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Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study
In South Africa, approximately 600 000 individuals are visually impaired. Approximately onethird of genetic disorders and syndromes involves the eye, including conditions such as congenital cataracts, glaucoma, albinism, and retinal degenerative disorders. The transition into adulthood of visually d...
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| Format: | Thesis |
| Language: | English |
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Division of Human Genetics
2018
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| _version_ | 1867613291893751808 |
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| access_status_str | Open Access |
| author | Popel, Kalinka |
| author2 | Greenberg, Jacquie |
| author_browse | Greenberg, Jacquie Popel, Kalinka |
| author_facet | Greenberg, Jacquie Popel, Kalinka |
| author_sort | Popel, Kalinka |
| collection | Thesis |
| description | In South Africa, approximately 600 000 individuals are visually impaired. Approximately onethird of genetic disorders and syndromes involves the eye, including conditions such as congenital cataracts, glaucoma, albinism, and retinal degenerative disorders. The transition into adulthood of visually disabled individuals is a crucial time, as it lays the foundation for their future. The aim of this research was to explore the level of understanding, perceptions and lived experiences of young adults aged eighteen to twenty-three who are visually impaired due to a genetic cause. A qualitative design, utilizing a phenomenological approach was used for this study. Fifteen participants were recruited through Athlone School for the Blind, the League of Friends of the Blind and Retina SA. In-depth interviews were conducted and data obtained was analysed using thematic analysis. Five themes were identified through this approach indicating the implications of having a genetic visual condition as perceived and experienced by these young adults. Most of the young adults experienced difficulty in understanding their condition and the genetic bases thereof and they had a strong desire to obtain clarity and knowledge via genetic counselling. The community was thought not to understand their situation either. They were unsure of the inheritance risks to future offspring and some indicated that they felt that this was a gamble they were unwilling to take, whilst others would have children. In some instances, their own visual impairment might create obstacles to raising children. Social interactions were greatly impacted and they felt isolated and tried to avoid unpleasant treatment, stigmatization and pity from the community. Intimate relationships were also noted as a challenge. Mobility is a major obstacle due to the incapacity to drive, as well as the lack of disability user-friendly public transportation and a daunting environment. They want to and feel that they can be independent and achieve the same things as sighted individuals, but society and life circumstances often create barriers to this. This research could assist in providing information to create more efficient, patient-centred genetic services and might be informative to various organizations about targeted support to provide these individuals and methods to assist their transition to adulthood. |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/28181 |
| institution | University of Cape Town (South Africa) |
| language | eng |
| last_indexed | 2026-06-10T12:33:48.261Z |
| license_str | Not specified — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from UCTD — University of Cape Town Open Access Repository |
| publishDate | 2018 |
| publishDateRange | 2018 |
| publishDateSort | 2018 |
| publisher | Division of Human Genetics |
| publisherStr | Division of Human Genetics |
| record_format | dspace |
| source_str | UCTD — University of Cape Town Open Access Repository |
| spelling | oai:open.uct.ac.za:11427/28181 Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study Popel, Kalinka Greenberg, Jacquie Leisegang, Cody Düsterwald, Gillian Genetic Counselling Visual Impairment In South Africa, approximately 600 000 individuals are visually impaired. Approximately onethird of genetic disorders and syndromes involves the eye, including conditions such as congenital cataracts, glaucoma, albinism, and retinal degenerative disorders. The transition into adulthood of visually disabled individuals is a crucial time, as it lays the foundation for their future. The aim of this research was to explore the level of understanding, perceptions and lived experiences of young adults aged eighteen to twenty-three who are visually impaired due to a genetic cause. A qualitative design, utilizing a phenomenological approach was used for this study. Fifteen participants were recruited through Athlone School for the Blind, the League of Friends of the Blind and Retina SA. In-depth interviews were conducted and data obtained was analysed using thematic analysis. Five themes were identified through this approach indicating the implications of having a genetic visual condition as perceived and experienced by these young adults. Most of the young adults experienced difficulty in understanding their condition and the genetic bases thereof and they had a strong desire to obtain clarity and knowledge via genetic counselling. The community was thought not to understand their situation either. They were unsure of the inheritance risks to future offspring and some indicated that they felt that this was a gamble they were unwilling to take, whilst others would have children. In some instances, their own visual impairment might create obstacles to raising children. Social interactions were greatly impacted and they felt isolated and tried to avoid unpleasant treatment, stigmatization and pity from the community. Intimate relationships were also noted as a challenge. Mobility is a major obstacle due to the incapacity to drive, as well as the lack of disability user-friendly public transportation and a daunting environment. They want to and feel that they can be independent and achieve the same things as sighted individuals, but society and life circumstances often create barriers to this. This research could assist in providing information to create more efficient, patient-centred genetic services and might be informative to various organizations about targeted support to provide these individuals and methods to assist their transition to adulthood. 2018-05-29T10:33:41Z 2018-05-29T10:33:41Z 2017 Master Thesis Masters MSc (Med) http://hdl.handle.net/11427/28181 eng application/pdf Division of Human Genetics Faculty of Health Sciences University of Cape Town |
| spellingShingle | Genetic Counselling Visual Impairment Popel, Kalinka Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study |
| thesis_degree_str | Master's |
| title | Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study |
| title_full | Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study |
| title_fullStr | Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study |
| title_full_unstemmed | Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study |
| title_short | Young adults' perceptions of the implications of their hereditary, visual impairment: A Cape Town based study |
| title_sort | young adults perceptions of the implications of their hereditary visual impairment a cape town based study |
| topic | Genetic Counselling Visual Impairment |
| url | http://hdl.handle.net/11427/28181 |
| work_keys_str_mv | AT popelkalinka youngadultsperceptionsoftheimplicationsoftheirhereditaryvisualimpairmentacapetownbasedstudy |