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Prenatal β ‐thalassemia carrier screening in Australia: healthcare professionals' perspectives of clinical practice
Author(s) -
Cousens Nicole E.,
Gaff Clara L.,
Delatycki Martin B.,
Metcalfe Sylvia A.
Publication year - 2014
Publication title -
prenatal diagnosis
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.956
H-Index - 97
eISSN - 1097-0223
pISSN - 0197-3851
DOI - 10.1002/pd.4297
Subject(s) - informed consent , family medicine , health professionals , medicine , thalassemia , health care , preference , qualitative research , test (biology) , carrier testing , nursing , action (physics) , genetic counseling , medical education , prenatal diagnosis , alternative medicine , pregnancy , political science , social science , law , pathology , sociology , genetics , paleontology , physics , economics , fetus , biology , microeconomics , quantum mechanics
Objective To gain a better understanding of healthcare professionals' practice and attitudes regarding prenatal β ‐thalassemia carrier screening in Australia. Method Qualitative study with semi‐structured interviews of healthcare professionals (obstetricians, general practitioners, midwives, genetic counselors, and hematologists) involved in prenatal thalassemia carrier screening in public and private practice. Results Twenty‐three healthcare providers were interviewed and several themes emerged. Participants described and acknowledged inconsistencies in the β ‐thalassemia screening processes, such as variability in ordering the tests, communicating the diagnosis, and action taken after diagnosis. They indicated a preference for more structure and valued the importance of screening guidelines but many of those involved in ordering the screening test were unaware of their availability. These healthcare professionals recognized they lacked knowledge regarding the screening process, and many had not undertaken education activities in this area in recent times. There were mixed views about the consent process, particularly at which stage this should be obtained, and what information is provided. Conclusions β ‐thalassemia screening in Victoria occurs with apparent lack of awareness of guidelines and an acknowledged preference for a more systematic process and educational support. Informed consent was not considered an important component of this screening process. © 2013 John Wiley & Sons, Ltd.