Women´s experiences of preeclampsia as a condition of uncertainty: a qualitative study.

BACKGROUND: Preeclampsia is a severe condition that annually affects about 3-8% of pregnancies worldwide. Preeclampsia is thereby one of the most common pregnancy complications for both mother and child. Despite that, there is limited research exploring the women´s perspective of experiencing preeclampsia. AIM: The aim of this study was to describe women´s experiences of preeclampsia to improve the support and care given during and after pregnancy. METHODS: A qualitative descriptive interview study was undertaken. Nine women, diagnosed with preeclampsia, were recruited from a maternity unit in southern Sweden. The descriptive phenomenological method according to Amadeo Giorgi was used to analyse the data. RESULTS: The women´s experiences of PE were expressed as A condition of uncertainty, meaning that it was an unexpected and unknown situation. This main result consisted of 1) incomprehensible diagnosis message, 2) ambivalent feeling when the unexpected happens, 3) confusing contradictory messages, 4) appreciated support from the midwife, 5) need for continuous information. The nature of preeclampsia can sometimes deteriorate rapidly both for the mother and/or the child, often resulting in conversion from a planned vaginal spontaneous delivery to an emergency Caesarean section. The women narrated diffuse symptoms, and they experienced that they got contradictory information from different health care professionals regarding the severity of their disease. Detailed and continuous information is requested throughout the course of the disease, and the postpartum period. CONCLUSION: This qualitative study reveal a need for improved clinical management. Health care professionals must be aware that women and their partners need detailed, consistent and repeated information about severity and prognosis to diminish the condition of uncertainty, confusion and fearful experience. The clinical implication would be a standardized preeclampsia education for pregnant women early on in the pregnancy, to raise awareness of preeclamptic symptoms. Furthermore, there is a need for harmonized guidelines and individualized support to the woman and her partner both at the antenatal care and the maternity ward and inpatient care at the hospital.

What outcomes should researchers select, collect and report in pre-eclampsia research? A qualitative study exploring the views of women with lived experience of pre-eclampsia.

OBJECTIVE: To identify outcomes relevant to women with lived experience of pre-eclampsia. DESIGN: Qualitative interview study. SETTING: A national study conducted in the United Kingdom. SAMPLE: Purposive sample of women with lived experience of pre-eclampsia. METHODS: Thematic analysis of qualitative interview transcripts. RESULTS: Thirty women with lived experience of pre-eclampsia were interviewed. Thematic analysis identified 71 different treatment outcomes. Fifty-nine of these had been previously reported by pre-eclampsia trials. Outcomes related to maternal and neonatal morbidity, commonly reported by pre-eclampsia trials, were frequently discussed by women with lived experience of pre-eclampsia. Twelve outcomes had not been previously reported by pre-eclampsia trials. When compared with published research, it was evident that the outlook of women with lived experience of pre-eclampsia was broader. They considered pre-eclampsia in relation to the 'whole' person and attached special significance to outcomes relating to emotional wellbeing and the future health, development and wellbeing of their offspring. CONCLUSIONS: Selecting, collecting and reporting outcomes relevant to women with pre-eclampsia should ensure that future pre-eclampsia research has the necessary reach and relevance to inform clinical practice. Future core outcome set development studies should use qualitative research methods to ensure that the long list of potential core outcomes holds relevance to patients. TWEETABLE ABSTRACT: What do women want? A national study identifies key treatment outcomes for women with pre-eclampsia. Next step: @coreoutcomes for #preeclampsia @NIHR_DC.