Tina-Marié Wessels1,2, Tom Koole2,3, Claire Penn3. 1. Division of Human Genetics and the Health Communication Research Unit, University of the Witwatersrand, Johannesburg, South Africa. 2. Health Communication Research Unit, University of the Witwatersrand, Johannesburg, South Africa. 3. Communication and Information Science, Rijksuniversiteit Groningen, Groningen, The Netherlands.
Abstract
BACKGROUND: Decision making is integral to genetic counselling and the premise is that autonomous decisions emerge if patients are provided with information in a non-directive manner. The pivotal activity in antenatal diagnosis counselling with at-risk pregnant women is decision making regarding invasive procedures. This process is not well understood in multicultural settings. OBJECTIVE: This study examined multicultural genetic counselling interactions with women of advanced maternal age (AMA). It aimed to investigate the participants' orientation towards the amniocentesis decision. DESIGN: Data were collected during 14 video-recorded consultations between six genetic counsellors and 14 women of AMA in a genetic counselling clinic in South Africa. The design was qualitative and conversation analysis was used for analysis. RESULTS: Analysis revealed that counsellors used several strategies to facilitate discussions and decision making. However, the invitation to make a decision regarding amniocentesis was not perceived as being neutral. Both the counsellors and the women appeared to treat the offer as one which should be accepted. This resulted in a paradox, as strategies intended to allow neutral discussion seem to achieve the opposite. It is suggested that these results may be linked to the local health-care setting. CONCLUSION: The results suggest that the understanding of decision-making processes and enhancing autonomy may require a more detailed investigation into psychosocial, political and historical factors in the local health-care setting. Models of practice as well as the training of genetic counsellors need to be sensitive to these influences. A closer examination of interactional variables may yield new and relevant insights for the profession.
BACKGROUND: Decision making is integral to genetic counselling and the premise is that autonomous decisions emerge if patients are provided with information in a non-directive manner. The pivotal activity in antenatal diagnosis counselling with at-risk pregnant women is decision making regarding invasive procedures. This process is not well understood in multicultural settings. OBJECTIVE: This study examined multicultural genetic counselling interactions with women of advanced maternal age (AMA). It aimed to investigate the participants' orientation towards the amniocentesis decision. DESIGN: Data were collected during 14 video-recorded consultations between six genetic counsellors and 14 women of AMA in a genetic counselling clinic in South Africa. The design was qualitative and conversation analysis was used for analysis. RESULTS: Analysis revealed that counsellors used several strategies to facilitate discussions and decision making. However, the invitation to make a decision regarding amniocentesis was not perceived as being neutral. Both the counsellors and the women appeared to treat the offer as one which should be accepted. This resulted in a paradox, as strategies intended to allow neutral discussion seem to achieve the opposite. It is suggested that these results may be linked to the local health-care setting. CONCLUSION: The results suggest that the understanding of decision-making processes and enhancing autonomy may require a more detailed investigation into psychosocial, political and historical factors in the local health-care setting. Models of practice as well as the training of genetic counsellors need to be sensitive to these influences. A closer examination of interactional variables may yield new and relevant insights for the profession.
Authors: Robert Resta; Barbara Bowles Biesecker; Robin L Bennett; Sandra Blum; Susan Estabrooks Hahn; Michelle N Strecker; Janet L Williams Journal: J Genet Couns Date: 2006-04 Impact factor: 2.537
Authors: Jo Hilder; Maria Stubbe; Lindsay Macdonald; Peter Abels; Anthony C Dowell Journal: BMC Pregnancy Childbirth Date: 2020-08-27 Impact factor: 3.007