Down syndrome in maternity care:Mothers’ experiences of mental health support

Nicola Enoch¹, Tamar Rutter², Richard Hastings³, Chris Stinton²
1 - Down Syndrome UK 2 - University of Warwick 3 - University of Birmingham

Introdcution

Receiving unexpected news about an unborn or newborn child is an emotional, impactful life event.It is essential that parents receiving a higher chance screening result or Down syndrome diagnosis receive appropriate information and support, lack of support and information can exacerbate risks of poor maternal mental health in the perinatal period.

Objectives

To investigate how mothers of children with Down syndrome experienced their NHS maternity care, and its impact on their mental wellbeing. To highlight the importance of positive practice as well as areas where greater mental health support is needed.

Methods

Anonymous online survey -Open and closed questions about maternity care experiences from screening to postnatal period.
Mothers of children with Down syndrome born from 2019 – 2022 in England, Scotland or Wales (N = 317) Recruited online via DSUK parent networks.
Participants received: prenatal diagnosis (19.1%), higher chance prenatal screening result(s) (30.0%) or postnatal diagnosis (50.9%) of Down syndrome.

Conclusions and Inplications

Most mothers of children with Down syndrome felt there was insufficient support for their mental wellbeing both during and after pregnancy. There is a discrepancy with general population: 85% of women surveyed nationally felt there was enough mental health support available during pregnancy vs 38% of our participants who are parents of children with Down syndrome.
There are important opportunities to positively impact mothers’ wellbeing during this critical period by: recognising and responding to their individual emotional needs; supporting their decisions; providing reassurance; and facilitating connections
Up to date resources and information, and Down syndrome training, must be available to healthcare professionals to ensure they can meet parents’ essential support needs.