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.
| Identifer | oai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:uct/oai:localhost:11427/28181 |
| Date | January 2017 |
| Creators | Popel, Kalinka |
| Contributors | Greenberg, Jacquie, Leisegang, Cody, Düsterwald, Gillian |
| Publisher | University of Cape Town, Faculty of Health Sciences, Division of Human Genetics |
| Source Sets | South African National ETD Portal |
| Language | English |
| Detected Language | English |
| Type | Master Thesis, Masters, MSc (Med) |
| Format | application/pdf |
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