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摘要唇腭裂是一种先天性口腔颜面部畸形，在中国每800个新生儿中就有一个唇裂或腭裂或两者兼有的新生患儿，且其发病率农村多于城市，山区多于平原。目前国内的唇腭裂救助计划多局限于手术治疗和贫困家庭资助，帮助唇腭裂患者及其家庭面对手术之外的各种困境是社会保障及医疗卫生服务系统中的一个缺失。
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本论文是基于“重生行动”医务社工实践经历进行的研究，采用定量和定性结合的研究方式，探讨唇腭裂患儿家长的教养行为的特点与改变因素的情况，从而了解患儿家长的心理状态与教养方式，对症下药地提出适当的措施和建议，希望能够对拓展中国内地公益医疗服务的发展思路和丰富医务社工实践与理论发展起到一定的推动作用。7161
关键字 唇腭裂 教养行为 医务社工
毕 业 论 文 外 文 摘 要
Title A Research of Parents’ Parenting Behavior
Whose Baby Has Cleft Lip and Palate
——A Case Study of “New Life Plan”
Abstract
Cleft lip and palate is a congenital oral facial deformity. In China, there will be one baby with lip or cleft palate or both in every 800 newborns, and the incidence of rural area is more than urban area, mountainous area is more than plain. Nowadays, many cleft lip and palate rescue plan is restricted to surgical treatment and poor family support, to help cleft lip and palate patients and the families to face difficult situations is few. So this is a missing of the social health system in China.
This article is a study conducted by medical social worker practice based on the "New Life Plan". The research method is combining the quantitative and qualitative methods to explore the characteristics and influencing factors of the parents’ parenting behavior whose baby has cleft lip and palate and all of these parents took part in the group work service. The goal is to find the parents’ psychological status and parenting behavior style, and to propose appropriate proposals to expand the practice and theoretical development of the Chinese mainland public medical services, and to help the development of medical social work practice and theory.
Keywords cleft lip and palate parenting behavior medical social work
目 次
1引言1
1.1 研究背景 1
1.2 研究目的与意义 2
2 文献综述3
2.1 国外唇腭裂多学科发展历史3
2.2中国唇腭裂治疗现状与问题3
2.3 唇腭裂患儿及家长干预措施4
2.4 文献总结与评价5
3 研究框架与研究方法6
3.1研究框架6
3.2概念界定6
3.3研究方法9
4 唇腭裂患儿家长教养行为的统计分析 11
4.1 家庭基本情况分析 11
4.2 教养行为特点分析 15
4.3 教养行为改变状况与影响因素分析 19
4.4 家长教养行为总结分析 23
5 对策与建议 24
5.1 加强唇腭裂知识宣传与医疗资源链接 24
5.2 发展医务社会工作，重视社会心理康复问题 25
5.3 院内活动与院外活动并举，文持服务成效26
5.4 建立专业序列治疗团队，发展多学科合作治疗经验26
结论 27
致谢 29
参考文献 30
附录1 唇腭裂患儿家长教养行为调查问卷（前测） 32
附录2 唇腭裂患儿家长教养行为调查问卷（后测） 34
附录3 唇腭裂患儿家长教养行为访谈提纲（一个月后） 37