Bereavement Survey for parents relaunched after Covid-19 postponement

We want to ensure that bereavement care after a baby dies meets the needs of as many families as possible. We have found that very little is known about providing care for women and their families after their baby has died due to pre-eclampsia, or closely associated conditions.

Action on Preeclampsia/ SANDS are collaborating with the University of Manchester to explore the experiences of families who have been affected by stillbirth or neonatal death in preeclampsia, to ultimately improve the care of families. We want to learn the views of families who have been affected by stillbirth or neonatal death whose pregnancies were complicated by preeclampsia. We would like to hear from you if you have been affected in the last 10 years. This is because we would like to review current practice, as we know perinatal bereavement care has changed a lot over the last few decades.

We are doing this research project to find out what parents have found helpful, and perhaps identify areas gaps in the care which they received. We would like to use this information to find out how we can improve provision for families in the future whose baby will unfortunately die after the mother has preeclampsia.

We understand that recalling memories and events around the time that your baby died can raise difficult emotions; we also understand that being unwell with pre-eclampsia may make it hard to recall events from difficult times. Please remember this questionnaire is completely voluntary, and it is very important you feel ready to complete the survey.

Any future care or ongoing care from your health care provider will not be influenced by whether the survey is completed, and the medical team will not know whether a survey has been completed, or the content of the survey responses.

The questionnaire usually takes approximately 30 minutes to complete. The questionnaire must be completed in one sitting. If you close the browser window, your responses will not be saved. If you feel that your responses differ from your partner’s, please send one copy of the form each.

Please see the Participant Information Sheet for more details of this research. It is important you read and understand this before completing the questionnaire. You will be asked to confirm you have read and understood the information prior to proceeding with the survey.

The survey can be accessed and completed by clicking on the following link:

https://apps.mhs.manchester.ac.uk/surveys//TakeSurvey.aspx?SurveyID=n4K06l72I

Thank you for taking the time to read this survey. Please complete this survey before 30/11/2020. After this point, we will not be collecting further surveys and unfortunately if your response can’t be used. We would be grateful for your assistance to help us improve the care we provide to other parents who have been bereaved due to pre-eclampsia.

Please note that this survey had previously been available to fill in from March- May 2020. In accordance with University of Manchester guidelines, we chose to temporarily suspend data collection due to COVID-19. As outlined above, the survey is again open. If you have already completed the survey, thank you! You do not need to fill another in- we have saved your responses and they will be used to help us in this research.

Thank you for your time in reading this information.

Prof. Alexander Heazell

Action on Preeclampsia/ Sands and the research team at the University of Manchester