IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v75y2012i6p976-985.html
   My bibliography  Save this article

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

Author

Listed:
  • Bennion, Amy E.
  • Shaw, Rachel L.
  • Gibson, Jonathan M.

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.

Suggested Citation

  • Bennion, Amy E. & Shaw, Rachel L. & Gibson, Jonathan M., 2012. "What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research," Social Science & Medicine, Elsevier, vol. 75(6), pages 976-985.
    • Handle: RePEc:eee:socmed:v:75:y:2012:i:6:p:976-985
    DOI: 10.1016/j.socscimed.2012.04.023
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953612003796
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2012.04.023?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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. Alan Cruess & Gergana Zlateva & Xiao Xu & Gièle Soubrane & Daniel Pauleikhoff & Andrew Lotery & Jordi Mones & Ronald Buggage & Caroline Schaefer & Tyler Knight & Thomas Goss, 2008. "Economic Burden of Bilateral Neovascular Age-Related Macular Degeneration," PharmacoEconomics, Springer, vol. 26(1), pages 57-73, January.
    6. 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.
    7. 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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Elizabeth Benninger & Shazly Savahl, 2017. "A Systematic Review of Children’s Construction of the Self: Implications for Children’s Subjective Well-being," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 10(2), pages 545-569, June.
    2. Jackson, Louise J. & Roberts, Tracy E., 2015. "Conceptualising quality of life outcomes for women participating in testing for sexually transmitted infections: A systematic review and meta-synthesis of qualitative research," Social Science & Medicine, Elsevier, vol. 143(C), pages 162-170.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Maya Maor & Moflah Ataika & Pesach Shvartzman & Maya Lavie Ajayi, 2021. "“I Had to Rediscover Our Healthy Food”: An Indigenous Perspective on Coping with Type 2 Diabetes Mellitus," IJERPH, MDPI, vol. 19(1), pages 1-16, December.
    2. Rebecca J Bartlett Ellis & Janet L Welch, 2017. "Medication‐taking behaviours in chronic kidney disease with multiple chronic conditions: a meta‐ethnographic synthesis of qualitative studies," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(5-6), pages 586-598, March.
    3. Kollerup, Anna & Wadmann, Sarah & Bek, Toke & Kjellberg, Jakob, 2022. "National clinical guidelines and treatment centralization do not guarantee consistency in healthcare delivery. A mixed-methods study of wet age-related macular degeneration treatment in Denmark," Health Policy, Elsevier, vol. 126(12), pages 1291-1302.
    4. Eleri Jones & Ernestina Coast, 2013. "Social relationships and postpartum depression in South Asia: A systematic review," International Journal of Social Psychiatry, , vol. 59(7), pages 690-700, November.
    5. Bjoern Schwander, 2014. "Early health economic evaluation of the future potential of next generation artificial vision systems for treating blindness in Germany," Health Economics Review, Springer, vol. 4(1), pages 1-10, December.
    6. Hansen, Henrik & Trifkovic, Neda, 2013. "Systematic Reviews: Questions, Methods and Usage," MPRA Paper 47993, University Library of Munich, Germany.
    7. Kendall, Elizabeth & Terry, Deborah, 2009. "Predicting emotional well-being following traumatic brain injury: A test of mediated and moderated models," Social Science & Medicine, Elsevier, vol. 69(6), pages 947-954, September.
    8. Shisei Tei & Junya Fujino, 2022. "Social ties, fears and bias during the COVID-19 pandemic: Fragile and flexible mindsets," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-7, December.
    9. Kathleen Ke, 2010. "The direct, indirect and intangible costs of visual impairment caused by neovascular age-related macular degeneration," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 11(6), pages 525-531, December.
    10. Eggly, Susan & Penner, Louis A. & Greene, Meredith & Harper, Felicity W.K. & Ruckdeschel, John C. & Albrecht, Terrance L., 2006. "Information seeking during "bad news" oncology interactions: Question asking by patients and their companions," Social Science & Medicine, Elsevier, vol. 63(11), pages 2974-2985, December.
    11. Carles Campanyà & David Fonseca & Daniel Amo & Núria Martí & Enric Peña, 2021. "Mixed Analysis of the Flipped Classroom in the Concrete and Steel Structures Subject in the Context of COVID-19 Crisis Outbreak. A Pilot Study," Sustainability, MDPI, vol. 13(11), pages 1-20, May.
    12. Livio Garattini & Emanuela Castelnuovo & Paolo Lanzetta & Cecilia Viscarra & Elena Ricci & Fabio Parazzini, 2004. "Direct medical costs of age-related macular degeneration in Italian hospital ophthalmology departments," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 5(1), pages 22-27, February.
    13. Marion Haas & Sandy Fowler, 2006. "A synthesis of qualitative research on cervical cancer screening behaviour: Women?s perceptions of the barriers and motivators to screen and the implications for policy and practice, CHERE Working Pap," Working Papers 2006/7, CHERE, University of Technology, Sydney.
    14. Dijke, Marius van & Cremer, David De, 2011. "When social accounts promote acceptance of unfair ultimatum offers: The role of the victim's stress responses to uncertainty and power position," Journal of Economic Psychology, Elsevier, vol. 32(3), pages 468-479, June.
    15. Dong, Gang Nathan, 2016. "Social capital as correlate, antecedent, and consequence of health service demand in China," China Economic Review, Elsevier, vol. 37(C), pages 85-96.
    16. Michiyo Oka & Wendy Chaboyer, 1999. "Dietary Behaviors and Sources of Support in Hemodialysis Patients," Clinical Nursing Research, , vol. 8(4), pages 302-317, November.
    17. McPherson, Susan & Armstrong, David, 2009. "Negotiating 'depression' in primary care: A qualitative study," Social Science & Medicine, Elsevier, vol. 69(8), pages 1137-1143, October.
    18. Lawless, Michael T. & Tieu, Matthew & Feo, Rebecca & Kitson, Alison L., 2021. "Theories of self-care and self-management of long-term conditions by community-dwelling older adults: A systematic review and meta-ethnography," Social Science & Medicine, Elsevier, vol. 287(C).
    19. Alberto Ferreira & Alexandros Sagkriotis & Melvin Olson & Jingsong Lu & Charles Makin & Fran Milnes, 2015. "Treatment Frequency and Dosing Interval of Ranibizumab and Aflibercept for Neovascular Age-Related Macular Degeneration in Routine Clinical Practice in the USA," PLOS ONE, Public Library of Science, vol. 10(7), pages 1-12, July.
    20. Gill Windle & Robert Woods & David Markland, 2010. "Living with Ill-Health in Older Age: The Role of a Resilient Personality," Journal of Happiness Studies, Springer, vol. 11(6), pages 763-777, December.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:75:y:2012:i:6:p:976-985. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.