Handbook of Disease Burdens and Quality of Life Measures pp 2483-2502 | Cite as
Quality of Life in Healthy and Chronically Ill Icelandic Children: Agreement Between Child’s Self-Report and Parents’ Proxy-Report
The purpose of this chapter is to report on findings on level of agreement between 10 and 12-year-old healthy and chronically ill Icelandic pre-teenagers’ reports and their mothers’ and fathers’ proxy-reports on the children’s health related quality of life (HRQOL) and to view the findings in the light of the international literature. The research is cross-sectional and was introduced to 1,079 children in 5th and 6th grade and their parents. Out of those, 480 children (209 boys and 271 girls) and 912 parents (510 mothers and 402 fathers) gave their written consent and participated in the study. Data were collected from March to early June 2004 in 12 randomly selected public elementary schools in Reykjavik, Iceland. Descriptive statistics and dependent t-test were used to answer the research questions and to test the hypotheses. The main findings were that Icelandic pre-teenagers’ self-report differed significantly from their mothers’ and fathers’ proxy-report on the social and school functioning subscales of the HRQOL measure, as well as on the overall HRQOL score. Further findings were that mothers of healthy children and both parents of chronically ill children differed significantly from their children in their perception of the physical functioning of the child. These findings emphasize that parents’ proxy-report cannot be substituted for the pre-teenagers’ report on their own HRQOL. However, within the subscale of emotional functioning, the children and their parents were found to agree. Agreement was also found between fathers and their healthy children on the physical functioning subscale. This suggests that Icelandic parents can provide valid information on their children’s physical and emotional functioning, which can be used as a substitute for the children’s own response. Although parents’ proxy-report can only substitute a child’s self-report within the emotional and physical functioning subscale, a proxy-report can add needed and valid information regarding parents’ perspective on their pre-teenagers’ HRQOL.
KeywordsSchool Functioning Emotional Functioning Functioning Subscale Physical Functioning Subscale Dual Parent Family
List of Abbreviations:
health related quality of life
quality of life
- Whitney B. (2005). Fam Community Health. 28: 176–183.Google Scholar