直立不耐受患儿家长对疾病认识和需求的调查研究  

Perceptions and needs of the parents in children with orthostatic intolerance

作　　者：杨园园[1] 陈建军[2] 洪黛玲[1] 杜军保[2] 

机构地区：[1]北京大学护理学院 [2]北京大学第一医院儿科,北京100034

出　　处：《临床儿科杂志》2006年第5期369-372,共4页Journal of Clinical Pediatrics

基　　金：国家十五攻关项目(2004BA720A10);首都医学发展基金资助项目(2002.3037)

摘　　要：目的了解直立不耐受患儿家长对疾病的认识和需求，旨在有针对性地为患儿及其家长提供健康教育和情感支持。方法对2005年10月～2006年2月在北京大学第一医院儿科33例确诊为直立不耐受患儿的家长进行问卷调查，并对其中8位家长进行深度访谈。结果54．5％的家长对疾病有一些了解，45．5％的家长对疾病一无所知；居住城市或城镇的家长中对疾病有所了解的人数所占比例高于农村地区（P〈0．05）；家长对疾病了解程度与其文化程度呈正相关（r=0．438，P〈0．05）。半数以上的家长认为疾病对患儿的心理行为、智力和生长发育造成不良影响，特别是血管迷走性晕厥患儿的家长认为疾病给患儿带来严重影响；大多数家长希望了解疾病相关知识（n=29），最希望获得的服务方式是门诊咨询（札=29）。结论目前我国直立不耐受患儿及其家长的健康需求未得到满足，应加强对疾病相关知识的普及和宣传，并为患儿及其家长进行健康教育和情感支持。Objective To investigate the perceptions and needs for relevant knowledge of the parents in children with orthostatic intolerance. Methods A questionnaire survey was conducted in thirty-three parents whose children were diagnosed as orthostatic intolerance in Peking University First Hospital from October, 2005 to February, 2006. Among them, 8 parents were surveyed by in-depth interview. Results 54.5% of the parents knew only a little about the disease and 45.5% knew nothing about it . The degree of perception of the disease positively correlated with the parents＇ educational status （r = 0.438, P d0.05） . The proportion of parents who understood the disease in city or town was higher than that in the countryside. More than half of the parents considered that the disease did harm to their children＇s health, especially to those children with vasovagal syncope （VVS）. Most of the parents wished to obtain the relevant knowledge about the disease （n = 29）. And consultation as out-patients was the most promising way that they wanted（n = 29）. Conclusions The desire to obtain the knowledge about the disease for the parents in the children withrprthostatic intolerance has not been met. We should publicize and popularize the knowledge about orthostatic intolerance and provide health education to the parents.

关 键 词：直立不耐受 儿童 家长 健康教育 

分 类 号：R473.72[医药卫生—护理学]