The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment
Background: More than one-third of genetic conditions involve the eye. Young adults with visual impairments experience psychosocial implications throughout their lives. The transition from adolescence to adulthood is a critical period during which young adults with hereditary visual impairment make...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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AOSIS
2020-11-01
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| Series: | African Vision and Eye Health |
| Subjects: | |
| Online Access: | https://avehjournal.org/index.php/aveh/article/view/567 |
| _version_ | 1831559579135115264 |
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| author | Kalinka Popel Cordelia Leisegang Gill Dusterwald Jacquie Greenberg |
| author_facet | Kalinka Popel Cordelia Leisegang Gill Dusterwald Jacquie Greenberg |
| author_sort | Kalinka Popel |
| collection | DOAJ |
| description | Background: More than one-third of genetic conditions involve the eye. Young adults with visual impairments experience psychosocial implications throughout their lives. The transition from adolescence to adulthood is a critical period during which young adults with hereditary visual impairment make choices regarding relationships, procreation and independence, setting the foundation for their future.
Aim: This study explored the perceptions and lived experiences of visually impaired young adults.
Setting: The study was conducted at three institutions for the blind in Cape Town.
Methods: Using purposive sampling, in-depth qualitative interviews were conducted using a phenomenological approach with 15 young adults aged 18–23 years with genetic-based visual conditions. The data were analysed using thematic analysis.
Results: Eleven participants had minimal knowledge and understanding of their condition, which also created uncertainty about their future health. Making decisions about procreation was the main implication of having a genetic-based visual impairment. Mixed feelings were reported regarding bearing offspring. Social alienation was experienced in some instances; many participants felt misunderstood by society, and intimate relationships were thought to be harder to obtain. Challenges with mobility, such as the inability to drive and the need to use public transportation, significantly impacted them, and various psychosocial aspects influenced how they perceived their lives and future.
Conclusion: This research indicates that improved patient-centred healthcare services and support systems would be beneficial in aiding visually impaired individuals successfully transition into adulthood. The findings of this study serve as a useful guide for those who need to provide healthcare services, genetic services and support for visually impaired young adults. |
| first_indexed | 2024-12-17T05:31:26Z |
| format | Article |
| id | doaj.art-854ba7d0d35f4b48b3ad181aa226b967 |
| institution | Directory Open Access Journal |
| issn | 2413-3183 2410-1516 |
| language | English |
| last_indexed | 2024-12-17T05:31:26Z |
| publishDate | 2020-11-01 |
| publisher | AOSIS |
| record_format | Article |
| series | African Vision and Eye Health |
| spelling | doaj.art-854ba7d0d35f4b48b3ad181aa226b9672022-12-21T22:01:43ZengAOSISAfrican Vision and Eye Health2413-31832410-15162020-11-01791e1e710.4102/aveh.v79i1.567442The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairmentKalinka Popel0Cordelia Leisegang1Gill Dusterwald2Jacquie Greenberg3Department of Pathology, Division of Human Genetics, University of Cape Town, Cape TownDepartment of Medicine, Health Sciences, Division of Clinical Pharmacology, University of Cape Town, Cape TownDepartment of Pathology, Division of Human Genetics, University of Cape Town, Cape Town; and, Private Practice, Cape Town, South AfricaDepartment of Pathology, Division of Human Genetics, University of Cape Town, Cape TownBackground: More than one-third of genetic conditions involve the eye. Young adults with visual impairments experience psychosocial implications throughout their lives. The transition from adolescence to adulthood is a critical period during which young adults with hereditary visual impairment make choices regarding relationships, procreation and independence, setting the foundation for their future. Aim: This study explored the perceptions and lived experiences of visually impaired young adults. Setting: The study was conducted at three institutions for the blind in Cape Town. Methods: Using purposive sampling, in-depth qualitative interviews were conducted using a phenomenological approach with 15 young adults aged 18–23 years with genetic-based visual conditions. The data were analysed using thematic analysis. Results: Eleven participants had minimal knowledge and understanding of their condition, which also created uncertainty about their future health. Making decisions about procreation was the main implication of having a genetic-based visual impairment. Mixed feelings were reported regarding bearing offspring. Social alienation was experienced in some instances; many participants felt misunderstood by society, and intimate relationships were thought to be harder to obtain. Challenges with mobility, such as the inability to drive and the need to use public transportation, significantly impacted them, and various psychosocial aspects influenced how they perceived their lives and future. Conclusion: This research indicates that improved patient-centred healthcare services and support systems would be beneficial in aiding visually impaired individuals successfully transition into adulthood. The findings of this study serve as a useful guide for those who need to provide healthcare services, genetic services and support for visually impaired young adults.https://avehjournal.org/index.php/aveh/article/view/567visual impairmentyoung adultsgeneticqualitativeinherited |
| spellingShingle | Kalinka Popel Cordelia Leisegang Gill Dusterwald Jacquie Greenberg The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment African Vision and Eye Health visual impairment young adults genetic qualitative inherited |
| title | The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment |
| title_full | The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment |
| title_fullStr | The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment |
| title_full_unstemmed | The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment |
| title_short | The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment |
| title_sort | world through their eyes the perceptions and lived experience among capetonian young adults with hereditary visual impairment |
| topic | visual impairment young adults genetic qualitative inherited |
| url | https://avehjournal.org/index.php/aveh/article/view/567 |
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