Down syndrome in prenatal and postnatal care: Fathers’ and non-birth parents’ experiences of testing and diagnosis

Thank you for your interest in this study!

This doctoral research project aims to investigate fathers’ and non-birth parents’ experiences of healthcare in relation to testing and diagnosis of their child’s Down syndrome.

Do you have a child with Down syndrome who was born in 2019 or later, and who is at least 2 months old? Were you living in England, Scotland, or Wales during the pregnancy period?

If so, you can offer valuable insights about the way information about Down syndrome and prenatal testing is communicated to expectant parents in British healthcare services. We would like to hear from biological and non-biological fathers, and other non-birth parents of any gender, such as non-birth mothers in same-sex relationships. We are particularly interested in fathers’ and non-birth parents’ experiences of care, communication and support during the diagnostic pathway, and their inclusion in care and decision-making. We would like to hear from fathers and other non-birth parents who received a prenatal diagnosis, and from those who received a postnatal diagnosis for their baby. This will help us understand perspectives about how testing and diagnosis is offered and delivered. The findings will be used to advocate for sensitive and respectful approaches to Down syndrome in healthcare settings.

Are you interested in taking part?

Participating in this study involves completing an online survey. The survey will take 10-20 minutes. It is anonymous—no identifiable personal information will be collected.

Full details of the study are provided in the Information Leaflet.

If you have read the information sheet and would like to take part, please click on the Link to survey Link opens in a new windowto begin completing the survey.

Do you have a question or comment about this study?

Please contact the PhD researcher Tamar Rutter if you would like to comment or ask a question about this study.

Email address —tammy.rutter@warwick.ac.uk

Telephone number—024 765 23638

This study is funded by the Economic and Social Research Council and Down Syndrome UK.