . . .Yes, I call over the phone. And well
they call me and ask me, well, when are you coming? “Well, we’ll see” I tell them, “I’m going
to see when, because right now I can’t promise you anything”.
These many factors, operating in synergy, created a cascade of morbidities and stressors for many
of our participants, but it was often deteriorating vision that was most debilitating. Loss of vision
promotes dependency on others, which in resource poor settings can be particularly burdensome
(e.g., Sommer et al. 2015). Thus, as vision deteriorates and the need for care and support increases,
participants may become less willing or able to access help. Finally, the repeated efforts in adjusting
to new symptoms and reduced self-care capacity exhaust both patients and their caregivers. The
cycle of unmet needs or incomplete care exacerbates medical conditions until vision is finally lost.

Discussion
This research demonstrates the effects of cascading morbidities both for people with diabetes at risk
for vision loss. Manderson and Warren (2016) have distinguished conditions that span (1) multiple
biomedically diagnosed chronic conditions, (2) social or relational factors, and (3) economic and
practical resources. When such compounding occurs, the analytical framework of “recursive cas-
cade. . . emphasizes the dynamic nature of the conditions, their interactions, and the layered contexts
that produce them” (491). Our research illustrates the complexity of health care for people with
VTDR, and how vision loss produces such recursive cascades. Vision loss is not only a high stakes
and catastrophic diagnosis for people with diabetes, it is also an indicator of health care complexity
with its own corresponding structural challenges.
Our emphasis on VTDR as a high stakes diagnosis emphasizes both the compounding nature of
diabetes-related morbidities and the distinctive trauma and burden of vision loss. Vision-related
barriers grew slowly for our participants, impacting daily activities first in small and later in
substantial ways. The self-care activities, medication management, logistics of multiple appoint-
ments, and dependency on others for transportation and support were negatively affected by vision
loss. Over time, the challenges to self-care and the effects of incomplete, irregular, or delayed care
worsened their medical conditions, and further transformed the social roles and dependencies of our
participants. Even when diagnosis-specific medical care was available and of high quality, it could
118 C. SMITH-MORRIS ET AL.

not slow the cascade of morbidities following vision loss. In short, the single disease framework of
biomedical care failed to protect these patients from the cascade of morbidities or to recognize the
suffering engendered (Weaver et al. 2016) by those recursive effects.
Our findings also point to the incapacity of the safety net health care structures we sampled to
overcome such complex and synergistic barriers to health. For our participants, the likelihood of this
cascade into vision loss lends weight to anthropological critiques of the single disease framework for
diabetes. For patients with diabetes, the risk of vision loss is a steep and slippery slope. Follow-up on
referrals is made increasingly difficult by the large number of separate specialty referrals. Each
additional appointment adds complex health and treatment information, but often lacks needed
education, motivation, or synthesis, fostering a “blunted” reaction in both the sufferer and in
caregivers (Weaver 2016:500). A number of studies of health care structure and services have
recognized aspects of this cascade. Multi-component interventions (Operario and Nemoto 2010),
as well as comprehensive and sustained effort (Gonzalez-Guarda 2013) will be critical to stemming
the cascade once vision loss has been identified. Cascade-stemming improvements might also lie in
physician-to-physician communication (Friedman et al. 2008; Storey et al. 2016; Hahn 2009;
Daskivich et al. 2017), in models of primary care service that address the social and economic
context of patient lives (Epple et al. 2003; Segal et al. 2013), and in the employment of health care
“navigators” (Freeman 2006; Jandorf et al. 2005). Such interventions have been proposed to target
not just the coordination of existing health care services, but also to promote such things as patient-
centered health care (Barry and Edgman-Levitan 2012; Potter 2015), community and social network
mobilization (Smith-Morris 2006a; Ackermann et al. 2008), and relevant public health agendas for
broader reform (Glasgow et al. 1999; Javitt et al. 1994).
For health care providers, cascading morbidities create additional care responsibilities and admin-
istrative tasks. Even when specialty care and technologies exist for patients, the administrative aspects
of the health care, – i.e., the scheduling of appointments, determination of eligibility for services,
management of medical records, completion of forms, etc. – can slow and complicate the professional
response. When these administrative processes go smoothly and efficiently, the various nodes in the
health care system are held together and patients move seamlessly among a diverse collection of
specialists. When they do not – as in the scheduling of VTDR follow-up – the effect can be exhausting.
The psychological and physiological stresses of these efforts form one of the debilitating stressors of the
diabetes experience (Mendenhall 2013; Mendenhall 2016).
Anthropologists have documented how the movement of patients through complex health care
systems is facilitated not just by medical practitioners but also by non-medical caregivers who glue the
disparate parts of health care together. This facilitating work is an inherent part of most biomedical
health care structures, although frequently marginalized, and often ignored (see e.g., Norwood 2006 on
chaplains). As Strathmann et al. described, the waiting room is a place that “embodies tensions between
clinical structure and patient need” (2009:213–214). Here, the distress and emotions of neglect become
poignant for suffering patients, leaving to receptionists and other non-medical caregivers the “emotional
labor” of “calming patients down” (ibid.). Likewise, Berry captured elusive details about Mayan women’s
sense of obstetric clinic care, and reasons for non-attendance, through listening carefully as patients
waited for care (2008). The recognition of non-medical caregiving as part of the health care structure may
be a form of anti-structural positioning that Tjørnhøj-Thomsen and Hansen say can provide transfor-
mative and “re-humanizing effects” for patients (2013:280). In sum, the work to glue together the
disparate and disjointed parts of health care is both under-recognized and under-valued. These gaps
in care allow the cascade toward vision loss to build speed.

Conclusions
Irreparable vision loss should be unnecessary for patients with access to diabetic retinopathy
screening, education, and care, yet it continues to occur at high rates and in varied contexts. Prior
research has identified some factors contributing to poor follow-up to DR screening, but relatively
 MEDICAL ANTHROPOLOGY 119

little attention has been paid to the synergies of cascading morbidities, or to the distinctive trauma
and burden of vision loss on diabetes care and self-management.
We join anthropologists and clinicians who explore the ways in which chronic conditions
multiply to increase poverty, social exclusion, and health problems. We suggest that the biomedical
frame of multiple morbidities in such circumstances is inadequate. Our results suggest that vision
loss in this resource-rich context is more a result of gaps in care than of simple biological sequence.
This finding challenges traditional notions of vision loss simply as a complication of diabetes. In a
more integrated or biosocial model, barriers to care will be recognized as part of the cascading
morbidities of diabetes, not simply the context in which the “real” biological facts emerge.

Notes
1. We did not ask systematically about citizenship or legal residency, so we cannot speak clearly to the ways that
migration, residency status, or other citizenship factors affect our results. But when these factors arose naturally
in interviews, we recognized their clear relationship to access and have noted them for the reader.
2. http://www.chcf.org/publications/2009/03/californias-safetynet-clinics-a-primer.

Acknowledgments
Support in this research was provided by Jennifer See, OD (EyePACS); Kasumi Widner (Google Research); Anna
Sorenson (EyePACS); Vivian Ngo (EyePACS); Amanda Joslin (EyePACS); Kelli Bassett (SMU); and Katie Logsdon
(SMU). Research design assistance and conversation was also provided by Lily Peng, MD, PhD (Google Research).
There has been no prior publication of the study. Approval was obtained from the Riverside University Health System
Medical Center Institutional Review Board IRB.

Conflict of interest
The following conflicts of interest are declared: Dr. George Bresnick and Dr. Jorge Cuadros are both part owners of
EyePACS LLC.

Funding
Funding support came from Google Research and EyePACS, LLC.

Notes on contributors
Carolyn Smith-Morris, PhD, MS, LPC is associate professor in the department of Anthropology at Southern Methodist
University. Her research addresses chronic disease, especially diabetes, among Mexican migrants in the US and
Mexico, and among Native Americans.
George H. Bresnick, MD, MPA is a public health ophthalmologist with many years’ experience addressing the diabetic
retinopathy challenge. He is the Chief Medical officer of EyePACS, LLC, a comprehensive telemedicine company
dedicated to preventing unnecessary vision loss in populations worldwide.
Jorge Cuadros, OD, PhD (medical information science) has been practicing telemedicine-based eye care continuously
since 1994. He developed EyePACS in 2003 and is currently president and CEO of EyePACS LLC, as well as clinical
professor of optometry at the University of California, Berkeley.
Kathryn E. Bouskill, PhD, MPH is an associate social scientist at the RAND Corporation. She has a background in
medical anthropology and social epidemiology. Her research evaluates how novel technologies are shaping the
landscape of public health, particularly in regard to chronic and non-communicable diseases and mental health.
Elin Rønby Pedersen, PhD is a research scientist in Google Inc. where she leads research in the Human Side of Deep
Learning in Health. She has a PhD in Computer Science; over the years she has successfully integrated studies of
people into design and prototyping of new technology.
120 C. SMITH-MORRIS ET AL.

ORCID
Carolyn Smith-Morris http://orcid.org/0000-0002-2202-1588
Kathryn E. Bouskill http://orcid.org/0000-0001-7163-6290

References
Ackermann, R. T., E. A. Finch, E. Brizendine, H. Zhou, and D. G. Marrero
2008 Translating the Diabetes Prevention Program into the community: The DEPLOY pilot study. American
Journal of Preventive Medicine 35(4):357–363.
Barry, M. J. and S. Edgman-Levitan
2012 Shared decision making— Pinnacle of patient-centered care. New England Journal of Medicine 366(9):780–
781.
Berry, N. S.
2008 Who’s judging the quality of care? Indigenous Maya and the problem of “not being attended.” Medical
Anthropology 27(2):164–189.
Cuadros, J. and G. Bresnick
2009 EyePACS: An adaptable telemedicine system for diabetic retinopathy screening. Journal of Diabetes Science
and Technology 3:509–516.
Daskivich, L. P., C. Vasquez, C. Martinez Jr., C. H. Tseng, and C. M. Mangione
2017 Implementation and evaluation of a large-scale teleretinal diabetic retinopathy screening program in the Los
Angeles County Department of Health Services. JAMA Internal Medicine 177(5):642–649.
Epple, C., A. L. Wright, V. N. Joish, and M. Bauer
2003 The role of active family nutritional support in Navajos’ type 2 diabetes metabolic control. Diabetes Care 26
(10):2829–2834.
Ferris, F. L.
1993 How effective are treatments for diabetic retinopathy? JAMA 269(10):1290–1291.
Freeman, H. P.
2006 Patient navigation: A community based strategy to reduce cancer disparities. Journal of Urban Health 83
(2):139–141.
Friedman, D. S., S. R. Hahn, L. Gelb, J. Tan, S. N. Shah, E. E. Kim, T. J. Zimmerman, et al.
2008 Doctor–Patient communication, health-related beliefs, and adherence in glaucoma: Results from the
glaucoma adherence and persistency study. Ophthalmology 115(8):1320–1327.
Glasgow, R. E., E. H. Wagner, R. M. Kaplan, F. Vinicor, L. Smith, and J. Norman
1999 If diabetes is a public health problem, why not treat it as one? A population-based approach to chronic
illness. Annals of Behavioral Medicine 21(2):159.
Gonzalez-Guarda, R. M.
2013 Pushing the syndemic research agenda forward: A comment on Pitpitan et al. Annals of Behavioral Medicine
45(2):135–136.
Hahn, S. R.
2009 Patient-centered communication to assess and enhance patient adherence to glaucoma medication.
Ophthalmology 116(11):S37–S42.
Jandorf, L., Y. Gutierrez, J. Lopez, J. Christie, and S. H. Itzkowitz
2005 Use of a patient navigator to increase colorectal cancer screening in an urban neighborhood health clinic.
Journal of Urban Health 82(2):216–224.
Javitt, J. C., L. P. Aiello, Y. Chiang, F. L. Ferris, J. K. Canner, and S. Greenfield
1994 Preventive eye care in people with diabetes is cost-saving to the federal government: Implications for health-
care reform. Diabetes Care 17(8):909–917.
Keenum, Z., G. McGwin, C. D. Witherspoon, J. A. Haller, M. E. Clark, and C. Owsley
2016 Patients’ adherence to recommended follow-up eye care after diabetic retinopathy screening in a publicly
funded county clinic and factors associated with follow-up eye care use. JAMA Ophthalmology 134
(11):1221–1228.
Kirkizlar, E., N. Serban, J. A. Sisson, J. L. Swann, C. S. Barnes, and M. D. Williams
2013 Evaluation of telemedicine for screening of diabetic retinopathy in the Veterans Health Administration.
Ophthalmology 120(12):2604–2610.
Klein, B. E. K.
2007 Overview of epidemiologic studies of diabetic retinopathy. Ophthalmic Epidemiology 14(4):179–183.
Lazarus, E. S.
1990 Falling through the cracks: Contradictions and barriers to care in a prenatal clinic. Medical Anthropology 12
(3):269–287.
 MEDICAL ANTHROPOLOGY 121

Lee, D. J., N. Kumar, W. J. Feuer, C. Chou, P. R. Rosa, J. C. Schiffman, A. Morante, et al.

2014 Dilated eye examination screening guideline compliance among patients with diabetes without a diabetic
retinopathy diagnosis: The role of geographic access. BMJ Open Diabetes Research & Care 2(1):e000031.
Lee, S. J., C. A. McCarty, C. Sicari, P. M. Livingston, C. A. Harper, H. R. Taylor, and J. E. Keeffe
2000 Recruitment methods for community-based screening for diabetic retinopathy. Ophthalmic Epidemiology 7
(3):209–218.
Manderson, L. and C. Smith-Morris
2010 Introduction. In Chronic Conditions, Fluid States: Chronicity and the Experience of Illness. L. Manderson
and C. Smith-Morris, eds. New Brunswick, NJ: Rutgers University Press.
Manderson, L. and N. Warren
2016 “Just one thing after another”: Recursive cascades and chronic conditions. Medical Anthropology Quarterly
30(4):479–497.
Mendenhall, E.
2013 Syndemic Suffering: Social Distress, Depression, and Diabetes among Mexican Immigrant Women. New
York: Routledge.
——————.
2016 Beyond comorbidity: A critical perspective of syndemic depression and diabetes in cross-cultural contexts.
Medical Anthropology Quarterly 30(4):462–478.
Mtuya, C., C. R. Cleland, H. Philippin, K. Paulo, B. Njau, W. U. Makupa, C. Hall, et al.
2016 Reasons for poor follow-up of diabetic retinopathy patients after screening in Tanzania: A cross-sectional
study. BMC Ophthalmology 16(1):115.
Murchison, A. P., L. Hark, L. T. Pizzi, Y. Dai, E. L. Mayro, P. P. Storey, B. E. Leiby, and J. A. Haller
2017 Nonadherence to eye care in people with diabetes. BMJ Open Diabetes Research and Care 5(1):e000333.
Nguyen, H. V., G. Tan, R. Tapp, S. Mital, D. Ting, H. Wong, C. Tan, et al.
2016 Cost-effectiveness of a National Telemedicine Diabetic Retinopathy Screening Program in Singapore.
Ophthalmology 123(12):2571–2580.
Norwood, F.
2006 The ambivalent chaplain: Negotiating structural and ideological difference on the margins of modern-day
hospital medicine. Medical Anthropology 25(1):1–29.
Operario, D. and T. Nemoto
2010 HIV in transgender communities: Syndemic dynamics and a need for multicomponent interventions.
Journal of Acquired Immune Deficiency Syndromes 55(Suppl 2):S91.
Paz, S. H., R. Varma, R. Klein, J. Wu, and S. P. Azen, and Group Los Angeles Latino Eye Study
2006 Noncompliance with vision care guidelines in Latinos with type 2 diabetes mellitus: The Los Angeles Latino
Eye Study. Ophthalmology 113(8):1372–1377.
Potter, N.
2015 Defiance, epistemologies of ignorance, and giving uptake properly. In Diagnostic Controversy: Cultural
Perspectives on Competing Knowledge in Healthcare. C. Smith-Morris, ed. Pp.147–168. New York:
Routledge.
Quade, R.
2011 Evaluation of the expanding access to diabetic retinopathy screening initiative. Evaluation Report Prepared
by R. Quade and Associates for California HealthCare Foundation. Oakland, CA: California HealthCare
Foundation.
Ryan, G. W. and H. R. Bernard
2003 Techniques to identify themes. Field Methods 15(1):85–109.
Segal, L., M. J. Leach, E. May, and C. Turnbull
2013 Regional primary care team to deliver best-practice diabetes care. A needs-driven health workforce model
reflecting a biopsychosocial construct of health. Diabetes Care 36(7):1898–1907.
Singer, M., N. Bulled, B. Ostrach, and E. Mendenhall
2017 Syndemics and the biosocial conception of health. The Lancet 389(10072):941–950.
Smith, C.
2000 False expectations? Expectations vs. probabilities for dying. Omega Journal of Death and Dying 41(3):157–
185.
Smith-Morris, C.
2006a Community participation in tribal diabetes programming. American Indian Culture & Research Journal 30
(2):85–110.
——————
2006b Diabetes among the Pima: Stories of Survival. Tucson, AZ: University of Arizona Press.
——————
2010 The Chronicity of Life, the Acuteness of Diagnosis. In Chronic Conditions, Fluid States: Chronicity and the
122 C. SMITH-MORRIS ET AL.

Anthropology of Illness. L. Manderson and C. Smith-Morris, eds. Pp. 21–37. New Brunswick, NJ: Rutgers
University Press.
SocioCultural Research Consultants, LLC
2016 Web Application for Managing, Analyzing, and Presenting Qualitative and Mixed Method Research Data.
Dedoose Version 7.0.23. Los Angeles, CA: SocioCultural Research Consultants, LLC.
Sommer, I., U. Griebler, P. Mahlknecht, K. Thaler, K. Bouskill, G. Gartlehner, and S. Mendis
2015 Socioeconomic inequalities in non-communicable diseases and their risk factors: An overview of systematic
reviews. BMC Public Health 15(1):914.
Storey, P. P., A. P. Murchison, L. T. Pizzi, L. A. Hark, Y. Dai, B. E. Leiby, and J. A. Haller
2016 Impact of physician communication on diabetic eye examination adherence: Results from a retrospective
cohort analysis. Retina 36(1):20–27.
Strathmann, C. M. and M. C. Hay
2009 Working the waiting room: Managing fear, hope, and rage at the clinic gate. Medical Anthropology 28
(3):212–234.
Taylor, C. R., L. M. Merin, A. M. Salunga, J. T. Hepworth, T. D. Crutcher, D. M. O’Day, and B. A. Pilon
2007 Improving diabetic retinopathy screening ratios using telemedicine-based digital retinal imaging technology.
The Vine Hill Study. Diabetes Care 30(3):574–578.
Thompson, A. C., M. O. Thompson, D. L. Young, R. C. Lin, S. R. Sanislo, D. M. Moshfeghi, and K. Singh
2015 Barriers to follow-up and strategies to improve adherence to appointments for care of chronic eye diseases.
Investigative Ophthalmology & Visual Science 56(8):4324–4331.
Tjørnhøj-Thomsen, T. and H. P. Hansen
2013 The ritualization of rehabilitation. Medical Anthropology 32(3):266–285.
Walker, E. A., C. B. Schechter, A. Caban, and C. E. Basch
2008 Telephone intervention to promote diabetic retinopathy screening among the urban poor. American Journal
of Preventive Medicine 34(3):185–191.
Weaver, L. J. and E. Mendenhall
2014 Applying syndemics and chronicity: Interpretations from studies of poverty, depression, and diabetes.
Medical Anthropology 33(2):92–108.
Weaver, L. J.
2016 Transactions in suffering: Mothers, daughters, and chronic disease comorbidities in New Delhi, India.
Medical Anthropology Quarterly 30(4):498–514.
Zhang, X., S. L. Norris, J. Saadine, F. M. Chowdhury, T. Horsley, S. Kanjilal, C. M. Mangione, et al.
2007 Effectiveness of interventions to promote screening for diabetic retinopathy. American Journal of Preventive
Medicine 33(4):318–335.
Zoega, G. M., Þ. Gunnarsdóttir, S. Björnsdóttir, Á. B. Hreiðarsson, G. Viggósson, and F. Stefánsson
2005 Screening compliance and visual outcome in diabetes. Acta Ophthalmologica Scandinavica 83(6):687–690.