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The patients’ view
- Aim:The aim of this meta-synthesis is to find out what it means for patients with age-related macular degeneration to live with visual impairment, how they cope with the illness and how they experience their medical care, including vascular endothelial growth factor inhibitor therapy. Method:Inclusion criteria: qualitative studies exploring patients' experiences with age-related macular degeneration in their daily lives and with medical care, published in journals in English or German. The included studies were analysed following the rules and principles of grounded theory. Results:For the analysis, twenty-four articles matching the inclusion criteria were identified. Three main analytic themes emerged from the included studies: (i) a life shaped by losses; (ii) the burden of medical treatment; and (iii) coping with vision loss. For patients, visual impairment/vision loss means living with multiple losses in various domains of life. With the introduction of vascular endothelial growth factor inhibitor therapy, patients withAim:The aim of this meta-synthesis is to find out what it means for patients with age-related macular degeneration to live with visual impairment, how they cope with the illness and how they experience their medical care, including vascular endothelial growth factor inhibitor therapy. Method:Inclusion criteria: qualitative studies exploring patients' experiences with age-related macular degeneration in their daily lives and with medical care, published in journals in English or German. The included studies were analysed following the rules and principles of grounded theory. Results:For the analysis, twenty-four articles matching the inclusion criteria were identified. Three main analytic themes emerged from the included studies: (i) a life shaped by losses; (ii) the burden of medical treatment; and (iii) coping with vision loss. For patients, visual impairment/vision loss means living with multiple losses in various domains of life. With the introduction of vascular endothelial growth factor inhibitor therapy, patients with neovascular age-related macular degeneration have a good chance of slowing down the disease progression; therapy does, however, also represent a major burden. Conclusion:New strategies need to be conceived to reduce the burden of medical treatment and to improve the dissemination of information about age-related macular degeneration.…
Author details: | Anne ThierORCiD, Christine HolmbergORCiDGND |
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DOI: | https://doi.org/10.1080/09638288.2020.1775901 |
ISSN: | 0963-8288 |
ISSN: | 1464-5165 |
Pubmed ID: | https://pubmed.ncbi.nlm.nih.gov/32574120 |
Title of parent work (English): | Disability and rehabilitation : an international, multidisciplinary journal |
Subtitle (English): | age-related macular degeneration and its effects : a meta-synthesis |
Publisher: | Taylor & Francis Group |
Place of publishing: | Abingdon |
Publication type: | Article |
Language: | English |
Date of first publication: | 2020/06/23 |
Publication year: | 2020 |
Release date: | 2023/03/16 |
Tag: | Age-related macular degeneration; endothelial growth factor inhibitor therapy; meta-synthesis; patients' experiences; qualitative research; vascular; visual impairment |
Volume: | 44 |
Issue: | 5 |
Number of pages: | 11 |
First page: | 661 |
Last Page: | 671 |
Funding institution: | transnational E-RARE grant `CCMCURE (DFG)European Commission [SFB958]; E-RARE [ERL 138397]; Canadian; Institutes for Health ResearchCanadian Institutes of Health Research; (CIHR) [PJT 153000]; the E-RARE grant `CCMCURE |
Organizational units: | Humanwissenschaftliche Fakultät / Strukturbereich Kognitionswissenschaften / Department Sport- und Gesundheitswissenschaften |
DDC classification: | 6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit |
Peer review: | Referiert |