Information prior to prenatal diagnosis : Knowledge, informational needs and decision-making

Abstract: The overall aim of this thesis was to explore different aspects of information relevant to decision-making regarding prenatal diagnosis (PND) for chromosomal anomalies (CA). In Papers I–II, women and partners undergoing combined ultrasound and biochemistry (CUB) tests, invasive tests or declining PND for CAs answered a questionnaire. Overall, expectant parents had varying to low levels of knowledge about Down syndrome (DS), with few differences between women and partners, or between those accepting or declining PND. Thus, knowledge at these levels does not seem to influence the decision to accept or decline PND. Some seem to regard CUB as a routine test.Paper III explored midwives' perspectives with a questionnaire. The majority believed they had not received sufficient education about PND, and few felt knowledgeable enough to provide information about DS. Most midwives desired more education regarding tests and DS. Actual knowledge levels concerning DS varied, and in some cases, were low.Paper IV explored the factors influencing decisions concerning PND through interviews with pregnant women. The decision-making process is affected by individual factors (i.e. attitude towards anomalies, worry and need for reassurance, and self-perceived risk) and external factors (i.e. test characteristics and influence from others). The quality of life for an affected individual and the impact on the family is important for some women when making decisions about PND. Healthcare professionals can influence women’s decisions through their attitudes, how they present the tests, and the woman’s individual probability of CAs.Paper V used Q methodology to explore women’s views on what is important when receiving information about PND. Some women prefer receiving information gradually, while others prefer comprehensive information early in pregnancy. Some value information about the conditions tested for early in the process. The extent to which women wanted to involve their partner in the decision-making process varied. None preferred group information sessions.In conclusion, providing information and pre-test counselling to pregnant women is a complex task. There is room for improvement in the information provided to expectant parents, and in the education provided to midwives related to PND and DS. Women’s decisions regarding PND are influenced by both individual and external factors. Information about test characteristics and conditions tested for could be helpful for pregnant women when they make decisions. Healthcare professionals’ approach can influence women’s decisions. Women have varying informational needs, making individual and non-directive pre-test counselling with a competent healthcare professional essential to facilitate informed decision-making.