Concerns and needs of children with epilepsy and their parents.
OBJECTIVE
Having epilepsy often interferes with a child's and his or her family's quality of life, but specific concerns have not been explored. The purpose of the study was to explore in-depth the self-reported concerns and needs of children with epilepsy and their parents.


METHODS
A focus group methodology was used with 2 child groups and 2 parent groups.


METHODS
Themes were independently identified by each investigator, who then met to discuss the themes until 100% agreement was reached.


RESULTS
Child themes included "talking at my level" and "feeling different from others." Parent themes included "difficulties, struggles and problems," "need for information," and "fears and concerns."


CONCLUSIONS
Findings from this study suggest that attention needs to be directed to assessing informational and emotional support needs during the diagnostic process. Ongoing assessment is also necessary because children and parents have continuing needs beyond the initial encounter with healthcare professionals.
McNelis
Angela M
AM
Indiana University School of Nursing, Indianapolis, IN 46202, USA. ammcneli@iupui.edu
Buelow
Janice
J
Myers
Jennifer
J
Johnson
Elizabeth Ann
EA
D000223:Adaptation, Psychological; D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D004827:Epilepsy / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D005239:Fear; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D020380:Needs Assessment; D009730:Nursing Assessment; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology*; D010353:Patient Education as Topic; D000297:Psychology, Adolescent; D002666:Psychology, Child; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D012649:Self Concept; D012944:Social Support; D011795:Surveys and Questionnaires