Learning to live with glaucoma: a qualitative study of diagnosis and the impact of sight loss

Glaucoma is a major cause of preventable sight loss. As there are no obvious symptoms in the early stages, when it is most beneficial to start treatment, the key to reducing undiagnosed glaucoma in the community is better case finding among those at higher risk. This qualitative study aimed to identify triggers to self-referral for glaucoma symptoms in a sample from Britain, and to explore the meaning of symptoms for people living with moderate to severe glaucoma. Participants (N=28) reported low levels of awareness of glaucoma prior to their diagnosis, and had assumed that symptoms were the ‘normal’ deterioration of eyesight expected with other morbidity or advancing age. As symptoms have a gradual onset, participants had learnt to cope with diminishing sight ability. However, many reported that such coping was ‘at a cost’, and that managing in a world designed for the well sighted caused problems for activities of everyday living, work and family life. The salience of these problems was shaped primarily by social factors, which framed both the practical consequences of sight loss and their meaning for respondents. Findings from this study suggest health promotion is a priority to increase public awareness of the existence and symptoms of glaucoma among those at high risk, and that more attention could be given to reducing the environmental and social causes of disability.