The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment

African Vision and Eye Health

 
 
Field Value
 
Title The world through their eyes: The perceptions and lived experience among Capetonian young adults with hereditary visual impairment
 
Creator Popel, Kalinka Leisegang, Cordelia Dusterwald, Gill Greenberg, Jacquie
 
Subject Health Sciences; Human Genetics visual impairment; young adults; genetic; qualitative; inherited
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.
 
Publisher AOSIS
 
Contributor National Research Foundation RetinaSA Athlone School for the Blind The League of Friends of the Blind
Date 2020-11-19
 
Type info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion — Qualitative research
Format text/html application/epub+zip text/xml application/pdf
Identifier 10.4102/aveh.v79i1.567
 
Source African Vision and Eye Health; Vol 79, No 1 (2020); 7 pages 2410-1516 2413-3183
 
Language eng
 
Relation
The following web links (URLs) may trigger a file download or direct you to an alternative webpage to gain access to a publication file format of the published article:

https://avehjournal.org/index.php/aveh/article/view/567/1357 https://avehjournal.org/index.php/aveh/article/view/567/1356 https://avehjournal.org/index.php/aveh/article/view/567/1358 https://avehjournal.org/index.php/aveh/article/view/567/1355
 
Coverage South Africa; Cape Town — 18-23 years; male and female; genetic visual impairement
Rights Copyright (c) 2020 Kalinka Popel, Cordelia Leisegang, Gill Dusterwald, Jacquie Greenberg https://creativecommons.org/licenses/by/4.0
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