What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research

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Abstract

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. Meta-synthesis 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 meta-synthesis 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.

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  • Experience of age-related macular degeneration

    Rights statement: NOTICE: this is the author’s version of a work that was accepted for publication in Social science and medicine. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Bennion, AE, Shaw, RL & Gibson, JM, 'What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research', Social science and medicine, vol. 75, no. 6 (2012) DOI http://dx.doi.org/10.1016/j.socscimed.2012.04.023

    Accepted author manuscript, 106 KB, PDF-document

Details

Original languageEnglish
Pages (from-to)976-985
Number of pages10
JournalSocial science and medicine
Volume75
Issue number6
Early online date21 May 2012
DOIs
Publication statusPublished - Sep 2012

Bibliographic note

NOTICE: this is the author’s version of a work that was accepted for publication in Social science and medicine. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Bennion, AE, Shaw, RL & Gibson, JM, 'What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research', Social science and medicine, vol. 75, no. 6 (2012) DOI http://dx.doi.org/10.1016/j.socscimed.2012.04.023

    Keywords

  • ageing, vision loss, meta-synthesis, age related macular degeneration

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