Experiences of glaucoma: Impact on patients and health systems

Dr Fatima Kyari undertook an extensive study to understand the challenges faced in glaucoma care. Below is an adapted overview of the study.

Dr Kyari’s study found that the majority of people do not know about glaucoma, they are not aware when they have it, they do not know where to find care and they are faced with challenges in accessing and maintaining treatment because of poor infrastructure and the high cost of care. A major trigger causing a patient to seek care was advanced sight loss, resulting in a late diagnosis.

Blindness was considered a serious problem among the population studied, however, participants in the study avoided the use of the term ‘blindness’ or ‘makanta’ (Hausa), rather they would say ‘eye problem’ or ‘matsalar ido’ (Hausa). Participants’ description of blindness often indicated a total loss of vision, attaching a morbid reality to it, while those with poor vision did not always define themselves as blind.

Lack of knowledge might have contributed to difficulty in appreciating the possibility of future sight loss if left untreated, even though patients would live with future uncertainties.

It was not only the silent nature of loss of sight due to glaucoma that precluded participants from seeking care early, but also additional factors such as not knowing where to find care and not being able to afford or sustain care. In this study, patients who had more resources and ability to take autonomous decisions, appeared to have found ways to access care, highlighting the issues of inequity in access and quality of care.

Fatima describes a conceptual pathway and how it is linked with priorities for action in establishing and managing glaucoma care. We introduce the concept of structural violence (in reference to economically driven processes and forces that conspire to constrain individual agency in our social world). Understanding this position encourages us to reorient ourselves towards finding solutions, to critically engage with realities and recognise the situation due to structural inequalities and structural barriers, which cause harm, rather than passively accepting these as systemic inequalities.

As you view the video, reflect on how glaucoma is described in your setting? What do you think are the “bottlenecks” in the glaucoma pathway within your setting?