Introduction: The experience of normal pregnancy is often disrupted for women with preeclampsia (PE).
Materials and methods: Postal survey of the 112 members of the consumer group, Australian Action on Pre-Eclampsia (AAPEC).
Results: Surveys were returned by 68 women (61% response rate) and from 64 (57%) partners, close relatives or friends. Respondents reported experiencing pre-eclampsia (n = 53), eclampsia (n = 5), and/or Hemolysis, Elevated Liver enzymes, and Low Platelets (HELLP syndrome) (n = 26). Many women had no knowledge of PE prior to diagnosis (77%) and, once diagnosed, did not appreciate how serious or life threatening it was (50%). Women wanted access to information about PE. Their experience contributed substantial anxiety towards future pregnancies. Partners/friends/relatives expressed fear for the woman and/or her baby and had no prior understanding of PE.
Conclusions: The PE experience had a substantial effect on women, their confidants, and their babies and affected their approach to future pregnancies. Access to information about PE was viewed as very important.