Document Type

Thesis

Date of Degree

Spring 2016

Degree Name

MA (Master of Arts)

Degree In

Speech Pathology and Audiology

First Advisor

Jerald B. Moon

Abstract

Background & Purpose

Approximately 50β 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 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.

Public Abstract

When a child is diagnosed with an oral cleft condition, such as cleft lip and/or palate (CL/P), parents are faced with serious decisions regarding their child’s medical care. As a child with CL/P gets older, he or she will become more aware of the physical and emotional challenges associated with living with CL/P. While parents drive the majority of medical and behavioral intervention choices (at least pre-adolescence), children with CL/P may have a different perception than their parents regarding the impact of CL/P on speech and social adjustment. This study assessed differences in perceptions between parents and children with CL/P regarding speech, the emotional impact, and effect on quality-of-life.

Twenty parent-child pairs 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 separately to facilitate open, unbiased responses.

Overall, parents and their affected children did not view the child’s speech significantly differently from each other. Gender, age, and cleft type were not found to have statistically significant impact on the differences between parent and child scores. This study identified one of the five subsections of the VELO, the subsection relating to speaking in various situations, as having a statistically significantly greater parental concern than child concern. When comparing parent and child responses to the rating of intelligibility from the speech-language pathologist, the researchers found that a higher score on the VELO by the parent or the child often correlated with a lower SLP rating, which both indicate a less severe impact of the cleft disorder on the child’s life.

Keywords

publicabstract, child, cleft palate, parent, perceptions, quality-of-life, speech

Pages

x, 57

Bibliography

53-57

Copyright

Copyright 2016 Kristina Lynn Warndahl

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