Challenges to Providing Fetal Anomaly Testing in a Cross‐Cultural Environment: Experiences of Practitioners Caring for Aboriginal Women

Alice R Rumbold, Kayli J Wild, Elaine Lawurrpa Maypilama, Sue V Kildea, Lesley Barclay, Euan M Wallace, Jacqueline A Boyle

Across Australia there are substantial disparities in uptake of antenatal testing for fetal anomalies, with very low uptake observed among Aboriginal women. The reasons behind these disparities are unclear, although poorer access to testing has been reported in some communities. We interviewed health care practitioners to explore the perceived barriers to providing fetal anomaly screening to Aboriginal women. In 2009 and 2010, in-depth interviews were undertaken with 59 practitioners in five urban and remote sites across the Northern Territory (NT) of Australia. Data were analyzed thematically. Maximum variation sampling, independent review of findings by multiple analysts, and participant feedback were undertaken to strengthen the validity of findings. Participants included midwives (47%), Aboriginal health practitioners (AHP) (32%), general practitioners (12%), and obstetricians (9%); almost all (95%) were female. Participants consistently reported difficulties counseling women. Explaining the concept of "risk" (of abnormalities and the screening test result) was identified as particularly challenging, because of a perceived lack of an equivalent concept in Aboriginal languages. While AHPs could assist with overcoming language barriers, they are underutilized. Participants also identified impediments to organizing testing including difficulties establishing gestational age, late presentation for care, and a lack of standardized information and training. The availability of fetal anomaly testing is challenged by communication difficulties, including a focus on culturally specific biomedical concepts, and organizational barriers to arranging testing. Developing educational activities that address the technical aspects of screening and communication skills will assist in improving access. These activities must include AHPs.