Doctoral and pre-doctoral projects

Project title:

Family experiences of Down syndrome: From prenatal testing to parenthood

Project team:

Tamar Rutter, Warwick Medical School, University of Warwick

Dr Chris Stinton, Warwick Medical School, University of Warwick

Professor Richard Hastings, Intellectual Disabilities Research Institute, University of Birmingham

Partner Charity:

Down Syndrome UK

This PhD project is a collaboration between researchers at Warwick Medical School and the Intellectual Disabilities Research Institute at the University of Birmingham, and the charity Down Syndrome UK. The project focuses on the experiences of expectant and current parents of children with Down syndrome. It seeks to explore parental experiences of Down syndrome in the context of maternity healthcare settings offering prenatal testing and diagnosis. It also includes an investigation of the experiences of parents raising a child with Down syndrome. The research has been designed and conducted in partnership with Positive About Down Syndrome (PADS), an initiative of Down Syndrome UK, a family-led charity which supports families and expectant parents of children with Down syndrome. The project aims to produce evidence supporting a greater understanding of parental experiences of maternity healthcare in relation to Down syndrome; parental wellbeing; and how families can best be supported perinatally.

A key part of the project was a survey of mothers of a young child with Down syndrome about their maternity experiences. Findings from the survey which address mothers’ experiences of prenatal screening have been published in the American Journal of Medical Genetics, available here. A report from the survey which focuses on mothers’ perceptions and experiences of perinatal mental health support is here (Link opens in a new windowLink opens in a new window). Other findings from the survey, which address mothers’ experiences of prenatal diagnostic testing and receiving a Down syndrome diagnosis, are in preparation for submission to an academic journal.

The researchers have conducted a second survey to investigate the care and support needs and experiences of fathers and other non-birth parents of children with Down syndrome. The data from this survey are currently being analysed and the results will be prepared for submission to an academic journal.

The project has also included a systematic review examining the psychological wellbeing of parents of children with Down syndrome in relation to that of parents with typically developing children. This study has been published in Clinical Psychology Review and is available here.

For further information about this project please contact Tamar Rutter, PhD student: tammy.rutter@warwick.ac.uk