Fear of the unknown and the effect on family are two of the biggest issues facing people with glaucoma, the results of a new study indicate.

Glaucoma is not a single disorder, but is the name given to a group of eye diseases that damage the optic nerve. This can result in serious vision loss over time. Since this vision loss is permanent, glaucoma needs to be diagnosed and appropriately treated as early as possible to prevent further damage to vision.

Glaucoma is the second leading cause of blindness worldwide, after cataracts. It is predicted that up to 80 million people worldwide will be affected by the condition by 2020.

Chinese researchers interviewed 24 people with glaucoma to find out how it affected their daily lives and their overall quality of life. The 10 men and 14 women were aged between 23 and 86, with an average age of 43. The time since diagnosis ranged from one month to 12 years.

"Despite the large amount of research time and resources that have been spent on glaucoma, there are still few effective treatments and limited interventions to reduce the incidence or progression of the disease," commented one of the study's authors, Shu-Xin Xi , of Fudan University in Shanghai.

The study found that while glaucoma is one of the leading causes of blindness in the world, all the participants knew little about it prior to diagnosis. However, once they were diagnosed, most of them were eager to seek information and educate themselves as much as possible.

The study also found that, not surprisingly, patients worried about going blind and how effective their medication was. They also worried about their families developing the condition.

According to the researchers, the internet was a popular source of information, however, websites often provided contradictory information and patients questioned their credibility. Information on the net was also often too complex to understand and too difficult to read with declining vision.

Peer support was very important as it gave the patients a sense of belonging. In fact, talking to people about how they managed their glaucoma was useful and more practical than the advice they received from their doctors.

The study found that there was a lot of confusion among patients about how to administer their eye drops. Most did it incorrectly and were upset that they had not been shown the right way to do it. Others felt that they did not have enough information about the pros and cons of important treatment, such as laser eye surgery.

The researchers noted that some patients and their families had found practical ways of coping with daily tasks, such as improving the lighting in their homes.

They also pointed out that for those affected, managing their condition was a way of maintaining their independence and not being seen as a burden to their family. Loss of independence was associated with feelings of helplessness, guilt and fear of going blind.

"The glaucoma patients in our study experienced a wide range of emotional and psychological changes and found a number of practical ways to manage their disease and cope with daily tasks," they said.

Details of these findings are published in the Journal of Advanced Nursing.

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