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

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.

Experience of Anti-VEGF Treatment and Clinical Levels of Depression and Anxiety in Patients With Wet Age-Related Macular Degeneration

“…Previous literature on this topic is very limited and inconclusive about the frequency of depression in patients at different anti-VEGF treatment stages (9,22,28,34). One possible hypothesis to explain why depression is higher in patients at early stages of treatment is the fact of AMD is 10 often seen as a threatening condition that entails further blindness (50). Patients recently diagnosed with wAMD can therefore have that expectation of going blind.…”

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research

“…However, it is acknowledged that restrictions in journal word limits might cause problems for authors in terms of providing methodological or analytical details (Garip & Yardley, 2011;Walsh & Downe, 2005). Appraisal was not undertaken to exclude articles, but rather to test their contributions to the synthesis and to identify their potential limitations (Bennion, Shaw, & Gibson, 2012;Malpass et al, 2009). …”

Understanding the patient’s lived experience of neovascular age-related macular degeneration: a qualitative study

“…Concurring with reported high levels of treatment compliance 23 participants of this study continued with the treatment even when experiences of pain or discomfort were reported, illuminating a deep association between compliance and fear of blindness. 16,26 A fear of blindness Living with neovascular ARMD: the patient's story C McCloud and S Lake was pervasive in this study population, and more than one participant felt that death would be preferable to living with the limitations of blindness, which was a finding that resonated with suicide ideation following vision loss described by Casten and Rovner in 2008. 18 Ongoing lifestyle limitations described by the participants of this study were similar to findings of other studies of people with significant vision loss.…”

“…In the past qualitative explorations of people's experience of ARMD, generally reported on people with end-stage ARMD, often after significant vision has been lost. 16,17,18 Such studies predated the widespread use of anti-VEGF treatments for neovascular ARMD and were unable to elucidate experiences of people for whom vision loss could be avoided or limited.…”