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Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town
Includes bibliographical references
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| Main Author: | |
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| Other Authors: | |
| Format: | Thesis |
| Language: | English |
| Published: |
Division of Human Genetics
2016
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| _version_ | 1867613291717591040 |
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| access_status_str | Open Access |
| author | Van Niekerk, Katryn |
| author2 | Wonkam, Ambroise |
| author_browse | Van Niekerk, Katryn Wonkam, Ambroise |
| author_facet | Wonkam, Ambroise Van Niekerk, Katryn |
| author_sort | Van Niekerk, Katryn |
| collection | Thesis |
| description | Includes bibliographical references |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/16652 |
| 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 | 2016 |
| publishDateRange | 2016 |
| publishDateSort | 2016 |
| 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:11427/16652 Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town Van Niekerk, Katryn Wonkam, Ambroise de Vries, Jantina Genetic Counseling Includes bibliographical references Sickle Cell Disease (SCD) is an autosomal recessively inherited blood disorder that leads to a debilitating systemic illness. Although the disease was initially found predominantly in tropical and subtropical regions, SCD has now become a global health problem, due to migration of people from various countries with a high burden thereof. Consequently, the incidence of SCD in South Africa has increased dramatically over the last decade. This study, which constitutes a minor dissertation in fulfilment of an MSc (Med) Genetic Counselling degree, aimed to explore the knowledge and understanding of SCD among parents of affected children in Cape Town as well as identify burdens associated with caring for a child with SCD. Furthermore, the study assessed opportunities to improve genetic counselling services available to parents and explored their attitude to preventive policies. A phenomenological approach was used to conduct this research. Seventeen semi-structured interviews were conducted with the biological parent of a child attending the Red Cross War Memorial Children's Hospital Haematology Clinic. Participants were selected using both purposive and convenience sampling methods. Data collected during these interviews were analysed using thematic content analysis. Themes and relevant sub-themes were identified and grouped into three categories: knowledge and understanding; experiences and burdens; and attitude toward preventative policies. While the majority of participants had some knowledge of SCD, several misconceptions were discovered, often relating to participants' prior knowledge of the disease. A number of burdens experienced by participants were revealed, with both practical and psychosocial implications. Finally, it was found that the majority of participants supported all methods of screening for SCD, regardless of whether they would make use of the screening services themselves. Findings of this study provide valuable insights on the subject of experiences of parents of children affected with SCD as well as the potential role of genetic counselling services. This study contributes towards improving understanding and subsequent services provided to individuals raising a child affected with Sickle Cell Disease. 2016-02-01T10:13:33Z 2016-02-01T10:13:33Z 2015 Master Thesis Masters MSc (Med) http://hdl.handle.net/11427/16652 eng application/pdf Division of Human Genetics Faculty of Health Sciences University of Cape Town |
| spellingShingle | Genetic Counseling Van Niekerk, Katryn Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town |
| thesis_degree_str | Master's |
| title | Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town |
| title_full | Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town |
| title_fullStr | Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town |
| title_full_unstemmed | Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town |
| title_short | Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town |
| title_sort | knowledge and experiences of parents with children affected by sickle cell disease in cape town |
| topic | Genetic Counseling |
| url | http://hdl.handle.net/11427/16652 |
| work_keys_str_mv | AT vanniekerkkatryn knowledgeandexperiencesofparentswithchildrenaffectedbysicklecelldiseaseincapetown |