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Investigating the opinions on telephonic advanced maternal age genetic counselling
Background: The research on telephonic genetic counselling (GC) services has increased since 2020. However, there is still limited research on the experience and opinions of this service from the patients' perspective. This is particularly true in low to middle-income settings such as South Africa....
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| Format: | Thesis |
| Language: | English |
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Department of Pathology
2024
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| _version_ | 1867613249109753856 |
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| access_status_str | Open Access |
| author | Bayley, Samantha |
| author2 | Laing, Nakita |
| author_browse | Bayley, Samantha Laing, Nakita |
| author_facet | Laing, Nakita Bayley, Samantha |
| author_sort | Bayley, Samantha |
| collection | Thesis |
| description | Background: The research on telephonic genetic counselling (GC) services has increased since 2020. However, there is still limited research on the experience and opinions of this service from the patients' perspective. This is particularly true in low to middle-income settings such as South Africa. The advanced maternal age (AMA) telephonic GC service at Groote Schuur Hospital (GSH), has been implemented since COVID-19 regulations were enforced in 2020. This study aims to investigate the opinions and experiences of the patients on this telephonic service. Methods: This qualitative study used individual semi-structured interviews, both in-person and telephonic, and followed a phenomenological approach. The data were analysed using thematic data analysis. Results: The participants (n=9) had varying opinions about the telephonic GC service offered through GSH. The information gathering process varied for the participants; especially the differing Midwife Obstetric Units (MOUs) referrals and the information given. Some participants found online resources helpful, but not all participants felt the same. Overall, the participants felt the information given by the GC service was informative and useful. An important outcome of the research was a general trust between the GC trainee and participants but a distrust between other health care professionals and the participants. Numerous factors influenced decision-making concerning invasive testing including participants' fears and seeking control or having a sense of control based on if you would cope with having a child with DS. Conclusion: The distrust in the healthcare system can have a significant impact on patients' understanding and decision-making in a GC session. Overall, there are benefits and barriers to be aware of, but most participants found the GC session informative and allowed them to make informed decisions. This research included a limited sample size, which prevents the generalizability of these findings. |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/40790 |
| institution | University of Cape Town (South Africa) |
| language | eng |
| last_indexed | 2026-06-10T12:33:08.525Z |
| license_str | Not specified — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from UCTD — University of Cape Town Open Access Repository |
| publishDate | 2024 |
| publishDateRange | 2024 |
| publishDateSort | 2024 |
| publisher | Department of Pathology |
| publisherStr | Department of Pathology |
| record_format | dspace |
| source_str | UCTD — University of Cape Town Open Access Repository |
| spelling | oai:open.uct.ac.za:11427/40790 Investigating the opinions on telephonic advanced maternal age genetic counselling Bayley, Samantha Laing, Nakita Malope, Malebo Wessels, Tina-Marié pathology Background: The research on telephonic genetic counselling (GC) services has increased since 2020. However, there is still limited research on the experience and opinions of this service from the patients' perspective. This is particularly true in low to middle-income settings such as South Africa. The advanced maternal age (AMA) telephonic GC service at Groote Schuur Hospital (GSH), has been implemented since COVID-19 regulations were enforced in 2020. This study aims to investigate the opinions and experiences of the patients on this telephonic service. Methods: This qualitative study used individual semi-structured interviews, both in-person and telephonic, and followed a phenomenological approach. The data were analysed using thematic data analysis. Results: The participants (n=9) had varying opinions about the telephonic GC service offered through GSH. The information gathering process varied for the participants; especially the differing Midwife Obstetric Units (MOUs) referrals and the information given. Some participants found online resources helpful, but not all participants felt the same. Overall, the participants felt the information given by the GC service was informative and useful. An important outcome of the research was a general trust between the GC trainee and participants but a distrust between other health care professionals and the participants. Numerous factors influenced decision-making concerning invasive testing including participants' fears and seeking control or having a sense of control based on if you would cope with having a child with DS. Conclusion: The distrust in the healthcare system can have a significant impact on patients' understanding and decision-making in a GC session. Overall, there are benefits and barriers to be aware of, but most participants found the GC session informative and allowed them to make informed decisions. This research included a limited sample size, which prevents the generalizability of these findings. 2024-12-20T06:55:56Z 2024-12-20T06:55:56Z 2024 2024-12-20T06:53:09Z Thesis / Dissertation Masters MMedSc http://hdl.handle.net/11427/40790 eng application/pdf Department of Pathology Faculty of Health Sciences University of Cape Town |
| spellingShingle | pathology Bayley, Samantha Investigating the opinions on telephonic advanced maternal age genetic counselling |
| thesis_degree_str | Master's |
| title | Investigating the opinions on telephonic advanced maternal age genetic counselling |
| title_full | Investigating the opinions on telephonic advanced maternal age genetic counselling |
| title_fullStr | Investigating the opinions on telephonic advanced maternal age genetic counselling |
| title_full_unstemmed | Investigating the opinions on telephonic advanced maternal age genetic counselling |
| title_short | Investigating the opinions on telephonic advanced maternal age genetic counselling |
| title_sort | investigating the opinions on telephonic advanced maternal age genetic counselling |
| topic | pathology |
| url | http://hdl.handle.net/11427/40790 |
| work_keys_str_mv | AT bayleysamantha investigatingtheopinionsontelephonicadvancedmaternalagegeneticcounselling |