Vyhnálek M, Vávrová V
Laborator sociální a preventiviní pediatrie ILF, Praha, Czechoslovakia.
Acta Univ Carol Med (Praha). 1990;36(1-4):240-3.
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)
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)