OBJECTIVE: The aim of this study was to investigate how couples regard screening information and how they make subsequent decisions about undergoing prenatal screening for Down syndrome. METHODS: Twenty semi-structured interviews were conducted to explore aspects of the decision-making process. Interviews were digitally recorded and transcribed verbatim, and data were analysed using the framework approach. RESULTS: Couples reported a strong desire for a joint but ultimately private decision-making process and saw the main role of their midwife as an information provider. Considerable confusion existed over which screening tests were available via the National Health Service and which were offered privately. Provision of experiential information regarding both subsequent diagnostic tests and the experience of living with Down syndrome would have been beneficial. CONCLUSION: This study shows that couples would benefit from receiving experiential information when they are deciding about Down syndrome screening. Future research should be conducted to establish what form such information should take, the most helpful means to provide such information, and whether such information would also be useful in other contexts where people need to make decisions whether to undergo screening.
OBJECTIVE: The aim of this study was to investigate how couples regard screening information and how they make subsequent decisions about undergoing prenatal screening for Down syndrome. METHODS: Twenty semi-structured interviews were conducted to explore aspects of the decision-making process. Interviews were digitally recorded and transcribed verbatim, and data were analysed using the framework approach. RESULTS: Couples reported a strong desire for a joint but ultimately private decision-making process and saw the main role of their midwife as an information provider. Considerable confusion existed over which screening tests were available via the National Health Service and which were offered privately. Provision of experiential information regarding both subsequent diagnostic tests and the experience of living with Down syndrome would have been beneficial. CONCLUSION: This study shows that couples would benefit from receiving experiential information when they are deciding about Down syndrome screening. Future research should be conducted to establish what form such information should take, the most helpful means to provide such information, and whether such information would also be useful in other contexts where people need to make decisions whether to undergo screening.
Authors: Rachèl V van Schendel; Adriana Kater-Kuipers; Elsbeth H van Vliet-Lachotzki; Wybo J Dondorp; Martina C Cornel; Lidewij Henneman Journal: J Genet Couns Date: 2016-09-13 Impact factor: 2.537