Abstracts

Psychoeducational interventions are important to promote children[apos]s mental health and condition self-management. Past research supports that attitudes are linked to adjustment and that more fears and concerns are associated with more negative attitudes. Frightening misconceptions, stigma, and shame that are commonly associated with epilepsy serve to exacerbate the concerns and fears of children with epilepsy. The purpose of this study was to describe findings from focus groups related to the concerns and needs of children with epilepsy and their parents. During inquiry, emphasis was placed on concerns and needs of children and their families immediately following the first seizure, as well as ongoing concerns and needs, that would have facilitated their living well with epilepsy. Sample: Two adult and two child focus groups were conducted. Participants in the adult groups were parents of children who currently have seizures and adults who had childhood onset seizures (n = 7 and 8, respectively). Participants in the child groups were children with seizures (n = 6 and 5, respectively). The children and adults had mild to severe seizure conditions. Most children were well controlled on monotherapy; however, one child was not able to go to school because of his condition. Two adults were currently unemployed because of their uncontrolled seizures. The verbatim transcriptions were treated as a database. Data were analyzed by two investigators to identify themes. Each investigator independently identified the themes and listed the statements that supported that theme. The investigators then met to discuss each theme and supporting statements and 100% agreement was reached. Four themes with subthemes evolved from the parent data: Difficulties/Struggles/Problems (Navigating the health care system, Being an advocate, Trajectory of disorder and what to expect from health care professionals, Family role changes); Helpful at the beginning (Time to process, Access to doctors and nurses); Helpful now (Information: building on existing knowledge, Support); and Fears, Needs and Concerns (Interference with growth and development, Prognosis, Unpredictability/uncertainty). Two themes evolved from the child data: Talking at my level and Feeling different than others. Findings from this study provide direction for health care professionals working with children and their families. It is evident that much attention needs to be directed to assessing informational and emotional support needs during the diagnostic process. It appears equally important that ongoing assessment is necessary as chidlren and parents have continuing needs beyond the initial encounter. Future research is needed to develop educational interventions that address these concerns and needs for both children and their parents. (Supported by Center for Enhancing Quality of Life in Chronic Illness, Indiana University School of Nursing, Indianapolis, IN, 46202.)