Women's experiences of receiving a child's fetal alcohol spectrum disorder diagnosis: a Western Cape study

There are a range of conditions, collectively known as fetal alcohol spectrum disorders (FASD), which result from the exposure of a developing fetus to alcohol. South Africa has among the highest rates of FASD reported in the world, especially among the impoverished communities in the Western Cape region, with rates of up to 208.8 per 1000 first grade learners being reported. The need for screening, surveillance and immediate prevention work has been stressed. Limited research has been conducted on understanding the experiences of parents who raise children with FASD. This is invaluable in understanding what needs, support, services, education and funding is required. The Foundation for Alcohol Related Research (FARR) recently conducted a FASD epidemiological study to assess the burden of FASD and guide the implementation of prevention work in high risk areas. Grade one learners from 14 West Coast schools were diagnosed, and their mothers received a diagnostic feedback and counselling session. The aim of the rese arch project was to explore the experiences of women who have received an FASD diagnosis for their child and to understand their comprehension, feelings and needs. Thirteen participants were recruited through FARR and semi-structured interviews were conducted at Vredenburg Private Hospital in the West Coast region of South Africa. Additionally, three community workers were interviewed. The data was analysed using a thematic content analysis approach and five themes were identified. The research identified that the social context in which these women live has caused them to fall victim to their circumstances, contributing to their drinking habits. Their experiences of living with an FASD child are difficult and most women feel guilty while others are in denial. Although these women know that alcohol was the cause of their child's problems, there were a number of misconceptions such as the amount of alcohol to cause harm, which parent was responsible and that drugs are safer than alcohol use during pregnancy. Furthermore, the mothers found it helpful to know the diagnosis. This helped them understand their child's problems. They felt strongly that they will abstain from alcohol use during pregnancy and that they will encourage other women to do the same. There was a need for further education and context-sensitive intervention work. This research will impact strategies to support families, help to improve services and guide prevention work in this area.

Grantor dc:publisher.institution

Division of Human Genetics

Year dc:date.issued

2015

Author dc:creator

• Shaw, Tarryn

Advisors dc:contributor.advisor

• Wessels, Tina
• Olivier, Leana
• Lombard, Chanelle

Language dc:language.iso

eng

Handle dc:identifier.uri

http://hdl.handle.net/11427/16922

OAI identifier oai:identifier

oai:open.uct.ac.za:11427/16922