Abstracts

RATIONALE: Epilepsy is a chronic condition with an associated stigma and often leaves families whose child is newly diagnosed, with a sense of feeling out of control and unaware of information and supports available to them. To address these issues an Epilepsy Education Package was created. This package was designed using the Evaluating Printed Education Materials (EPEM) Model (Bernier, 1993) to guide its development. This descriptive study was designed to invite parents to evaluate the usefulness of the Epilepsy Education Package they received when their child was diagnosed with epilepsy. There were no evaluation tools looking at the usefulness of printed educational materials for families so an evaluation tool was created by adapting the Client Satisfaction Questionnaire (CSQ) developed by Daniel Larsen et al (1979).
METHODS: The population of interest was families from the inpatient neurosciences unit and outpatient neurology clinic at British Columbia[ssquote]s Children[ssquote]s Hospital as well as from the Epilepsy Society of British Columbia who received the Epilepsy Education Package when their child was diagnosed with epilepsy. Evaluation tools were mailed to 93 families. The evaluation tool contains 39 questions in which 13 utilize a Likert scale, 15 closed-ended questions, and 11 open-ended questions as well as a demographic tool containing 10 questions. Telephone follow-up and interviews were done with 48 of these families.
Analysis of the data was done descriptively. The percentages for each Likert-scaled response and closed-ended question were calculated. The open-ended questions and telephone data were analyzed using content analysis. Patterns or common themes were identified and responses categorized into these themes.
RESULTS: Data was obtained from 45 of the 93 families. Of that number 35 (78%) found it useful. The package was read an average of 3 times. Results found the resource package informed the families of safety issues and allowed them to have these discussions with others. It also informed them about the medications their child was on and the common side effects associated with those medications. Of the respondents 68% felt they received enough information; 77% felt the package helped them inform others about their child[ssquote]s diagnosis; 59% felt it helped in their interactions with health professionals and teachers; 60% felt it helped clarify other[ssquote]s misconceptions about epilepsy; 76% felt the information in the package was new; and 95% felt it was relevant and up-to-date.
CONCLUSIONS: The study findings indicate that most parents read and found the Epilepsy Education Package useful. Recommendations were given as to how the package could be improved. The recommendations included adding extra suggestions for resources and supports for families, such as: information for siblings, websites, and an annotated bibliography or reference list for extra reading. Implications for clinical practice and education as well as research is included.
As a result of this study the importance of written educational materials for families whose child has epilepsy will be clear as well the importance of evaluating such material.