Journal of applied research in intellectual disabilities : JARID · 2025
Down Syndrome in British Maternity Care: Mothers' Experiences of Prenatal Testing and Receiving a Prenatal or Postnatal Diagnosis.
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Rutter Tamar, Hastings Richard, Enoch Nicola, Flynn Samantha, Randell Matthew, Stinton Chris
Аннотация
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 However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient.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.
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 However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient.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.