Prenatal diagnosis and termination of pregnancy: perspectives of South African parents of children with Down syndrome
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ORIGINAL ARTICLE
Prenatal diagnosis and termination of pregnancy: perspectives of South African parents of children with Down syndrome Chantelle Jennifer Scott & Merle Futter & Ambroise Wonkam
Received: 12 January 2012 / Accepted: 3 October 2012 / Published online: 25 October 2012 # Springer-Verlag Berlin Heidelberg 2012
Abstract This study aims to evaluate the attitudes of a group of South African parents with a preschool child with Down syndrome (DS) towards prenatal diagnosis (PND) and termination of a Down syndrome-affected pregnancy (TAP). This study employs a qualitative phenomenological approach with the use of semi-structured interviews. Twelve participants were recruited from two state sector hospitals in Cape Town, South Africa. Thematic analysis was used to interpret the data. The participants had a positive attitude towards PND and felt that it was every parent's right to have the option. They considered a benefit of PND the fact that it allowed parents time to prepare for the arrival of a baby with DS. The induced miscarriage risk associated with invasive prenatal testing procedures caused major negative feelings. They were totally opposed to the termination of a Down syndrome-affected pregnancy due to their personal experience, moral, ethical or religious convictions. South African parents of preschool children with Down syndrome are comfortable with PND for Down syndrome; however, they do not support TAP. These findings will provide health care providers with further insight into the motivations behind the decisions their patients make. Keywords Down syndrome . Prenatal genetic diagnosis . Termination of pregnancy . Parent attitudes . Qualitative research . Africa
C. J. Scott : M. Futter : A. Wonkam (*) Division of Human Genetics, Department of Clinical Laboratory Sciences, Faculty of Health Sciences, University of Cape Town, Anzio Road-7925, Observatory, Cape Town, South Africa e-mail: [email protected]
Introduction South Africa (SA) is a country of 50 million inhabitants, rich in ethnic, cultural and religious diversity. The population comprises the following ethnic groups: black African (76.7 %), Caucasian (10.9 %), mixed ancestry (8.9 %) and Indian and Asian (3.5 %). Christian faith (75.5 %) is practiced by the majority of the population and the Muslim belief represents 1.4 %, practiced mostly by the mixed ancestry population. Specifically, in the Western Cape Province, the majority of the population is of mixed ancestry (59.6 %) and Caucasian (18.5 %) (Statistics South Africa 2004). A small portion of the population has completed education at the secondary level and above (20.4 %), while the great majority has a lower education level (Statistics South Africa 2004). The unemployment rate in SA is high and is currently estimated at 24.9 % (Index Mundi 2011). A large number of individuals cannot afford medical insurance and make use of the free-of-charge state sector medical services; nonetheless, the utilization of these services is impeded by transport costs, bureaucracy and complex ma
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