McNelis Angela M, Buelow Janice, Myers Jennifer, Johnson Elizabeth Ann
Indiana University School of Nursing, Indianapolis, IN 46202, USA.
Clin Nurse Spec. 2007 Jul-Aug;21(4):195-202. doi: 10.1097/01.NUR.0000280488.33884.1d.
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.
A focus group methodology was used with 2 child groups and 2 parent groups.
Themes were independently identified by each investigator, who then met to discuss the themes until 100% agreement was reached.
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."
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.
患有癫痫常常会干扰儿童及其家庭的生活质量，但具体的担忧尚未得到探究。本研究的目的是深入探究癫痫患儿及其父母自我报告的担忧和需求。
采用焦点小组方法，涉及2个儿童组和2个父母组。
每位研究者独立确定主题，然后开会讨论这些主题，直至达成100%的共识。
儿童主题包括“以我的水平交流”和“感觉与他人不同”。父母主题包括“困难、挣扎和问题”、“对信息的需求”以及“恐惧和担忧”。
本研究结果表明，在诊断过程中需要关注评估信息和情感支持需求。持续评估也是必要的，因为儿童和父母在首次接触医疗保健专业人员之后仍有持续的需求。
