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

Title: Down Syndrome in British Maternity Care: Mothers' Experiences of Prenatal Testing and Receiving a Prenatal or Postnatal Diagnosis
Language: English
Authors: Tamar Rutter (ORCID 0000-0003-1218-0312); Richard Hastings (ORCID 0000-0002-0495-8270); Nicola Enoch; Samantha Flynn (ORCID 0000-0003-3466-9506); Matthew Randell (ORCID 0000-0001-5856-3007); Chris Stinton
Source: Journal of Applied Research in Intellectual Disabilities. 2025 38(6).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 15
Publication Date: 2025
Document Type: Journal Articles; Reports - Research
Descriptors: Down Syndrome; Mothers; Clinical Diagnosis; Children; Diagnostic Tests; Access to Information; Foreign Countries; Decision Making; Self Determination; Allied Health Personnel; Behavior; Interpersonal Communication; Mental Health; Well Being
Geographic Terms: United Kingdom (Great Britain)
DOI: 10.1111/jar.70160
ISSN: 1360-2322; 1468-3148
Abstract: 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 However, many participants felt information about Down syndrome was imbalanced, outdated, or insufficient.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.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1494013
Database: ERIC