Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration

Abstract Background Age-Related Macular Degeneration (AMD) is an eye disease associated with age that causes progressive and irreversible loss of central vision, while the peripheral visual ability remains. The occurrence of and especially late AMD is estimated to increase extensively to 2040 among...

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Main Authors: J. Källstrand, E-C. Lindgren, I. M. Carlsson
Format: Article
Language:English
Published: BMC 2024-01-01
Series:BMC Geriatrics
Subjects:
Online Access:https://doi.org/10.1186/s12877-024-04689-9
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author J. Källstrand
E-C. Lindgren
I. M. Carlsson
author_facet J. Källstrand
E-C. Lindgren
I. M. Carlsson
author_sort J. Källstrand
collection DOAJ
description Abstract Background Age-Related Macular Degeneration (AMD) is an eye disease associated with age that causes progressive and irreversible loss of central vision, while the peripheral visual ability remains. The occurrence of and especially late AMD is estimated to increase extensively to 2040 among persons aged ≥ 65 in Scandinavia, due to an increasing aging population. Objectives The present study explored what it means to live with AMD through the eyes of those living with the condition. Methods This is an explorative interview study. People who were ≥ 65 years old, living in their own homes, and diagnosed with advanced dry AMD in one or both eyes, causing a visual acuity of no more than 0.3 or worse in the best eye, were invited to participate in the study. The method chosen was the constructivist grounded theory, where reality is seen as fundamentally social and processual and a way of accessing the participants’ experiences, thoughts, and feelings. Results In total, 12 interviews were conducted. Living with dry AMD confronted different problems and challenges. The substantive theory, Perpetuating ability to live life as usual, is characterised by a desire to continue life as usual, which requires an acceptance of the disease’s progress, self-acceptance of the new me, and an acceptance that the new life needs to be lived a little more carefully. Moreover, the participants used three strategies to resolve their main concern by maintaining an everyday life 1) Navigating the new normal, 2) Trusting own ability, and 3) Interdepending. Conclusion Maintaining an everyday life is the primary concern among people with AMD. In supporting self-care, gaining information about the subjective experience to support their everyday living is of the utmost importance. This grounded theory captures valuable knowledge of how the older adults resolved their main concern “you got to keep on” despite their affected vision by “facing the fact” live life as usual since since life goes on. Our study also gives rise both to implications for research and practice in order to strengthen older people with AMD facing their future challenges. Trial registration The Swedish Ethical Review Authority (EPN 2021/02877).
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spelling doaj.art-feee8abf146742e585ab403930f33eb82024-03-05T16:41:51ZengBMCBMC Geriatrics1471-23182024-01-012411910.1186/s12877-024-04689-9Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degenerationJ. Källstrand0E-C. Lindgren1I. M. Carlsson2School of Health and Welfare, Halmstad UniversitySchool of Health and Welfare, Halmstad UniversitySchool of Health and Welfare, Halmstad UniversityAbstract Background Age-Related Macular Degeneration (AMD) is an eye disease associated with age that causes progressive and irreversible loss of central vision, while the peripheral visual ability remains. The occurrence of and especially late AMD is estimated to increase extensively to 2040 among persons aged ≥ 65 in Scandinavia, due to an increasing aging population. Objectives The present study explored what it means to live with AMD through the eyes of those living with the condition. Methods This is an explorative interview study. People who were ≥ 65 years old, living in their own homes, and diagnosed with advanced dry AMD in one or both eyes, causing a visual acuity of no more than 0.3 or worse in the best eye, were invited to participate in the study. The method chosen was the constructivist grounded theory, where reality is seen as fundamentally social and processual and a way of accessing the participants’ experiences, thoughts, and feelings. Results In total, 12 interviews were conducted. Living with dry AMD confronted different problems and challenges. The substantive theory, Perpetuating ability to live life as usual, is characterised by a desire to continue life as usual, which requires an acceptance of the disease’s progress, self-acceptance of the new me, and an acceptance that the new life needs to be lived a little more carefully. Moreover, the participants used three strategies to resolve their main concern by maintaining an everyday life 1) Navigating the new normal, 2) Trusting own ability, and 3) Interdepending. Conclusion Maintaining an everyday life is the primary concern among people with AMD. In supporting self-care, gaining information about the subjective experience to support their everyday living is of the utmost importance. This grounded theory captures valuable knowledge of how the older adults resolved their main concern “you got to keep on” despite their affected vision by “facing the fact” live life as usual since since life goes on. Our study also gives rise both to implications for research and practice in order to strengthen older people with AMD facing their future challenges. Trial registration The Swedish Ethical Review Authority (EPN 2021/02877).https://doi.org/10.1186/s12877-024-04689-9Age-related macular degenerationGrounded theoryOlder adultsVisual impairment
spellingShingle J. Källstrand
E-C. Lindgren
I. M. Carlsson
Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration
BMC Geriatrics
Age-related macular degeneration
Grounded theory
Older adults
Visual impairment
title Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration
title_full Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration
title_fullStr Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration
title_full_unstemmed Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration
title_short Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration
title_sort perpetuating ability to live life as usual a grounded theory study of persons living with age related macular degeneration
topic Age-related macular degeneration
Grounded theory
Older adults
Visual impairment
url https://doi.org/10.1186/s12877-024-04689-9
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