What do we know about the experience of living with macular degeneration? A systematic review and meta-synthesis.

Age Related Macular Degeneration (AMD) is the leading cause of registerable blindness with a high
medical and societal cost burden. Much of the research examining experiences of living with AMD has
been conducted independently with small sample sizes and has failed to impact on practice. Metasynthesis
of qualitative research can improve the understanding of the experience of living with AMD
by drawing together findings of qualitative studies. This article presents a systematic review and metasynthesis
of qualitative studies investigating the experience of AMD (literature searched up to April 2012;
published studies identified range from 1996 to 2009). The review highlights themes relating to: functional
limitations, adaptation and independence; feelings about the future with vision impairment;
interaction with the health service; social engagement; disclosure; and the emotional impacts of living
with AMD. Attention to the experience of living with AMD can help us to better understand the needs of
patients. This meta-synthesis aimed to bring together the findings of qualitative research studies and
highlights important areas for consideration when caring for patients with AMD. Our findings suggest
that a holistic approach to service provision and support for AMD is needed which takes into account
individuals’ needs and experiences when coping with and adjusting to living with AMD. This support
should aim to reduce stigma, increase social engagement, and develop the psychological resources of
patients with AMD.