Abstracts

QUALITY OF LIFE, COPING AND CHRONIC SORROW IN FAMILIES OF CHILDREN WITH EPILEPSY

Abstract number : 2.136
Submission category :
Year : 2004
Submission ID : 4658
Source : www.aesnet.org
Presentation date : 12/2/2004 12:00:00 AM
Published date : Dec 1, 2004, 06:00 AM

Authors :
1Elizabeth F. Hobdell, 1Ignacio Valencia, 2Mitzie L. Grant, 1Sanjeev V. Kothare, 1Huntley H. Hardison, 1Agustin Legido, and 1Divya S. Khurana

The diagnosis of epilepsy in a child affects not only the child[rsquo]s quality of life (QOL) but also impacts on other family members. Parents use different coping behaviors to assist in dealing with their child[rsquo]s diagnosis. Chronic sorrow has been described in parents of children with other chronic health conditions. This is an ongoing study which aims to measure QOL in children with epilepsy, compare it with parental perceptions of their child[rsquo]s QOL, quantify chronic sorrow and study different coping behaviors in parents. A second aim is to delineate the relationships between health related QOL, coping and chronic sorrow in parents of children with epilepsy and to compare these variables with a population of children with migraine. Children and their parents were enrolled from an outpatient neurology practice at a tertiary care children[rsquo]s hospital. All children who were able to were asked to complete a pediatric quality of life questionnaire (Peds QL[trade]). Parents, in addition to completing the parent version of the Peds QL[trade] also completed a coping health inventory (CHIP: Coping Health Inventory for Parents) and the Adapted Burke Questionnaire (a questionnaire to quantify chronic sorrow). Sixty-seven children with epilepsy ( mean age 9.7 yrs) and 9 children with migraine (mean age 12.8 years) have been enrolled to date. Paired sample correlations of QOL data between 43 parent-child pairs show a good degree of correlation (0.6 -0.8) across all domains which is highly significant (p[lt] 0.0001). Paired sample t-test does not demonstrate significant differences between parent and child. The most significant impact on QOL is in the physical and psychosocial aspects. Chronic sorrow is highly prevalent with a mean score of 10.45 (maximum score = 24) with a standard deviation of 7.9 in parents of children with epilepsy. Chronic sorrow also correlates highly with coping style 2 (maintaining social support, self esteem and psychological stability) and with physical measures of QOL but has a negative correlation with the psychosocial measures of QOL. T- tests of QOL scores between patients with epilepsy and migraine demonstrate significant differences in the psychosocial and physical aspects, even with the small number of migraineurs enrolled so far. There is good agreement between parent and child perception of the impact of epilepsy on the child[rsquo]s HRQOL. Chronic sorrow is highly prevalent in parents of children with epilepsy and correlates with specific coping behaviors. Structured interventions to influence these coping behaviors may decrease chronic sorrow and thus have a positive impact on parental perception of their childs HRQOL (Supported by St. Christopher[apos]s Foundation for Children)