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开发一个帮助特纳综合征患者及其家庭的项目。

Developing a program to assist Turner's syndrome patients and families.

作者信息

Mullins L L, Lynch J, Orten J, Youll L K

机构信息

Department of Psychiatry and Behavioral Sciences, University of Oklahoma Health Sciences Center.

出版信息

Soc Work Health Care. 1991;16(2):69-79. doi: 10.1300/j010v16n02_06.

Abstract

Turner's Syndrome [TS] is a chromosomal disorder that affects one in 2500 women. It results in an array of physical difficulties, including short stature, lack of secondary sexual development and cognitive problems. Little research exists to document the psychosocial problems and needs of individuals with TS and their families. The current literature and the results of a regionally based needs assessment are reviewed to guide program development, with emphasis on the emotional and informational needs of these families. Suggestions are provided for strategic early communication and information sharing, development of skill-specific support groups, family networks and family therapy.

摘要

特纳综合征(TS)是一种染色体疾病,每2500名女性中就有1人受其影响。它会导致一系列身体问题,包括身材矮小、缺乏第二性征发育以及认知问题。关于特纳综合征患者及其家庭的心理社会问题和需求的研究很少。本文回顾了当前文献以及一项基于地区的需求评估结果,以指导项目开发,重点关注这些家庭的情感和信息需求。文中还就早期战略沟通与信息共享、特定技能支持小组的发展、家庭网络和家庭治疗提出了建议。

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