So let me find my way, whatever it will cost me, rather than leaving myself in darkness: Experiences of glaucoma in Nigeria

Abstract

Background: Blindness from glaucoma is associated with socio-economic deprivation, presumed to reflect poor access to care and poor adherence to treatment. Objectives: To determine why people with glaucoma are presenting late for treatment and to understand access to glaucoma care. Additionally, we sought to identify what patients and the community know, do and think about the condition and why the poor are the most affected with glaucoma blindness. Design: Study participants were from four communities and two hospitals in Abuja-FCT and Kaduna State, Nigeria. A total of 120 participants were involved, including 8 focus group discussions, 7 in-depth interviews with blind/visually impaired glaucoma patients, 5 rapid direct observation visits with these patients and 13 exit interviews of glaucoma patients in the hospital. The data were analysed using content analysis, interpreting participant experiences in terms of three key steps conceptualised as important in the care pathway: what it takes to know glaucoma, to reach a diagnosis and to access continued care. Results: This article presents multiple narratives of accessing and maintaining glaucoma care and how people manage and cope with the disease. People may be presenting late due to structural barriers, which include lack of knowledge and awareness about glaucoma and not finding an appropriately equipped health care facility. What keeps glaucoma patients within the care pathway are a good hospital experience; a support structure involving family, counselling and shared patients' experiences; and an informed choice of treatment, as well as agency. The high cost of purchasing care is a major factor for patients dropping out of treatment. Conclusion: The findings suggest the need to address economic and social structural drivers as glaucoma presents another case study to demonstrate that poverty is a strong driver for blindness. There is also a need for clear glaucoma care pathways with early case finding in the community, two-way referral/feedback systems, well-equipped glaucoma care hospitals and better eye health care financing.