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The cleft nurse specialist (CNS) plays a key role in counselling and supporting parents from the diagnosis onward. The CNS started in 2012 and we aimed to perform a qualitative study to determine the benefits this brought to the cleft community from the parents' perspective. The cleft database was used to locate babies born in 2010/2011 and 2013/2014. Parents were contacted by phone by 2 authors and completed a questionnaire on the care and support they received following the diagnosis, in the early days and around the time of surgery. Parents of 38 babies completed the survey. In 2010/2011, only 21% had an antenatal diagnosis compared to 47% in 2013/2014.2011/2012: 3 unilateral cleft lip and palate (UCLP), 3 bilateral cleft lip and palate (BCLP), 4 CLO, 9 cleft palate only (CPO).2013/2014: 5 UCLP, 7 BCLP, 7 CPO.2011/2012: 68% were counselled by a surgeon, 42% were seen >1 week after birth, with some over a month.2013/2014: 84% were counselled by the CNS, 53% were seen within 48 hours, and 100% within 7 days.Parents in 2013/2014 felt more supported by the cleft team throughout pregnancy and the early days, with home visits being particularly advantageous. The introduction of the CNS to the cleft multidisciplinary team has significantly improved the pathway for parents and is a key link with the wider cleft team. With the improvement in antenatal diagnosis, counselling occurs at an earlier stage and prepares parents for the difficulties commonly experienced in the early days. Key themes included; home visits and direct contact with the CNS.


Serena Martin, Emma Slevin, Chris Hill. The Cleft Nurse Specialist: A Key Building Block in the Cleft Multidisciplinary Team. The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association. 2020 Dec;57(12):1351-1356

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PMID: 32787615

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