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

Listed author(s):
  • Bennion, Amy E.
  • Shaw, Rachel L.
  • Gibson, Jonathan M.
Registered author(s):

    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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    Article provided by Elsevier in its journal Social Science & Medicine.

    Volume (Year): 75 (2012)
    Issue (Month): 6 ()
    Pages: 976-985

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    Handle: RePEc:eee:socmed:v:75:y:2012:i:6:p:976-985
    DOI: 10.1016/j.socscimed.2012.04.023
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    1. Campbell, Rona & Pound, Pandora & Pope, Catherine & Britten, Nicky & Pill, Roisin & Morgan, Myfanwy & Donovan, Jenny, 2003. "Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care," Social Science & Medicine, Elsevier, vol. 56(4), pages 671-684, February.
    2. Lawton, Julia & Peel, Elizabeth & Parry, Odette & Douglas, Margaret, 2008. "Shifting accountability: A longitudinal qualitative study of diabetes causation accounts," Social Science & Medicine, Elsevier, vol. 67(1), pages 47-56, July.
    3. Penninx, Brenda W. J. H. & Van Tilburg, Theo & Deeg, Dorly J. H. & Kriegsman, Didi M. W. & Boeke, A. Joan P. & Van Eijk, Jacques T. M., 1997. "Direct and buffer effects of social support and personal coping resources in individuals with arthritis," Social Science & Medicine, Elsevier, vol. 44(3), pages 393-402, February.
    4. J. Bonastre & C. Le Pen & P. Anderson & A. Ganz & P. Berto & G. Berdeaux, 2002. "The epidemiology, economics and quality of life burden of age-related macular degeneration in France, Germany, Italy and the United Kingdom," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 3(2), pages 94-102, June.
    5. Murray, Joanna & Banerjee, Sube & Byng, Richard & Tylee, Andre & Bhugra, Dinesh & Macdonald, Alastair, 2006. "Primary care professionals' perceptions of depression in older people: a qualitative study," Social Science & Medicine, Elsevier, vol. 63(5), pages 1363-1373, September.
    6. Kempen, Gertrudis I. J. M. & van Heuvelen, Marieke J. G. & van Sonderen, Eric & van den Brink, Rob H. S. & Kooijman, Aart C. & Ormel, Johan, 1999. "The relationship of functional limitations to disability and the moderating effects of psychological attributes in community-dwelling older persons," Social Science & Medicine, Elsevier, vol. 48(9), pages 1161-1172, May.
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