Cheung Christina, Wirrell Elaine
Faculty of Medicine, Queen's University, Kingston, ON, Canada.
J Child Neurol. 2006 Mar;21(3):214-22. doi: 10.2310/7010.2006.00053.
Adolescent perception of physical and social impact of chronic illness was assessed to determine (1) if there is greater prejudice toward epilepsy than other chronic disease and (2) if adolescents with chronic disease have less prejudice toward similarly affected peers with all types of chronic disease or just their specific chronic disease. Cognitively normal teens aged 13 to 18 years without chronic disease (n = 41) and with epilepsy (n = 32), asthma (n = 38), diabetes (n = 21), and migraine (n = 17) were interviewed in the outpatient clinics of a tertiary care pediatric center regarding their perceptions of the physical and social impact of eight chronic diseases (epilepsy, asthma, diabetes, Down syndrome, arthritis, migraine, leukemia, human immunodeficiency virus [HIV] infection). Epilepsy was perceived to have a more adverse physical impact than all chronic illnesses except Down syndrome. The perception was that it more frequently caused mental handicap, injured the afflicted individual and bystanders, and led to death. Epilepsy was also perceived to have a more negative social impact, particularly on behavior, honesty, popularity, adeptness at sports, and fun. Significantly more adolescents expressed reluctance to befriend peers with epilepsy, both from their own and their perceived parental perspectives. Having a chronic disease did not generally alter the adolescents' perceptions of peers with chronic disease. However, cases with epilepsy ranked this disease to have less social impact than teens with other chronic diseases. In conclusion, adolescents consider epilepsy to have a greater physical and social impact than most chronic diseases. Educational efforts should focus on the "normality" of most persons with epilepsy and emphasize the low risk of injury when proper first aid is followed.
评估青少年对慢性病的身体和社会影响的认知,以确定:(1)与其他慢性病相比,对癫痫是否存在更大的偏见;(2)患有慢性病的青少年对患有各种慢性病的同龄人,还是仅对患有其特定慢性病的同龄人,偏见更少。在一家三级护理儿科中心的门诊,对41名无慢性病、年龄在13至18岁的认知正常青少年,以及32名患有癫痫、38名患有哮喘、21名患有糖尿病和17名患有偏头痛的青少年进行了访谈,询问他们对八种慢性病(癫痫、哮喘、糖尿病、唐氏综合征、关节炎、偏头痛、白血病、人类免疫缺陷病毒[HIV]感染)的身体和社会影响的看法。除唐氏综合征外,癫痫被认为比所有慢性病都有更不利的身体影响。人们认为它更常导致智力障碍、伤害患者和旁观者,并导致死亡。癫痫也被认为有更负面的社会影响,特别是对行为、诚实、受欢迎程度、运动能力和乐趣方面。从他们自己以及他们认为的父母的角度来看,明显更多的青少年表示不愿意与患有癫痫的同龄人交朋友。患有慢性病一般不会改变青少年对患有慢性病的同龄人的看法。然而,患有癫痫的青少年认为这种疾病的社会影响比患有其他慢性病的青少年要小。总之,青少年认为癫痫比大多数慢性病有更大的身体和社会影响。教育工作应侧重于大多数癫痫患者的“正常性”,并强调遵循正确急救措施时受伤风险较低。