The Cleft Nurse Specialist: A Key Building Block in the Cleft Multidisciplinary Team.

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 3. Descriptive study of postoperative nursing care following first stage cleft closure.

BACKGROUND: Cleft lip and palate is one of the most common congenital anomalies requiring surgical treatment in children, normally commenced in the first year of life. Following the initiation of a group of multicentre surgical trials of primary surgery, variations in postoperative recovery and management became apparent. An agreement was made for a nurse-led survey in eight surgical centres to document postoperative care and recovery. MATERIALS AND METHODS: A postoperative recovery clinical report form was developed to capture relevant data for the children participating in the four arms of the trials. This included the age and weight at admission, the postoperative recovery setting, pain management, postoperative feeding, post-operative complications, and length of hospital stay. RESULTS: Four hundred and three nursing forms from the first surgical procedure were returned for analysis. Differences in important aspects of care such as postoperative analgesia and postoperative feeding were evident. Postoperative care was influenced by local custom and practice, as little firm clinical evidence exists to guide optimal management. CONCLUSION: Postoperative recovery may play a significant role in the future selection of surgical protocols, and future trials need to consider cross-study site training to familiarise nurses, prior to any changes in surgical methods. TRIAL REGISTRATION: ISRCTN29932826.