The role of the clinical nurse specialist from the perspective of parents of children born with cleft lip and/or palate in the United Kingdom: a qualitative study

Purpose/Aim: This qualitative study explores parents' perspectives of the clinical nurse specialist (CNS) after diagnosis of cleft lip and/or palate and while preparing for/after lip or palate closure and other events on the cleft treatment pathway in the United Kingdom. Design: Parents with children on the "cleft treatment pathway" were recruited from multiple regions across the United Kingdom. In-depth interviews were conducted with 24 parents of children born with cleft lip and/or palate. Methods: Thematic analysis identified 4 key themes: relationship with CNS, information provision, preoperative care and multidisciplinary team (MDT), and postoperative support. Results: Clinical nurse specialists are a highly valued point of contact and act as a trusted mediator between parents and other professionals in the MDT. Clinical nurse specialists are important gatekeepers in providing support and information and developing trust after diagnosis and birth and throughout the cleft treatment pathway. Conclusion: The present findings affirm the emotional, social, and informational support that the CNS can offer parents whose children are on a cleft treatment pathway. The CNS is a vital member of the cleft service MDT.