Concerns and needs of children with epilepsy and their parents

Angela M. McNelis, Janice Buelow, Jennifer Myers, Elizabeth Ann Johnson

Research output: Contribution to journalArticle

47 Citations (Scopus)

Abstract

PURPOSE: 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. METHOD: A focus group methodology was used with 2 child groups and 2 parent groups. DATA ANALYSIS: 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." CONCLUSION: 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.

Original languageEnglish (US)
Pages (from-to)195-202
Number of pages8
JournalClinical Nurse Specialist
Volume21
Issue number4
DOIs
StatePublished - Jul 2007

Fingerprint

Epilepsy
Parents
Focus Groups
Fear
Emotions
Quality of Life
Research Personnel
Delivery of Health Care

Keywords

  • Focus groups
  • Qualitative research
  • Seizures

ASJC Scopus subject areas

  • Advanced and Specialized Nursing
  • Assessment and Diagnosis
  • Leadership and Management
  • LPN and LVN

Cite this

Concerns and needs of children with epilepsy and their parents. / McNelis, Angela M.; Buelow, Janice; Myers, Jennifer; Johnson, Elizabeth Ann.

In: Clinical Nurse Specialist, Vol. 21, No. 4, 07.2007, p. 195-202.

Research output: Contribution to journalArticle

McNelis, Angela M. ; Buelow, Janice ; Myers, Jennifer ; Johnson, Elizabeth Ann. / Concerns and needs of children with epilepsy and their parents. In: Clinical Nurse Specialist. 2007 ; Vol. 21, No. 4. pp. 195-202.
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