Your baby has down syndrome: a reflexive thematic analysis of breaking the news to parents
- PMID: 40329204
- PMCID: PMC12054234
- DOI: 10.1186/s12884-025-07665-2
Your baby has down syndrome: a reflexive thematic analysis of breaking the news to parents
Abstract
The communication of a Down syndrome diagnosis to mothers is a pivotal moment that can impact their emotional well-being and the subsequent care for their child. This study aimed to explore maternal experiences with receiving a Down syndrome diagnosis. A total of 40 mothers participated, 42.5% received a prenatal diagnosis, 17.5% received the diagnosis during labor and delivery, and 40% received the information at the early postnatal period. Through reflexive thematic analysis, four key themes emerged: (1) About Who and How the News Was Delivered (2), About When the News Was Delivered (3), On Where the News Should Be Delivered (4), parents' positive experiences emerging from this, predominantly, negative episode. Our findings emphasize the need for improved training for healthcare professionals in delivering sensitive diagnoses, with an emphasis on empathy, accurate information, and support resources for families.
Keywords: Down syndrome diagnosis; Empathy; Healthcare communication; Maternal experience; Prenatal diagnosis; Support.
© 2025. The Author(s).
Conflict of interest statement
Declarations. Ethics approval and consent to participate: The present study was authorized by an Accredited Scientific Ethics Committee (Folio CEC2022011), by the Chilean Ministry of Health, and an amendment was requested to collect qualitative data from a subsample of 40 mothers. The mothers that participated in this study signed a written informed consent. Consent for publication: The participants gave their informed written consent to have the anonymized data analysed and published. Competing interests: The authors declare no competing interests.
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References
-
- Al-Biltagi M. Down syndrome from epidemiologic point of view. EC Pediatr. 2015;1(2):82–91.
-
- Matamala P, Barrera C, Valdes E, Pedraza D, Manieu D, Parra M. P030: implementation of nuchal translucency screening in the detection of major congenital structural defects and chromosomal abnormalities in a Chilean population. Ultrasound Obstet Gynecol. 2003;22(S1):79–79.
-
- Badke HE, Cooley K, Luce CE. Down syndrome and the importance of a neutral diagnosis delivery: A community service project. Bethel University; 2022.
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Grants and funding
- 1221400/Fondo Nacional de Desarrollo Científico y Tecnológico CHILE
- 11241078/Fondo Nacional de Desarrollo Científico y Tecnológico CHILE
- ICS2019_024/ANID - Millennium Science Initiative Program - Millennium Institute for Care Research
- NCS2022_039/ANID - Millennium Science Initiative Program - Millennium Nucleus Studies on Disability and Citizenship (DISCA)
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