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Disclosing the diagnosis of Down syndrome: the experience of 50 Irish parents
  1. Aisling Mary Smith,
  2. Mark O’Rahelly,
  3. Orla Flanagan
  1. Paediatrics, Galway University Hospitals, Galway, Ireland
  1. Correspondence to Dr Aisling Mary Smith, Department of Neonatology, Cork University Maternity Hospital, Cork, Ireland; smithai{at}tcd.ie

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Communicating the diagnosis of Down syndrome (DS) to parents in a kind and sensitive manner is essential. The aim of our study was to evaluate parental experience of this discussion at the birth of their baby. This was a cross-sectional study of all parents of a child born with DS during the last 20 years and linked with Early Interventions Services in Galway, Ireland. Parents were first contacted via telephone to discuss the study, and with their consent a postal survey was sent to them to complete anonymously. We were successful in contacting 84 of 106 eligible families (79%) via telephone. We received 50 complete surveys back, giving a response rate of 60%.

Thirty-seven (44%) parents reported that they had no suspicions of DS prior to being told and 36 (72%) were congratulated on the birth of their child (table 1). Forty (80%) mothers reported that their husband/partner was with them when the diagnosis was first discussed. The first discussion of DS took place antenatally in 4 (8%) cases, within the first hour in 25 (50%) cases, between 2 and 24 hours postdelivery in 12 (24%) cases, between 24 and 48 hours in 5 (10%) cases, over 48 hours in 3 (6%) cases, and 1 (2%) survey had no response. …

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Footnotes

  • Patient consent for publication Not required.

  • Contributors AMS conceptualised and designed the study and data collection instruments, collected data, drafted the initial manuscript, and reviewed and revised the manuscript. MO’R designed the data collection instrument, collected data and reviewed the manuscript. OF conceptualised and designed the study and data collection instruments, and critically reviewed and revised the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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