Parent and child perceptions of disordered speech associated with cleft lip and/or palate

Abstract

Background & Purpose Approximately 50% of children born with cleft lip and/or palate (CL/P) will need speech and language intervention (Lockhart, 2003). Speech difficulties are related to poorer academic performance, higher risk of retention in younger grades, and greater risk of being bullied or having a low self-esteem (Byrd, 1994; Lockhart, 2003). Since parents are the primary decision makers when it comes to treatment for their child, how closely do parents' perceptions of speech, appearance, and emotional consequences match the perception of their child? This study assessed differences in perceptions between parents and children with CL/P regarding speech, the emotional impact of having a cleft, and quality of life. Methods & Description Twenty parent-child dyads were recruited at a University based cleft palate clinic. The children were between 7 and 17 years of age, with a diagnosis of cleft palate, cleft lip and alveolus, submucous cleft only, or cleft lip and palate. During a routine clinic appointment, the child and a parent/legal guardian completed the VPI Effects of Life Outcome (VELO) Survey. Parents and children completed the VELO Survey separately to facilitate open, unbiased responses, especially regarding sensitive issues such as facial appearance and emotional health. Results Overall, parents and their affected children did not view the child's speech significantly differently. A Wilcoxon signed rank test found that the differences between parent and child responses were not significant (p=0.3979). Gender, age, and cleft type were v not found to have statistically significant impact on differences between parent and child scores. The VELO Survey is divided into five main sections. This study identified the subsection relating to speaking in various situations as having a significantly greater parental concern when compared across all VELO subsections. After applying a Bonferroni multiple comparison adjustment to control the type error rate at 0.05 for all five subsections, a statistically significant relationship was found indicating higher parent ratings than their child in this subsection (p=0. 0.0184). Speech-language pathologist ratings showed a statistically significant linear relationship with the child total VELO scores (p=0.0116), and with parent total VELO scores (p=0.0009). This means that a higher score on the VELO by the parent or the child, and a lower SLP rating, both indicate lower severity of impact of the cleft disorder on the child's life. Conclusion While parents, children, and the speech-language pathologist often agreed with each other in their rating how having a cleft affected the child's life, significant differences did exist between some parent-child dyads. These differences have important clinical implications, primarily the importance of including both parents and children in discussions of the impact of the cleft condition and treatment options. vi