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慢性病对儿童的影响:兄弟姐妹的看法。

Impact of a chronic illness in childhood: siblings' perceptions.

作者信息

Derouin D, Jessee P O

出版信息

Issues Compr Pediatr Nurs. 1996 Apr-Jun;19(2):135-47. doi: 10.3109/01460869609038053.

Abstract

This project investigated siblings' perceptions of family disruption when a brother or sister had cystic fibrosis (CF) or asthma. Data were gathered by phone interviews and questionnaires. Phone interviews were conducted with siblings of chronically ill children and employed open-ended questions focusing on the impact of the illness on the sibling and the family unit. Along with the interview, siblings also completed a separate self-esteem measure. Assessments of family functioning and demographic variables were obtained through parental questionnaires. Only the sibling interview data are addressed in this article. Fifteen families from the two illness groups participated. There were 6 male and 9 female respondents, with a mean age of 10.1 years. The average age of the well sibling was slightly older than the average age of the chronically ill child. For siblings of both disease groups, positive outcomes included strengthening some family relationships, achieving more personal independence, and experiencing satisfaction in seeing improvement in the ill child. Negative outcomes included worrying about the brother's or sister's illness, being jealous of the attention paid to the ill child, and the restriction of family events. Appropriate family interventions are suggested, as well as feedback as to the efficacy of phone interviews with school-age children.

摘要

本项目调查了兄弟姐妹在其兄弟或姐妹患有囊性纤维化(CF)或哮喘时对家庭破裂的认知。数据通过电话访谈和问卷收集。对慢性病患儿的兄弟姐妹进行了电话访谈,并采用开放式问题,重点关注疾病对兄弟姐妹及家庭单元的影响。除访谈外,兄弟姐妹还完成了一项单独的自尊测量。通过家长问卷获得家庭功能和人口统计学变量的评估。本文仅讨论兄弟姐妹的访谈数据。来自两个疾病组的15个家庭参与其中。有6名男性和9名女性受访者,平均年龄为10.1岁。健康兄弟姐妹的平均年龄略高于慢性病患儿的平均年龄。对于两个疾病组的兄弟姐妹来说,积极的结果包括加强一些家庭关系、获得更多个人独立以及在看到患病孩子病情好转时感到满意。消极的结果包括担心兄弟或姐妹的疾病、嫉妒给予患病孩子的关注以及家庭活动受到限制。文中提出了适当的家庭干预措施,以及关于对学龄儿童进行电话访谈效果的反馈。

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