Fear of the unknown is one of the greatest issues facing patients with glaucoma - the second leading cause of blindness worldwide after cataracts - according to research in the April issue of the Journal of Advanced Nursing . People also worry about how the eye disease, which can be hereditary, will affect other members of their family.
Researchers spoke to 24 people with glaucoma, which can lead to severe restriction of the visual field and irreversible blindness if it is not detected early enough and successfully treated.
It's estimated that 4.5 million people worldwide are blind due to glaucoma, with more than a third of them living in China, where the study – carried out by Fudan University in Shanghai – took place.
"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" says co-author Shu-Xin Xi from the Department of Nursing at the University.
The researchers recruited patients from a specialist eye hospital to find out how glaucoma affected their daily lives and their quality of life, carrying out a combination of in-depth interviews and focus groups. The ten men and 14 women were aged between 23 and 86, with an average age of 43 years. Time from diagnosis ranged from one month to 12 years.
"Although glaucoma is one of the leading causes of blindness in China, all the participants knew little about it prior to diagnosis" says Shu-Xin. "However, once they were diagnosed most of them were eager to seek information and educate themselves as much as possible."
Key findings and comments included:
"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" says Shu-Xin.
"One interesting finding is how Chinese culture can help patients to maintain a healthy lifestyle. More research is needed to find out how healthcare professionals can support patients with glaucoma in China, together with patients from other diverse ethnic, cultural and religious backgrounds around the world."
Notes to editors
Patients' experiences of living with glaucoma: a phenomenological study. Wu et al. Journal of Advanced Nursing . 67.4, pp800-810. DOI: 10.1111/j.1365-2648.2010.05541.x
The Journal of Advanced Nursing (JAN) is an international, peer-reviewed, scientific journal. JAN contributes to the advancement of evidence-based nursing, midwifery and healthcare by disseminating high quality research and scholarship of contemporary relevance and with potential to advance knowledge for practice, education, management or policy. http://onlinelibrary.wiley.com/journal/10.1111/%28ISSN%291365-2648
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Journal of Advanced Nursing