Mothers’ Experiences of Genetic Counselling in Johannesburg, South Africa

Type Journal Article - Journal of genetic counseling
Title Mothers’ Experiences of Genetic Counselling in Johannesburg, South Africa
Volume 24
Issue 1
Publication (Day/Month/Year) 2015
Page numbers 158-168
URL 557955 FINAL SUBMISSION OF RESEARCH REPORT​9 April 2.pdf?sequence=1
Genetic 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.
The aim of this study was to describe and document the experience of mothers who had received
genetic counselling at state hospitals in Johannesburg, South Africa, after having a child diagnosed
with a genetic condition. The research design was qualitative in which thirteen women, who had
received counselling between January 2010 and January 2012, agreed to participate. Four voicerecorded
focus groups were conducted in a suitable African language with the use of a question-guide.
All recorded data were transcribed and translated into English and Interpretative Phenomenological
Analysis (IPA) was used for the analysis and development of themes.
Six main themes, together with relevant sub-themes were identified. These included a general lack of
awareness of genetic counselling and genetic conditions; both positive and negative experiences of
genetic counselling including a need for greater support; personal beliefs regarding genetic conditions;
challenges in addressing family and community members; dissatisfaction with the healthcare system
and a need for awareness campaigns. Although findings from this study cannot be generalised to all
patients or all South African settings, valuable insight has been gained that may contribute towards
improving genetic counselling services in Johannesburg, South Africa.

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