Abstract
Autonomy and informed decision making are important aspects for prenatal genetic screening and diagnostics. Midwives’ knowledge and skills are essential to provide adequate information about prenatal testing to expecting parents to enable informed decisions. Information from midwives to parents about prenatal genetic testing has been found to not always be adequate, and parents’ needs not always understood. As new methods are introduced, the scope of analysis is widening. In order to achieve informed decision-making, it is important to understand the questions and expectations midwives meet from expecting parents. This study explores the questions and expectations midwives meet from expecting parents regarding prenatal genetic testing, and how uncertainties are perceived and valued. A questionnaire was distributed through a midwife with a national coordinating role, to all midwives in primary maternity care and to the 8 ultrasonography clinics in the Stockholm region, as well as to midwives across Sweden via regional coordination midwives. The responding midwives ( N = 71) represented different health care regions in Sweden, working both in primary maternity healthcare and as ultrasonography specialists. Midwives were found to perceive an increased number of questions about noninvasive prenatal testing (NIPT) but a proportion of midwives are not completely confident to answer these questions. Midwives get questions about trisomy 21, other trisomies and sex chromosome abnormalities, but also neuropsychiatric conditions. Methods for invasive, diagnostic testing do not seem to be discussed when accepting offer of initial screening. Midwives are aware of uncertain and secondary findings, but fewer have discussed this with parents. Continuing education and support for midwives is essential – and should put additional focus on developing understanding around established methods like NIPT, but also on more comprehensive genomic test methods such as microarray and massive parallel sequencing techniques as well as challenges around discussing conditions tested for and test results, including uncertain results and secondary findings, with expecting parents.