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青少年和成年囊性纤维化患者:当你依赖它时,如何离开家?

Adolescent and adult cystic fibrosis patients: how to leave home when you are depending on it?

作者信息

Lampo A, Dab I, Malfroot A

机构信息

Academic Hospital, Free University of Brussel, Belgium.

出版信息

Acta Univ Carol Med (Praha). 1990;36(1-4):228-30.

PMID:2130705
Abstract

Over a period of 1 year, 11 on 23 CF adolescent or adult patients were referred to the childpsychiatrist (CP) for psychological problems and a notice of total dependency of their parents. The approach of the CP was systematic and family oriented. We noticed that on 11 patients only 6 came to the appointment and only 6 on 10 parents accepted to contact the CP. Of the 6 studied cases 4 showed severe psychopathology (1 sexual abuse, 1 physical and emotional abuse, 2 extreme over-protection), 2 showed psychological problems due to their restricted life conditions. On top of this, all 6 met enormous financial and social problems to gain more independency. The dependency of CF adolescent and adult patients is a family problem and a combination of relational, emotional, but also practical and financial problems and thus not exclusively due to their illness. As the prognosis of cystic fibrosis (CF) improved significantly, every aspect of this disease also became an "adult" problem. Independency is only one aspect and can not be considered on its own. We have to look at all technical, psychological and social adjustment problems those patients and their parents have to cope with.

摘要

在1年的时间里,23名囊性纤维化(CF)青少年或成年患者中有11名因心理问题及其对父母的完全依赖而被转介给儿童精神科医生(CP)。CP的治疗方法是系统且以家庭为导向的。我们注意到,在这11名患者中,只有6人前来预约,而在10名家长中只有6人同意与CP联系。在研究的6个病例中,4例表现出严重的精神病理学问题(1例性虐待、1例身体和情感虐待、2例极端过度保护),2例因生活条件受限而出现心理问题。除此之外,所有6例在获得更多独立性方面都遇到了巨大的经济和社会问题。CF青少年和成年患者的依赖是一个家庭问题,是关系、情感以及实际和经济问题的综合,因此并非仅仅是由他们的疾病导致的。随着囊性纤维化(CF)的预后显著改善,这种疾病的各个方面也都变成了“成人”问题。独立性只是其中一个方面,不能孤立地看待。我们必须关注这些患者及其父母必须应对的所有技术、心理和社会适应问题。

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