Jan Hodgson1,2, Penelope Pitt1, Sylvia Metcalfe1,2, Jane Halliday1,2, Melody Menezes1,3, Jane Fisher4, Chriselle Hickerton1, Kerry Petersen5, Belinda McClaren1,2. 1. Murdoch Childrens Research Institute, Melbourne, Victoria, Australia. 2. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia. 3. Monash Ultrasound for Women, Melbourne, Victoria, Australia. 4. Jean Hailes Research Unit, Monash University, Melbourne, Victoria, Australia. 5. School of Law, LaTrobe University, Melbourne, Victoria, Australia.
Abstract
BACKGROUND: Advances in genetic technologies and ultrasound screening techniques have increased the ability to predict and diagnose congenital anomalies during pregnancy. As a result more prospective parents than ever before will receive a prenatal diagnosis of a fetal abnormality. Little is known about how Australian women and men experience receiving a prenatal diagnosis and how they make their decision about whether or not to continue the pregnancy. AIMS: This qualitative study aims to describe parental experiences and examine how best to provide support after a prenatal diagnosis. RESULTS: Individual in-depth interviews were conducted with 102 women and men approximately six weeks post-diagnosis of fetal abnormality. Data were elicited using a narrative, chronological approach and women (n = 75) and a sample of male partners (n = 27) were separately interviewed. Thematic analysis, involving a rigorous process of qualitative coding, enabled iterative development and validation of emergent themes. Participants identified that the shock of the diagnosis can be lessened when good care is delivered, by provision of: clear, accurate and respectful communication; empathic, non-judgemental, professional support; timely access to further testing and appointments; seamless interactions with services and administration; appropriate choices about invasive testing; acknowledgment of the enormity and unexpected nature of the diagnosis, and of the subsequent decision-making challenges; and discussion of the myriad feelings likely to emerge throughout the process. CONCLUSIONS: This study has demonstrated the importance of providing timely access to accurate information and supportive, non-judgemental care for women and their partners following prenatal diagnosis of a fetal abnormality.
BACKGROUND: Advances in genetic technologies and ultrasound screening techniques have increased the ability to predict and diagnose congenital anomalies during pregnancy. As a result more prospective parents than ever before will receive a prenatal diagnosis of a fetal abnormality. Little is known about how Australian women and men experience receiving a prenatal diagnosis and how they make their decision about whether or not to continue the pregnancy. AIMS: This qualitative study aims to describe parental experiences and examine how best to provide support after a prenatal diagnosis. RESULTS: Individual in-depth interviews were conducted with 102 women and men approximately six weeks post-diagnosis of fetal abnormality. Data were elicited using a narrative, chronological approach and women (n = 75) and a sample of male partners (n = 27) were separately interviewed. Thematic analysis, involving a rigorous process of qualitative coding, enabled iterative development and validation of emergent themes. Participants identified that the shock of the diagnosis can be lessened when good care is delivered, by provision of: clear, accurate and respectful communication; empathic, non-judgemental, professional support; timely access to further testing and appointments; seamless interactions with services and administration; appropriate choices about invasive testing; acknowledgment of the enormity and unexpected nature of the diagnosis, and of the subsequent decision-making challenges; and discussion of the myriad feelings likely to emerge throughout the process. CONCLUSIONS: This study has demonstrated the importance of providing timely access to accurate information and supportive, non-judgemental care for women and their partners following prenatal diagnosis of a fetal abnormality.
Authors: José Atienza-Carrasco; Manuel Linares-Abad; María Padilla-Ruiz; Isabel María Morales-Gil Journal: Reprod Health Date: 2018-01-23 Impact factor: 3.223
Authors: Frederike H W Dekkers; Attie T J I Go; Luuk Stapersma; Alex J Eggink; Elisabeth M W J Utens Journal: Prenat Diagn Date: 2019-05-21 Impact factor: 3.050