Down Syndrome in British Maternity Care: Mothers' Experiences of Prenatal Testing and Receiving a Prenatal or Postnatal Diagnosis.

BACKGROUND

Parental experiences of prenatal testing and receiving a Down syndrome diagnosis for their child are impacted by the quality of information and support available. We explored the care experiences of mothers living in Great Britain who received a prenatal or postnatal Down syndrome diagnosis.

METHOD: Mothers (N = 280) of children with Down syndrome born between 2019 and 2022 completed an online survey about being offered prenatal diagnostic testing and receiving a prenatal or postnatal diagnosis.

RESULTS

Qualitative findings underscored the impact of sensitive, supportive care and communication on participants' sense of autonomy and emotional adjustment. However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient. Some also reported feeling pressured to undergo diagnostic testing or pregnancy termination.

CONCLUSIONS

The findings highlight the importance of communication that prioritises individual needs, and of ensuring healthcare professionals are equipped to support parents as they begin their parenting journey.