Disease perception and experience in people with diabetic retinopathy: A qualitative study

Abstract

Aim: The aim of this study was to investigate the lived experience of people with diabetic retinopathy and to understand the impact of the disease on them including the practical problems faced in the day-to-day life. Design: Descriptive qualitative research. Methods: A convenience sample of 11 patients with diabetic retinopathy who were hospitalized in a tertiary hospitals in Shandong province of China were enrolled. Data were collected using semi-structured in-depth interviews. The six-stage thematic analysis of Braun and Clarke was used for data analysis. Results: Three themes and 12 sub-themes were extracted, namely: countdown to darkness (lack of disease knowledge, bystander's perspective, distrust of grassroots hospitals); Endless abyss (action restrictions, social isolation, stigma, lost of meaning in life, catastrophizing explanations, a heavy burden); Light chaser (craving for light, turning points in behaviour, self-adjustment).