Health Related Quality of Life for Children with Cleft Lip and/or Palate

Date
2011
Authors
Sinclair, Sandra
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Niederhauser, V.
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Nursing
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University of Hawaii at Manoa
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Abstract
A child's health-related quality of life (HRQOL) is a multidimensional, subjective construct that is perceived as a result of the impact that a condition has on the child's physical, emotional, social, and cognitive functioning (WHO, 1995). This study measured HRQOL for a culturally diverse sample of children with cleft lip and/or palate to include parent proxy reports and child self reports. A descriptive quantitative design was utilized. One hundred subjects participated in the study, including 62 parents and 38 children who completed the PedsQL instrument. Results revealed that parents of children with an oral cleft rated their children's Physical Health higher than a normative sample of parents of healthy children which was an unexpected finding. Otherwise, parents of children with an oral cleft and the children themselves rated their Emotional Functioning, Social Functioning, School Functioning, overall Psychosocial Functioning, and Total HRQOL lower than healthy children and higher than children with a chronic condition. Parent-child concordance was quite low in all domains with the highest correlation being only .20 on the Emotional Functioning scale. Demographic variables, speech impairment, and hearing severity did not affect HRQOL scores. Wearing a hearing aid had a significant affect on School Functioning according to the parent's perspective. Overall, the PedsQL was found to be an effective and quick measure of HRQOL for children with an oral cleft that could be utilized during the multidisciplinary cleft clinic to identify children who are at-risk for impaired HRQOL. Since parent-child agreement was low, children should be given every opportunity to rate their own HRQOL. Once individual concerns have been identified, health care providers can then implement care and treatment to maximize the child's satisfaction with health and well-being.
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164 pages
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Theses for the degree of Doctor of Philosophy (University of Hawaii at Manoa). Nursing ; no. 5710
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