ETD Collection

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Author: search.filters.author.Wessels, Tina-Marie

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    Fragile X Syndrome: A Family Study
    (1997-10-31) Wessels, Tina-Marie
    Fragile X syndrome is, second to Down syndrome, the commonest form of genetic mental retardation. The aim of this research project was to investigate the impact of having a child with this syndrome on the family relationships. The subjects were 21 mothers and 9 fathers of affected children. The data were collected by means of specially constructed questionnaires in interviews with 19 mothers and 8 fathers and completed by post in three cases. A control group of parents with a normal child, matched for sex and age of the affected child, family size and ethnic groups, was interviewed. The data were computerised and analyzed. The results showed that more experimental parents than controls enjoyed their child’s nature, but disliked the behavioural problems. About half of the experimental parents tended not to reward good behaviour physically. However, although most of the affected children were accepted by their siblings, they had fewer friends and more problems with their peers. Some parents thought that their relationship with their spouse had improved and others thought that it had deteriorated after the affected child’s birth. Most parents in both study groups would request prenatal diagnosis in subsequent pregnancies and significantly more experimental parents than controls would request a termination of pregnancy for an affected fetus. Most parents were satisfied with the health service they received. These results show that family dynamics are disturbed by the presence of a child with FMR. Counsellors and therapists working with these families should be aware of the effects of the syndrome on the family
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    The interactional dynamics of the genetic counselling session in a multicultural, antenatal setting
    (2014-03-31) Wessels, Tina-Marie
    The 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.