HIGHLIGHTS
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Participants in a free glaucoma screening program in a community clinic identified cost and issues with transportation as impediments to utilizing eye care.
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Motivations to attending the free MI-SIGHT glaucoma and eye disease screening program included affordability, location within the community clinic, and a trusted referral source.
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Positive rapport with the program staff was mentioned by every participant and was a critical facilitator both in participants referring their friends and family to the program and overall satisfaction with the program.
Purpose
To use community engaged research to understand barriers to eye care utilization and explore participant experiences with free glaucoma screenings through the Michigan Screening and Intervention for Glaucoma and eye Health through Telemedicine (MI-SIGHT) program.
Design
Qualitative study.
Subjects, Participants, and/or Controls
Purposive sampling of 42 participants out of 254 total participants from 2 community clinics in Flint and Ypsilanti, Michigan enrolled between 10/29/21 and 12/22/21.
Methods, Intervention, or Testing
We conducted semi-structured interviews that explored past barriers to eye care, motivations for attending and overall experience with the MI-SIGHT program. Interviews were transcribed then coded using Grounded Theory; and thematic analysis was completed.
Main Outcome Measures
Themes were compared between (1) the 2 clinics; (2) those who did and did not screen positive for glaucoma; and (3) of those who screened positive for glaucoma, comparing between those randomized to standard care and those randomized to personalized coaching and education.
Results
The most common past barriers to eye care included cost, insurance status, and transportation. Motivations to attending glaucoma screenings with the MI-SIGHT program included affordability, location of community clinics, and having a trusted referral source endorse the program. Overall, participants most valued the rapport and communication received when interacting with the ophthalmic technicians who also acted as care navigators as part of MI-SIGHT.
Conclusions
The MI-SIGHT program was able to address barriers such as cost and transportation through having free eye screenings located at the community clinic. Developing trust and rapport with the participants and the community clinics was critical to the program’s high satisfaction rates.
Introduction
A ccess to quality eye care remains a critical issue for underserved populations, especially those at higher risk for conditions such as glaucoma. Glaucoma, a leading cause of irreversible blindness in the world, disproportionately affects Black Americans and those living with lower socio-economic status. The prevalence of glaucoma in the United States is expected to grow from 3.1 million people to 4.2 million by 2030. , Despite these serious health risks, many people in these high-risk communities face significant barriers to accessing eye care, as over 50% of people with glaucoma will remain undiagnosed and untreated using our current screening and detection programs. The National Academy of Science, Engineering & Medicine (NASEM) issued a call to action to address these barriers and improve eye health in underserved populations and address disparities to minimize vision loss in the United States. Since glaucoma is a leading cause of blindness in the United States, scientists and clinicians are centering attention towards improving glaucoma detection, diagnosis and care.
Community-engaged research (CER) provides an opportunity for understanding and addressing these barriers by directly involving communities in the research who have populations at high risk of disease. CER aims to bridge the gap between the research and the targeted population the research is intended to reach. By learning from community members how to best enhance their experience in glaucoma and eye disease screening, a CER framework can help tailor interventions to the unique needs and preferences of the community.
The Michigan Screening and Intervention for Glaucoma and Eye Health through Telemedicine (MI-SIGHT) program used the principles of CER to help design the program to address disparities in eye care access and outcomes. Currently, glaucoma screenings take place in eye doctors’ offices when a person comes in for routine eye care. However, eye doctors’ offices are often distant from the homes and trusted care providers of those who are uninsured and medically underserved. Navigating to a separate eye clinic away from trusted clinics can raise significant logistical, socioeconomic, and psychological barriers to accessing glaucoma screening. Telemedicine could enable specialty glaucoma screening programs to be available at trusted local primary care community clinics, making high-quality glaucoma screening much more accessible for populations at high risk of disease. The MI-SIGHT program integrates telemedicine into 2 trusted community clinics – a free clinic and a Federally Qualified Health Center – making glaucoma screening more accessible to populations that might otherwise face significant barriers to specialized care. Embedded within the MI-SIGHT program is a randomized controlled trial testing whether personalized coaching and care navigation compared to written education and care navigation improve recommended attendance at follow for those who screen positive for glaucoma.
While the primary goal of the MI-SIGHT program is to improve glaucoma and eye disease detection, the focus of this paper is on the qualitative outcomes related to community engagement and identifying barriers to care. Specifically, this paper centers on the participant’s experiences with the program and the broader impact of community-based interventions on care utilization. The study has 3 primary objectives: 1) to understand barriers to past eye care utilization and motivations for participating in the current eye disease detection program; 2) to assess participants’ experiences with the MI-SIGHT program, and 3) to compare experiences of participants who screened positive for glaucoma/suspected glaucoma who were randomized to either receive personalized coaching and care navigation or receive standard written education and care navigation.
METHODS
Study sites
The Michigan Screening and Intervention for Glaucoma and Eye Health (MI-SIGHT) Program is provided with a partnership between the University of Michigan Kellogg Eye Center, the Hope Clinic, a free clinic in Ypsilanti, MI, and the Hamilton Clinic, a Federally Qualified Health Center (FQHC) in Flint, MI. The MI-SIGHT Program operates during regular clinic hours to increase the ease of scheduling and improve accessibility compared to other screening initiatives that come with mobile services but are only available on limited dates. The Hope Clinic serves approximately 5000 patients per year and the Hamilton Clinic serves approximately 25,000 patients per year. As a free clinic, the Hope Clinic serves a population that is under-insured and uninsured, while Hamilton Clinic primarily serves a population insured by Medicaid but also serves those without insurance.
MI-SIGHT structure and motivational interviewing-based coaching program
At the 2 community clinics, the ophthalmic technician performs the ophthalmic testing and imaging and then transmits the data through the electronic medical record to the readers (eye doctors at the University of Michigan). The readers interpret the testing and send recommendations for further care to the technician, who communicates the recommendations to the participant. The MI-SIGHT program offers low-cost glasses starting at $12 for single vision lenses and $30 for bifocals through a publicly available internet-based retailer (Zennioptical.com). This service provides a tangible reason for people to participate in the glaucoma screening. If a participant requires further ocular health follow-up care, the MI-SIGHT program provides education and assistance with care navigation. Those who screen positive for glaucoma/glaucoma suspect are randomized to receive either standard written education and care navigation or personalized coaching and care navigation. The technician uses motivational interviewing and a tailored online educational program to identify barriers, provide education and evoke motivation to attend recommended glaucoma follow-up visits in the intervention arm. Motivational interviewing (MI) is a collaborative style of communication that guides people towards finding the intrinsic motivation to facilitate a behavior change. One of the first tenets of establishing an MI-based relationship is establishing rapport between the patient and provider. Technicians are trained in glaucoma-specific motivational interviewing and receive booster sessions.
Study population and interview process
Participants were recruited between 10/29/21 and 12/22/21, when a total of 254 participants were enrolled in the MI-SIGHT program study. When research assistants were available, consecutive participants were approached to assess their interest in completing a 20-30 min semi-structured interview ( Appendix A ) and receiving an honorarium of $20 following their MI-SIGHT program study visit. Only MI-SIGHT participants who spoke English were eligible to participate in the interviews and informed consent was obtained from all participants. The interviewer explored motivations to attend the MI-SIGHT appointment, barriers to past eye care use, and overall experience with the program. All interviews were audio recorded and transcribed verbatim, and the data gathered contained no identifiers; the study was approved by the University of Michigan Institutional Review Board.
To determine the sample size for the interviews, we followed the principle of thematic saturation in qualitative research, which suggests that thematic saturation, or the point at which no new ideas or themes are brought up by participants, is the point at which the research should conclude, and this has been found to be on average 9-17 interviews. The goal was to recruit enough participants for interviews to reach thematic saturation, which was reached after 13 participants. We continued enrolling participants until we had at least ten participants represented in each stratum to ensure that we could understand perspectives from participants from each of the following groups from both the free clinic and Federally Qualified Health Center (FQHC): (1) those who screened positive for glaucoma and were randomized to personalized coaching, 2) those who screened positive for glaucoma and were randomized to standard education, 3) those who had no evidence of glaucoma on screening ( Figure 1 ).
Analysis
All interviews were transcribed verbatim and coded by 2 researchers using the principles of grounded theory, an inductive approach, to extract themes. Grounded theory is a qualitative research methodology focused on deriving theories from the data collected. Rather than starting with a hypothesis, grounded theory begins with data collection and follows an iterative approach to discovering themes or relationships among concepts within the data to build theory. Researchers followed the step-wise approach of grounded theory: (1) familiarization, (2) open coding, (3) axial coding, (4) focused coding, and (5) theory building. Following the completion of all interviews, 2 coders (MS, EW) read through all transcripts to familiarize themselves with the content, and then took notes describing participants’ experiences using open coding. A code book was generated as a larger research team using axial coding to identify and define recurring concepts from the semi-structured interviews. Then, working separately, the 2 coders (MS, EW), used the codebook to code the transcripts. A third party (PANC) was brought in to help resolve any inconsistencies between the coders when a consensus could not be reached. Once >80% agreement was achieved on >95% of the codes, the 2 coders re-analyzed and coded the remaining transcripts. The total number of times a given code was expressed and the number of patients who commented on them was tallied. Themes were qualitatively and quantitatively compared between participants at the 2 clinics, participants who did and did not screen positive for glaucoma/suspected glaucoma, and participants who were screened positive for glaucoma/suspected glaucoma and were randomized to either the intervention or control arm of the trial. The qualitative analysis used Dedoose 8.3.17 (Los Angeles, CA).
RESULTS
We approached and enrolled a total of 42 participants (100% participation rate. Of the 42 interviewed, 22 were from the free clinic and 20 were from the FQHC. We ultimately included 22 participants who screened negative for glaucoma, 20 participants who screened positive for glaucoma, and among those, 10 who had been randomized to personalized coaching and care navigation and 10 who had been randomized to standard education and care navigation ( Figure 1 ). These sampling strata met the purposive sampling goals. The median age of participants was 58.7 (range 27-90). Fifteen participants self-identified as male and 27 as female. 57.5% of participants identified as Black ( n = 23), 32.5% as White ( n = 13), 5% as Asian ( n = 2), 5% as Other race ( n = 2), and 3% identified as Hispanic or Latino. The demographic information is summarized in Table 1 .
| Continuous Variable | Mean (SD) | Min, Max |
|---|---|---|
| Age (years) | 58.7 (14.9) | 27.3, 90.1 |
| Categorical Variable | Frequency (%) | |
| Screening Result for Glaucoma | ||
| Positive | 20 (47.6) | |
| Negative | 22 (52.4) | |
| Treatment Arm | ||
| Control (Standard Education) | 10 (50.0) | |
| Intervention (Personalized Education) | 10 (50.0) | |
| Gender | ||
| Male | 15 (35.7) | |
| Female | 27 (64.3) | |
| Ethnicity | ||
| Hispanic | 1 (3.0) | |
| Non-Hispanic | 32 (97.0) | |
| Race | ||
| White | 13 (32.5) | |
| Black | 23 (57.5) | |
| Asian | 2 (5.0) | |
| Other | 2 (5.0) | |
| Education | ||
| <HS | 3 (7.3) | |
| HS | 5 (12.2) | |
| Some College | 20 (48.8) | |
| College Degree | 7 (17.1) | |
| Grad Degree | 6 (14.6) | |
| Income | ||
| <$10k | 9 (26.5) | |
| $10k-$19,999 | 10 (29.4) | |
| $20k-$29,999 | 7 (20.6) | |
| $30k-$49,999 | 2 (5.9) | |
| $50k-$69,000 | 1 (2.9) | |
| $70k+ | 5 (14.7) | |
| Medical Insurance | ||
| No | 7 (16.7) | |
| Yes | 35 (83.3) | |
| Dilated eye exam | ||
| ≤2 years | 17 (54.8) | |
| >2 years | 14 (45.2) | |
Thematic saturation was reached after analyzing thirteen of the forty-two interviews; at this point no new themes were identified from additional interview transcripts, but all were analyzed to ensure sufficient content in each sub-group. The kappa value for inter-rater reliability between the 2 coders was 0.87. The main themes that arose were rapport, overall program satisfaction, eyeglasses satisfaction, and communication. Each theme had both positive and negative valences with the coded text tallied by valence in Figure 3 . Within previous barriers to accessing eye care and motivations for participating in the MI-SIGHT program, previous barriers and specific motivations were identified and these are tallied and visualized in Figure 2 A and B.
Barriers to accessing eye care among a medically underserved population
Cost : Cost was the most significant barrier that participants faced to receiving eye care; it was mentioned 32 times ( n = 22/42). Participants cited the high price of eyeglasses and lack of insurance coverage as the main cost-related barriers. One participant shared how the high prices even with insurance prevented them from wearing eyeglasses “I picked out 1 of the cheapest [eyeglasses] and it was still going to be like 200 and something dollars after the insurance scripted. So that’s why I didn’t.” A few participants cited financial concerns and loss of insurance coverage due to the COVID-19 pandemic as a barrier to care, and this was illustrated in the quote “Due to the whole pandemic thing, I lost my job that I had for 21 years and including my insurance,” and “[s]ince COVID, my business was shut down and it is now bankrupt.” For some participants with insurance coverage, high copays for eye exams despite insurance hindered them from scheduling appointments. A participant commented on this when they said, “I went to my ophthalmologist … and they said pay a $60 fee. I am a low-income mom, low-income grandma, and a widow, and I didn’t have it.”
Schedule: Scheduling was mentioned 9 times as a barrier ( n = 8/42). Participants discussed difficulty scheduling around work and school and the inability to take days off due to financial constraints. One participant described their situation as “I could have probably gone to the VA, but I was just too busy… So every day I really didn’t take a day off. Yeah, I worked all the time because I was always playing catch up on bills or whatever.” Another participant shared their experience with work schedules as a barrier when they said “I think just having to make the schedule of working full time. That was the hardest part. I would kind of feel guilty taking time off of work and hours available.”
Treatment Avoidance: Treatment avoidance was mentioned 9 times as a barrier ( n = 7/42). Treatment avoidance was discussed as emotional factors that hindered a participant’s ability to receive care. Emotional factors included pride, fear, embarrassment, and guilt. One participant shared how they avoided scheduling appointments because “it’s really hard to accept help when you need it” with others speculating that people may avoid treatment because they “don’t want nobody to know that they don’t have any insurance or that type of thing … their pride gets in their way.”
Remaining Barriers: Transportation was mentioned 6 times as a barrier to care ( n = 5/42). Participants discussed long distances from clinics and difficulty coordinating transportation with ride-share services and buses. One participant shared that it was often difficult for them to attend appointments on time with the free and reduced cost ride-share services available because “it was a little uncomfortable because I had to ride the YourRide. Sometimes it was early, and sometimes they would pick me up late.” Others using the same services would sometimes experience last minute ride cancellations that would prevent them from attending their appointments, as 1 participant said, “they might call a day before or 2 hours early and say they can’t give her a ride.” One participant shared how their lack of transportation was a barrier to obtaining eyeglasses when they said, “when we were able to get glasses at work, you’d have to go to a designated place… and if you didn’t have a car, you were just kind of screwed.” Childcare and elder care was mentioned 3 times ( n = 3/42) as a barrier to care. Participants mentioned family obligations and a lack of child or elder care as getting in the way of attending their appointments. One participant shared their experience “I had to work … I had to watch the kids. I couldn’t afford [childcare].”
Motivations to participate in a free eye disease screening program
All participants mentioned at least 1 motivator for participating in the MI-SIGHT Program ( Figure 2 B), including affordability, convenient location, trusted referral source, low cost and high quality of eyeglasses, accessibility in terms of the community clinic sites being on the bus lines, receiving a medical doctor’s review of their eye health, trust in the university, and personal issues with their eyes or their family’s eyes motivating them to seek care.
Affordability : Affordability was the most frequently mentioned motivation for participants coming to the MI-SIGHT program, as it was mentioned 67 times ( n = 29/42). Participants discussed that the free exam allowed them to receive care that they might not have received otherwise. This sentiment is reflected in the quotes “I’m unemployed and have no income, it was a great opportunity for me to get my eyes checked” and “It’s free and it’s an excellent exam, thorough… Cause I know people who don’t have, you know, they can’t afford to get their eyes checked.” Many participants acknowledged the absence of a copay as a motivator to seek out care they needed, with 1 participant sharing that “I was excited because I wasn’t intimidated by a lot of money, prices and I was happy, eager to get my eyes checked.”
Location: The location of the 2 community clinics played an important factor, as it was mentioned as a motivation 54 times ( n = 36/42). Participants commented on the close proximity of the clinics and access to bus routes as motivations, with some sharing that “[Hamilton] was right up the street from my house” and “I can walk or have a friend drive me.” One participant shared, “even if you don’t have a vehicle, [Hope Clinic] is right on the bus route so it drops you off right in front there.” The location of the clinics provided participants with multiple transportation options to help ease any transportation barriers, with someone stating that the community clinic was “a lot more convenient. And you know, I could get a neighbor to take me down to Hamilton” instead of using the ride-share services they had used to get to other appointments. Another participant discussed the importance of the clinic location when scheduling their appointments as they said, “I had been to other eye doctors … But like I said, this was right in my neighborhood so I was even more interested.”
Trusted Referral Sources: Trusted referral sources to the program were mentioned 47 times as a motivation ( n = 39/42). These referral sources mostly included family or friend recommendations. Word of mouth was how 1 participant discovered the program, as they said “[My wife] told me about [the MI-SIGHT program], that her cousin told her about it, that her friend told her about it. So, I’m telling other people about it.” Some participants discovered the program through their doctor or another staff member at the clinic, while others found advertisements such as flyers through trusted sources. A participant shared that “If it wasn’t for [Hope Clinic] calling me up to help me make the appointment I don’t think I would have like ended up here.”
Eyeglasses: Affordable eyeglasses were discussed as a motivation 42 times ( n = 24/42). Many participants commented on the high price of eyeglasses and mentioned how they had been going without wearing glasses even though they needed them. For example, 1 participant expressed “I was driving around with no lenses in my glasses … I mean, I had to. I had no money to buy glasses” and another “I just went without [glasses] because I couldn’t afford it.” Because of the low-cost of the eyeglasses offered through MI-SIGHT, another participant shared that the program “allows someone who has no income to be able to go get glasses.”
Eye Health: Eye health as a motivation was discussed in 2 contexts 55 times total: eye health problems or eye health prevention ( n = 34/42). Participants expressed how personal and/or family eye health affected their motivation to seek out care. Participants mentioned how they were motivated to seek out glaucoma care due to personal problems with their eyesight and symptoms of other eye diseases. One participant shared “I started having problems where I wouldn’t see stuff then would trip over it. My peripheral side vision was bad. I stopped driving because I was afraid I would have a bad accident because I just wouldn’t see stuff coming from the sides.” Other participants mentioned how a family member’s experience with glaucoma or other eye disease motivated them to seek out glaucoma care in the hope of preventing future problems. One patient recounted “I have relatives who have glaucoma and because of my grandmother and my uncle, both went blind … so I was interested in getting on top of everything before it became a crisis.”
Remaining motivations
Accessibility of the program was mentioned 35 times ( n = 18/42). Participants commented on the ease of scheduling and appointment availability, with 1 participant sharing how much they appreciated scheduling an appointment “within a week or 2 […] you know, it wasn’t 30 days or 2 months out.” Furthermore, program inclusivity proved to be a motivating factor for many. One participant shared that the program is accessible to all, “It doesn’t matter where you work, if you have insurance, if you don’t have insurance” while also commenting that when “people don’t have insurance, so they don’t get their eyes checked or done.”
Telemedicine/MD review was mentioned 31 times as a motivation ( n = 28/42). Participants discussed feeling comfortable with receiving their eye exam and results from the technician, and knowing a doctor was reviewing their exams remotely. This was illustrated when 1 participant said “I think because the doctors going to look over the information to make sure everything is what was said. So I felt comfortable.”
Affiliations with the community clinics and the University of Michigan Kellogg Eye Center were identified 31 times as motivations ( n = 16/42). Participants felt comfortable with the community clinics, as they were established in their neighborhood as “community oriented” and “good local facilities.” Trust with the University of Michigan and the Kellogg Eye Center was reflected in the quotes “you guys are associated with the university and I mean, I figured I would get the best care” and “with Kellogg being involved, I knew it was going to be top notch.”
Experience with the MI-SIGHT program
Rapport
Rapport was mentioned by all 42 participants, a total of 117 times, with 113 mentions displaying positive feedback ( Figure 3 ). Participants discussed how the staff’s professional, patient, and friendly demeanor elevated their experience with the program. One participant shared how important it was for them that the technician “treated [me] like a person.” During the study visit, participants valued how much the technicians seemed to enjoy their role, as 1 mentioned “I like that she likes what she’s doing, and it shows by how much she cared” and another stated that “he was great at his job, and it was pretty obvious that, you know, he cared.” The observed job satisfaction of the technicians made participants feel more comfortable and satisfied with the care they were receiving. Overall, the positive rapport from the study staff was paramount in program satisfaction as was reflected through a participant’s statement, “Like, that’s why I wanted to come back and do it because you guys are so nice.”
