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Examining Perceived Stigma of Children with Newly-Diagnosed Epilepsy and Their Caregivers Over a Two-Year Period

Rood, Jennifer E

Abstract Details

2013, Doctor of Psychology (Psy.D.), Xavier University, Psychology.
Children with epilepsy, approximately 326,000 children under the age of 15 in the United States, are at a high risk for stigma (Begley et al., 2000; Jacoby & Austin, 2007). Long-term impacts of experiencing stigma include increased depression, poor self-concept, low overall quality of life, and low perception of ability to manage illness (Cheng-Fang et al., 2009; Dilorio et al., 2003; Funderburk et al., 2007; Leaffer et al., 2011; Weiss et al., 2006). Few studies have examined the perception of stigma (i.e., the internalized sense of shame that occurs from possessing a stigmatized attribute and the anticipation that others will discriminate against the stigmatized individual) among children with epilepsy (Jacoby & Austin, 2007). The aims of the current study are to: 1) examine the course of perceived epilepsy-related stigma among children and their caregivers 2) examine the influence of seizure absence/presence on children and caregivers' perception of epilepsy-related stigma and 3) examine the congruence of child and caregiver perception of child epilepsy-related stigma. Ninety-seven caregivers and 39 children with epilepsy participated in this longitudinal study, with children's ages ranging from 2 to 12, with a mean age of 7.14 ± 2.87. Using hierarchical linear modeling, both caregivers (t1, 76 = -2.57 p<.01) and children with epilepsy (t1, 29= -3.37, p<.01) reported decreasing amounts of epilepsy-related stigma from diagnosis to two-years post-diagnosis. However, there were no difference in caregiver report (t(65) = .93, p = .52) or child report (t(25) = -.89, p=.75) of perceived stigma with children currently experiencing seizures when compared to children who have been seizure-free for the past year. Additionally, intraclass correlations revealed poor caregiver-child agreement of perceived epilepsy-related stigma at baseline (r = .01, p =.49), one year following diagnosis (r=-.06, p=.83), and two years following diagnosis (r=-.049, p=.83). Specifically, caregivers reported higher levels of stigma compared to children at baseline and two years post-diagnosis; whereas children reported higher levels of stigma compared to caregivers at one year post-diagnosis. These findings suggest that children with epilepsy perceive decreasing amounts of epilepsy-related stigma over the first two years after diagnosis, but their level of stigma is not influenced by their seizure status. Finally, this study suggests that children and their caregivers have different opinions of the level of perceived stigma that children with epilepsy experience throughout the course of their first two years following diagnosis.
Janet R. Schultz, Ph.D., ABPP (Committee Chair)
Jennifer Gibson, Ph.D. (Committee Member)
Avani C. Modi, Ph.D. (Committee Member)
113 p.

Recommended Citations

Citations

  • Rood, J. E. (2013). Examining Perceived Stigma of Children with Newly-Diagnosed Epilepsy and Their Caregivers Over a Two-Year Period [Doctoral dissertation, Xavier University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=xavier1401195838

    APA Style (7th edition)

  • Rood, Jennifer. Examining Perceived Stigma of Children with Newly-Diagnosed Epilepsy and Their Caregivers Over a Two-Year Period. 2013. Xavier University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=xavier1401195838.

    MLA Style (8th edition)

  • Rood, Jennifer. "Examining Perceived Stigma of Children with Newly-Diagnosed Epilepsy and Their Caregivers Over a Two-Year Period." Doctoral dissertation, Xavier University, 2013. http://rave.ohiolink.edu/etdc/view?acc_num=xavier1401195838

    Chicago Manual of Style (17th edition)