Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town

Simple item page
dc.contributor.advisorWonkam, Ambroiseen_ZA
dc.contributor.advisorde Vries, Jantinaen_ZA
dc.contributor.authorVan Niekerk, Katrynen_ZA
dc.date.accessioned2016-02-01T10:13:33Z
dc.date.available2016-02-01T10:13:33Z
dc.date.issued2015en_ZA
dc.descriptionIncludes bibliographical referencesen_ZA
dc.description.abstractSickle 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.en_ZA
dc.identifier.apacitationVan Niekerk, K. (2015). <i>Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town</i>. (Thesis). University of Cape Town ,Faculty of Health Sciences ,Division of Human Genetics. Retrieved from http://hdl.handle.net/11427/16652en_ZA
dc.identifier.chicagocitationVan Niekerk, Katryn. <i>"Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town."</i> Thesis., University of Cape Town ,Faculty of Health Sciences ,Division of Human Genetics, 2015. http://hdl.handle.net/11427/16652en_ZA
dc.identifier.citationVan Niekerk, K. 2015. Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town. University of Cape Town.en_ZA
dc.identifier.ris TY - Thesis / Dissertation AU - Van Niekerk, Katryn AB - 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. DA - 2015 DB - OpenUCT DP - University of Cape Town LK - https://open.uct.ac.za PB - University of Cape Town PY - 2015 T1 - Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town TI - Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town UR - http://hdl.handle.net/11427/16652 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/16652
dc.identifier.vancouvercitationVan Niekerk K. Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town. [Thesis]. University of Cape Town ,Faculty of Health Sciences ,Division of Human Genetics, 2015 [cited yyyy month dd]. Available from: http://hdl.handle.net/11427/16652en_ZA
dc.language.isoengen_ZA
dc.publisher.departmentDivision of Human Geneticsen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.subject.otherGenetic Counselingen_ZA
dc.titleKnowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Townen_ZA
dc.typeMaster Thesis
dc.type.qualificationlevelMasters
dc.type.qualificationnameMSc (Med)en_ZA
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceThesisen_ZA
Files
Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
thesis_hsf_2015_van_niekerk_katryn.pdf
Size:
1.63 MB
Format:
Adobe Portable Document Format
Description:
Download
Collections
Masters