Knowledge and Fears of Parents of Children Diagnosed with Epilepsy.

PURPOSE: Describe the knowledge and fears of parents of children diagnosed with epilepsy in the hospital and clinic settings. DESIGN AND METHODS: Descriptive, comparative study design. Knowledge was measured with the 16-item Epilepsy Knowledge Scale and epilepsy-related fears was operationalized by the Epilepsy-related Fears in Parents Questionnaire (EFPQ) addressing short and long-term fears. The sample included 40 parents of children diagnosed with epilepsy who were cared for on a pediatric ortho/neuro hospital unit (N = 27) or pediatric neurology clinic (N = 13). RESULTS: Parents were middle aged adults (mean 39 years), mostly mothers with 80% college education. Their children ranged in ages from less than one to 18 years of age (Mean = 8.5) across a variety of ethnic backgrounds who were most often diagnosed with epilepsy at a young age (<1 year to 3 years). Percentage of correct answers ranged from 31% (5 correct) to 100% (16 correct); mean 12 correct or 75%. Subjects/parents were afraid! They had many fears: Short-term (possible range 8-40) with responses ranging from 9 to 40 (mean 28); Future/long-term (possible range 9-45) ranging from 9 to 45 (mean 32). They were afraid when their child is in the care of others - something might happen, and their child could die during a seizure. There was no statistically significant difference in responses between hospital or clinic parents. DISCUSSION: Parents who participated in this study were knowledgeable but fearful with immediate and long term concerns. PRACTICE IMPLICATIONS: Nurses need to provide verbal and written education materials. Address triggers. Talk to parents about their fears related to epilepsy. Identify parental support. Validate parents' skills in knowing what to do when their child has a seizure.

Patient perspective: what do palliative care patients think about their care?

Developing accountable and appropriate care services depends on listening to the views of service users. This nurse-led, qualitative study explored 10 palliative care patients' views of their care in hospital and at home using non-standard interviews. A total of 10 categories emerged, some of which are not reflected well in extant literature. However, some smaller studies show comparable results, which confirms the validity of these findings. These findings can inform the planning of services and are repeatable and generalizable. Implications for nursing and planning for palliative care are discussed.