A researcher from the University of Cardiff would like to interview parents in the UK who are currently raising or have raised a child who has Down syndrome.

Please note that the DSA supports the aims of this study but any text describing/advertising the study is provided by the research team.

This study aims to explore how parents’ experiences of raising a child with Down syndrome shape their views on reproductive decision-making, including their perceptions of prenatal screening in subsequent pregnancies.

Every family’s experience is different, and raising a child with Down syndrome may influence how parents think about having more children and how they feel about prenatal screening. Understanding these perspectives can help provide a more complete picture of the experiences that shape reproductive decision-making.

The study will involve individual online interviews lasting approximately one hour with parents aged 18 or over, who live in the UK, and are currently raising or have raised their child with Down syndrome. Participants do not need to be pregnant or planning another pregnancy to take part. The interviews will explore parents’ experiences through their own words, including how raising their child may have influenced their thoughts about subsequent pregnancies, prenatal screening and reproductive choices.

The findings will contribute to a better understanding of parents’ experiences and may help improve the information and support provided through genetic counselling and prenatal screening services for families considering future pregnancies.

Participation is voluntary, and research data will be handled confidentially in accordance with the approved study procedures.

Additional Information

About the Researchers

Phoebe Androulaki

I am an MSc Genetic and Genomic Counselling student at Cardiff University with a background in Biomedical Sciences. Having a personal connection to Down syndrome, I hope to better understand families’ experiences and provide people from the Down syndrome community with an opportunity to share their experiences in their own words.

Dr Nicki Taverner

I am the Programme Director for the MSc programme which trains students to become genetic counsellors for the NHS and other organisations. We know it is important for students to understand families’ experiences to provide good clinical care, and I am keen to support Phoebe to learn from the Down syndrome community.

The post Exploring How the Lived Experience of Raising a Child with Down Syndrome Shapes Parents’ Views on Reproductive Decision-making: a Qualitative Interview Study appeared first on Downs Syndrome Association.

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