Living with glaucoma: a qualitative study of functional implications and patients’ coping behaviours

BACKGROUND: Sight loss from glaucoma can have a significant impact on functioning and performing everyday activities, but this varies between patients. The purpose of this study was to explore whether patients with glaucoma use different coping strategies in response to their vision loss. METHODS: Audio-recorded semi-structured interviews were conducted with 16 patients (median age: 71 [interquartile range [IQR]: 68 to 77 years]; 50 % female) about their experiences of living with glaucoma. Patients had their glaucoma diagnosis for at least 5 years (range: 6 to 29 years) and had a range of disease severities (median best eye Mean Deviation was −9.1 dB [IQR: −12.9 to −4.1 dB]). A framework approach to analysis was taken whereby data was indexed using manual and computer-assisted methods, with codes applied to depict areas of functioning perceived to be impacted by glaucoma and coping behaviours used in response to these difficulties. RESULTS: In order to maintain independence, some patients increased confidence by making practical changes such as adjusting lighting, using handrails and magnifying glasses, or actively changed aspects of their behaviour such as moving their head and eyes towards known areas of vision loss. Support from friends and family was often used, although some people worried about becoming a burden. Others imposed self-restrictions or gave up activities, thus compromising well-being and independence. Certain coping strategies were linked to time since diagnosis and location of vision loss. The type and quality of information received during clinical appointments, and the potential benefits of communication with other patients, emerged as other important themes. CONCLUSIONS: Results from this qualitative study suggest that the adoption of certain coping behaviours and techniques may help some glaucomatous patients to adapt to their condition. An awareness of coping and adaptive strategies, in addition to the usual clinical tests, may provide a better insight into the impact of disease and help inform future educational and management strategies for glaucoma.