Abstract
Purpose :
Diabetic retinopathy (DR) is a leading cause of blindness in working-age people in the US. DR is more prevalent and diagnosed at more severe stages in racial and ethnic minorities and low resource communities. Our group developed a framework to organize determinants of DR screening in a high-risk population. The purpose of this study was to evaluate this framework to identify additional barriers to and facilitators of DR screening applicable to those with severe disease.
Methods :
We conducted individual semi-structured, qualitative interviews of participants with a history of laser or surgery for DR at an urban, academic health center. We recorded select demographic information of each participant. After the interview, participants were compensated with a monetary gift card. Interviews were recorded, analyzed, and organized in comparison to the initial framework based on grounded theory. To conduct a participatory evaluation, we recruited and trained a community stakeholder to analyze four transcripts. The study authors discussed evaluation findings, synthesized poignant themes, and proposed interventions.
Results :
A total of 28 participants were included in the final analysis. Four additional participants were required for the severe disease cohort to reach theoretical saturation. Eleven participants identified as female and 17 identified as male. Participants identified as Black (17), White (4), Hispanic/Latinx (4), and other/no answer (3). The original coding framework themes remained relevant (Figure 1). Themes were organized into two categories: individual (vision status, competing concerns, emotional context) and structural factors (resource availability, cues to action, knowledge-creating experiences, and in-clinic experience). The patient-doctor relationship was an additional theme present in the severe cohort analysis. During the participatory evaluation, the community stakeholder highlighted examples of select themes, in addition to possible interventions (Figure 2).
Conclusions :
We present participatory evaluation as a means of reviewing a framework to identify barriers and facilitators to diabetic retinopathy screening in a high-risk population. The emergence of poignant themes and possible interventions emphasize the importance of participatory research in understanding social determinants of diabetic retinopathy.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.