3. Electronic Theses and Dissertations (ETDs) - All submissions
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Item The interactional dynamics of the genetic counselling session in a multicultural, antenatal setting(2014-03-31) Wessels, Tina-MarieThe present study explored the interactional dynamics of intercultural Genetic Counselling sessions in clinics in Johannesburg. Genetic Counselling is a relatively young profession and although extensive research is available on the process there is a paucity of literature on what occurs in the interactions and even less is available on intercultural encounters. The selected methodology for the study was discourse analysis which concentrates on analysing what the discussions do rather than what they are about. The data comprised of 17 video recorded prenatal genetic counselling sessions with women who were at an increased risk of having a baby with a chromosome abnormality due to advanced maternal age. The sessions were conducted in English by six genetic counsellors. The video recordings were transcribed and the transcripts and recordings were analysed based on Principles of Discourse Analysis. It was apparent during the initial phases of the analysis that there was a distinct order to the interactions with six specific phases being identified. Certain phases appeared significant, and as a result openings, decision-making and counselling phases were analysed further. Counsellor dominance in the interactions manifested in the number of strategies they had developed to guide the women through the counselling session. In their active participation, the counsellors identified the agenda and they controlled it throughout the interaction. During decision making, they used active strategies to assist the women to make a decision regarding having an amniocentesis performed. Even in the counselling segments where the counsellors and the women discussed issues related the women’s life, the initiation and development were controlled by the counsellors. In contrast to the counsellors’ dominance of interactional space, the women shared issues relating to their life world during the counselling segments. This apparent contrast seemed to create tension in the counsellors’ role as they had to either ‘educate’ or ‘counsel’. Tension was further created by the counsellors’ perceived obligations to practise in a particular way. Adhering to firmly embedded principles of the profession seemed to limit the counsellors’ practices and simultaneously prevented the achievement of these principles. The emerging tensions is thought to be related to the health care setting in which patients, as a result of social and political reason, have not been active participants in their healthcare decisions. The interactions were shaped by the health care system as it influenced the setting of the agenda, the order in the interactions and the counselling techniques used. The emerging phenomena could not be labelled as cultural and it was rather found that culture was inherent to the individuals and the setting in these interactions. The findings have implications for genetic counselling practice in South Africa as existing models of training and practice necessitate adapting to incorporate the insights gained. The contextual influences require consideration and the patients need to be made the focus of the sessions. A culturally sensitive model of genetic counselling as proposed in the study is thought to advance the profession towards true patient-centered Genetic Counselling practices.Item Mothers experiences of genetic counselling in Johannesburg, South Africa(2014-02-19) Morris, MeganGenetic counselling is an expanding profession, with many services now being offered in multicultural settings. The way in which individuals respond to genetic disorders varies greatly between countries, socio-economic groups, families, communities, religions and cultural groups. Together, these perspectives may influence how people experience genetic counselling with regard to satisfaction of the service, understanding heritability, communication, support and general healthcare provision. To address these issues standardised healthcare and genetic counselling models may need to be adjusted to prevent disparities in healthcare communication for different communities across the globe. South Africa provides a unique setting for genetic counselling because of the rich multicultural and linguistic diversity, as well as the many health and socioeconomic challenges that the country faces. Due to these diversities and challenges, further exploration into individuals‟ experiences of genetic counselling in South Africa is required to gain insight into the service needs for individuals.Item Family history and risk assessment in black South African women with breast cancer(2012-01-17) Wainstein, TashaBlack South African women who have breast cancer have been found in general to be diagnosed at a younger age, have a more aggressive disease and a poorer prognosis in comparison to their Caucasian counterparts. However, there is a paucity of research related to the manner in which breast cancer is inherited in black South African families. It is also not known whether these individuals harbour deleterious mutations in breast cancer predisposition genes. As 5-10% of breast cancers have been shown to be inherited, in white populations, this study aimed to investigate family history and inheritance of breast cancer in black South African women. It also aimed to evaluate the use and consistency of existing risk assessment models in this population. A retrospective, file-based analysis of 45 black South African women who were diagnosed with breast cancer before the age of 50 years was performed. The probands were ascertained from the Genetic Counselling Clinic held weekly at the Breast and Plastic Clinic, Chris Hani Baragwanath Hospital. Information was obtained from the subjects’ genetic counselling files as well as the Oncology database that is housed at the Clinic. Information pertaining to the personal breast disease history of the probands as well as their family histories (three generation pedigrees) was entered into a spreadsheet and analysed. The results of this study indicated that there were very few young black South African women with breast cancer who had a significant family history of cancer (4/45; 9%). Family history is an important factor in assessing an individual’s breast cancer risks. Results also suggested that age at diagnosis may not be an appropriate predictor of inherited breast cancer risk in this population. A significant proportion of black South African women diagnosed with breast cancer younger than 50 years might be proven to have sporadic rather than inherited breast cancers. Three risk assessment tools (The Claus Model, the Tyrer-Cuzick Model and the Manchester Scoring system) were evaluated in this study. They were shown to have some degree of consistency and each had unique advantages and disadvantages of use within this population. The main limitation of these risk assessment tools is that they were designed based on data from Caucasian populations and as such their applicability to a non-Caucasian population has not been validated. Their true validity within this population can only be established once molecular genetic analysis has been performed. This study highlights the necessity of molecular genetic screening in this population in order to further delineate which individuals in this population are truly at an increased risk of developing inherited breast cancer. This information is important because it can inform which individuals would benefit from cancer risk assessments and various cancer prevention and reduction strategies. Information obtained from this study will be useful to direct future research in this population with respect to genetic counselling for inherited breast cancer.