Mothers’ Experiences of Genetic Counselling in Johannesburg, South Africa
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Genetic counselling is offered in diverse settings, and patient reactions vary due to differences in personal, family and community beliefs, local healthcare settings, as well as cultural background. Together, these factors influence how individuals experience genetic counselling. This study aimed to describe and document the experiences of thirteen mothers, with children with Down syndrome, oculocutaneous albinism or haemophilia B, who had received genetic counselling at state hospitals in Johannesburg, South Africa. A qualitative research design drawing on principles of Interpretative Phenomenological Analysis was used. Four voice-recorded focus groups were conducted and the resulting data were analysed using thematic content analysis. Five themes were identified in the data: thrown into the unknown; a worthwhile experience; a break in communication; telling the family and the community; and spreading the word. It was seen that genetic counselling cannot be viewed as a singular experience, but rather as one which is influenced by mothers’ lived experiences and their interactions with other healthcare services, family and community members. The results from this study showed that genetic services and conditions were poorly understood, that the experience of genetic counselling varied amongst mothers, and on-going patient support is needed particularly when addressing family and community members. Further research is needed to assess what information is valuable to individuals during genetic counselling and how to deliver this information in a contextually appropriate manner. Greater awareness of genetic conditions is also required amongst communities and healthcare professionals. Valuable insight was gained from this study which can be used to improve local training programmes and genetic counselling services in Johannesburg, and in South Africa.
KeywordsGenetic counselling South Africa Experiences Information Family Community
This project was funded by the South African Medical Research Council (MRC). The authors would like to thank Professor Claire Penn and members of the Health Communication Research Unit at the University of the Witwatersrand for encouragement and input regarding research methodology. The willing help of the following research assistants: Ms. Busisiwe Baloyi, Ms. Neo Motaung, Ms. Mandumo Mguli, Ms. Pretty Sithole and Ms. Kholeka Sopotela. Lastly, the authors would like to thank all the mothers who gave of their time to participate in this research study.
Conflict of Interest
Megan Morris, Merlyn Glass, Tina-Marié Wessels, and Jennifer G.R. Kromberg declare that they have no conflict of interest.
Informed consent was obtained from all participants included in the study.
Research Involving Human Participants and/or Animals
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000.
The study was approved on 27/01/2012 by the Human Research Ethics Committee (Medical), University of the Witwatersrand, Johannesburg, South Africa (Ethics Clearance Code: M111160). No animal studies were carried out by the authors for this article.
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