Social Science & Medicine 55 (2002) 257–267 Learning to live with glaucoma: a qualitative study of diagnosis and the impact of sight loss Judith Green a, *, Helen Siddall b , Ian Murdoch c a Health Services Research Unit, London School of Hygiene & Health, Tropical Medicine, Keppel Street, London WC1E 7HT, UK b Department of Epidemiology and International Eye Health, Institute of Ophthalmology & Moorfields Hospital, 11-43 Bath Street, London EC1V 9EL, UK c Department of Epidemiology and International Eye Health, Institute of Ophthalmology & Moorfields Hospital, 11-43 Bath Street, London EC1V 9EL, UK Abstract 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 ¼ 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. r 2002 Elsevier Science Ltd. All rights reserved. Keywords: Glaucoma; Sight loss; Disabilty; Independence Introduction Over 1 million people in the UK are visually impaired, and about one third of those are registered blind or partially sighted (RNIB, 2000). Glaucoma is the third most common cause of blindness registration in the UK, and has an estimated population prevalence of 3% of those over 49 (Mitchell, Smith, Attebo, & Healey, 1996). Particular sub groups in the population are at higher risk, with age, being of Afro–Caribbean descent and a family history all increasing risk (Mitchell et al., 1996; Sommer, Tielsch, & Katz, 1991). The extent of sight loss in the community is far larger than blindness registra- tion suggests. First, the majority of those diagnosed with glaucoma are not registered blind and second, commu- nity surveys in developed countries suggest that only about half of those with glaucoma have been diagnosed (Coffey & Reidy, 1993; Quigley, 1996). Survey research has identified a range of problems that people with glaucoma may face in managing everyday tasks: Nelson, Aspinall and O’Brien (1998), for instance, reported problems with outdoor mobility, glare and lighting, household tasks and personal care. In the UK, over 80% of glaucoma referrals to specialist services result from screening during routine sight tests (Bell & O’Brien, 1997). A majority of damage from glaucoma is preventable and most of those diagnosed can expect to retain vision *Corresponding author. Tel.: +44-20-7-927-2024; fax: +44- 20-7-580-8183. E-mail address: judith.green@lshtm.ac.uk (J. Green). 0277-9536/02/$-see front matter r 2002 Elsevier Science Ltd. All rights reserved. PII:S0277-9536(01)00169-1