Original Research

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

Kalinka Popel, Cordelia Leisegang, Gill Dusterwald, Jacquie Greenberg
African Vision and Eye Health | Vol 79, No 1 | a567 | DOI: https://doi.org/10.4102/aveh.v79i1.567 | © 2020 Kalinka Popel, Cordelia Leisegang, Gill Dusterwald, Jacquie Greenberg | This work is licensed under CC Attribution 4.0
Submitted: 22 March 2020 | Published: 19 November 2020

About the author(s)

Kalinka Popel, Department of Pathology, Division of Human Genetics, University of Cape Town, Cape Town, South Africa
Cordelia Leisegang, Department of Medicine, Health Sciences, Division of Clinical Pharmacology, University of Cape Town, Cape Town, South Africa
Gill Dusterwald, Department of Pathology, Division of Human Genetics, University of Cape Town, Cape Town; and, Private Practice, Cape Town, South Africa, South Africa
Jacquie Greenberg, Department of Pathology, Division of Human Genetics, University of Cape Town, Cape Town, South Africa


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Abstract

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.


Keywords

visual impairment; young adults; genetic; qualitative; inherited

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