Study Finds Cleft Nurse Specialist Pivotal for CL/P Families

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  • Study compared cohorts of parents before and after the addition of a CNS to cleft care teams in 2012.
  • Parents felt more supported after receiving services from the CNS.

CHAPEL HILL, N.C. / Dec. 8, 2020–Home visits, direct contact and support from the cleft nurse specialist (CNS) are pivotal for the families of children with cleft lip and palate (CL/P), according to a recent study. The results were published in the December 2020 issue of The Cleft Palate-Craniofacial Journal (CPCJ).

“The authors should be applauded for their work in systematically investigating the benefits that a CNS brings to cleft care. Results demonstrate that a CNS improves both prenatal and postnatal cleft care. This is a valuable and much needed contribution to the literature and has applicable benefits that can improve cleft care,” said Jamie L. Perry, PhD, CCC-SLP, editor of The Cleft Palate-Craniofacial Journal.

A diagnosis of CL/P can be extremely difficult for the child’s parents. In recent years, an improving antenatal diagnosis rate offers parents the time to adjust and prepare. A key part of this preparation is counseling and support from the cleft team, including the likely trajectory of care required from the early neonatal period, through childhood, adolescence, and up to adult life.

“The addition of a CNS in 2012, to the regional cleft unit in Northern Ireland, has significantly improved the care that both parents and babies receive throughout their cleft journey,” according to Serena Martin, lead researcher. “In this study, we wanted to qualitatively determine the impact of the CNS by comparing two separate cohorts of parents, before and after the introduction of the CNS in 2012.

The cleft database was used to locate babies born in Northern Ireland with CL/P in 2010/2011 and 2013/2014. Parents were contacted by phone and asked if they would be willing to complete a questionnaire that asked about family history of CL/P, the parents’ interactions with the cleft team, and the resources and support the family received.

Parents of 38 babies participated in the survey, with 19 parents representing each cohort. Overall, the parents in the 2010/2011 cohort felt less supported during pregnancy, after birth and during the time of their child’s primary surgery. In contrast, parents in the 2013/2014 cohort felt more supported throughout their cleft journey by the cleft team. In particular, these parents reported overwhelmingly positive experiences as a result of the support and services received from the CNS.

“Our study confirmed that the CNS plays a pivotal role in the cleft care pathway for the parents and the child, while also serving as a key member of the wider cleft multidisciplinary team,” Martin said. “Through home visits and providing information and assistance with feeding in the early days after birth, parents felt more supported during a challenging time of their child’s life.”

To learn more about the American Cleft Palate-Craniofacial Association and cleft and craniofacial conditions, please visit acpa-cpf.org.

About the American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit 501(c)(3) association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. Since 1943, ACPA has worked to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy and interdisciplinary team care. ACPA also provides information to affected individuals and families and seeks to educate the public about facial differences through its ACPA Family Services program. For more information, please visit acpa-cpf.org.