• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

对囊性纤维化患儿家庭周末聚会的支持。

The supporting weekend's meeting of families with CF children.

作者信息

Vyhnálek M, Vávrová V

机构信息

Laborator sociální a preventiviní pediatrie ILF, Praha, Czechoslovakia.

出版信息

Acta Univ Carol Med (Praha). 1990;36(1-4):240-3.

PMID:2130709
Abstract

Since 1977 3 day-weekend's working meetings have been repeatedly organized for the families with CF children. Several times 97 families comparising 187 parents and 182 children--(of these 101 child patients aged 4-17 years)--took part in them. For one meeting 11 complete families are invited. The working weekend's meeting of complete families (WWM) connects in itself the advantages of parental, thematically oriented discussion group and the principles of psychotherapy by means of modelling. For establishing the program of parents' groups, first of all the level of knowledge on CF was tested by the questionnaires. Other questionnaires contained both the expectation of parents and their evaluation of the psychotherapy. The aim of WWM is: 1. to improve the knowledge of parents about disease, 2. to correct wrong ideas on the disease, 3. to learn both parents the therapeutic rehabilitation, 4. to enable an open discussion between both parents and between parents and health personnel, 5. improving family functions by means of stimulations for free time of the family and 6. to catalyze the reproductive decision of the family if the parents are in fertile age--to inspire the planning of a new family on the basis of the method of prenatal diagnosis. CF is chronic, lethal, genetically conditioned disease. The complex therapy of CF patients enables to prolong their life often up to the adulthood. At the same time the possibility of prenatal diagnosis in CF decreases the risk of birth of another affected child in the family.(ABSTRACT TRUNCATED AT 250 WORDS)

摘要

自1977年以来,针对患有囊性纤维化(CF)儿童的家庭,多次组织了为期三天的周末工作会议。有几次,97个家庭(包括187名家长和182名儿童,其中101名儿童患者年龄在4至17岁之间)参加了会议。每次会议邀请11个完整家庭。完整家庭的周末工作会议(WWM)本身结合了以主题为导向的家长讨论小组的优点以及通过示范进行心理治疗的原则。为了制定家长小组的计划,首先通过问卷测试家长对CF的了解程度。其他问卷既包含家长的期望,也包含他们对心理治疗的评价。WWM的目标是:1. 提高家长对疾病的了解;2. 纠正对该疾病的错误观念;3. 让家长双方都学习治疗性康复知识;4. 使家长之间以及家长与医护人员之间能够进行开放的讨论;5. 通过刺激家庭的休闲时间来改善家庭功能;6. 如果家长处于生育年龄,促使家庭做出生育决策——以产前诊断方法为基础,激发新家庭的规划。CF是一种慢性、致命的遗传性疾病。对CF患者的综合治疗常常能使他们活到成年。同时,CF的产前诊断可能性降低了家庭中再出生一名患病儿童的风险。(摘要截取自250词)

相似文献

1
The supporting weekend's meeting of families with CF children.对囊性纤维化患儿家庭周末聚会的支持。
Acta Univ Carol Med (Praha). 1990;36(1-4):240-3.
2
Family pediatrics: report of the Task Force on the Family.家庭儿科学:家庭问题特别工作组报告
Pediatrics. 2003 Jun;111(6 Pt 2):1541-71.
3
Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers.在孩子被诊断为残疾前后满足家长的需求:对一项由关键工作者提供信息、支持和联络的新项目的评估。
Pediatrics. 2004 Oct;114(4):e477-82. doi: 10.1542/peds.2004-0240.
4
Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.一项以家庭为导向的康复计划对慢性病患儿家长生活质量的影响。
Klin Padiatr. 2009 Jul-Aug;221(4):241-6. doi: 10.1055/s-0029-1216364. Epub 2009 Jul 23.
5
Psychosocial typology of the CF family system.囊性纤维化家庭系统的心理社会类型学
Acta Univ Carol Med (Praha). 1990;36(1-4):235-9.
6
What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?家长对于即将进入成人健康服务的囊性纤维化青少年的关护和支持的认知性质是什么?
Health Soc Care Community. 2010 Jan;18(1):21-9. doi: 10.1111/j.1365-2524.2009.00871.x. Epub 2009 Jul 22.
7
Disease knowledge and reproductive attitudes of parents having a child with cystic fibrosis.患有囊性纤维化患儿的父母的疾病知识和生殖态度。
Ann Genet. 1994;37(2):89-92.
8
Family planning decisions after the birth of a cystic fibrosis child. The impact of prenatal diagnosis.囊性纤维化患儿出生后的计划生育决策。产前诊断的影响。
Scand J Gastroenterol Suppl. 1988;143:38-46.
9
Parent interview findings regarding the impact of cystic fibrosis on families.家长访谈中关于囊性纤维化对家庭影响的调查结果。
J Dev Behav Pediatr. 1985 Jun;6(3):122-7.
10
[Respiratory physio-kinesitherapy in cystic fibrosis: the parents' viewpoint].
Pediatr Med Chir. 1988;10 Suppl 1:1-14.