Transitional and health issues of adults with neural tube defects.
Transitional and health issues of adults with neural tube defects.
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患有神经管缺陷的成年人的过渡和健康问题。
DOI：
10.1111/j.1547-5069.2006.00079.x
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发表时间：
2006
期刊：
影响因子：
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通讯作者：
Faux,SandraA
中科院分区：
文献类型：
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作者：
Nehring,WendyM;Faux,SandraA
目的：调查 20 至 75 岁患有神经管缺陷 (NTD) 的白种人、非裔美国人和墨西哥裔美国人成年人过去、现在和未来的发展和医疗保健问题及担忧。设计：自然主义调查。方法：采用半结构化访谈从 16 名白种人、11 名非裔美国人和 15 名墨西哥裔美国人成年人中获取信息。结果：分析中确定的三个主题是对未来的不确定性、获得医疗保健的机会和结论：记录慢性儿童疾病（如被忽视的热带疾病）的成人轨迹非常重要。尽管人们对儿童时期的此类状况了解很多，但有关整个生命周期健康和发育问题的更多知识有助于提供适当的预期指导和医疗保健。
Purpose: To examine past, current, and future developmental and health care issues and concerns of Caucasian, African American, and Mexican American adults, aged 20 to 75 years, with neural tube defects (NTDs).Design: Naturalistic inquiry.Methods: A semi‐structured interview was used to obtain information from 16 Caucasian, 11 African American, and 15 Mexican American adults.Findings: Three themes identified in the analysis were uncertainty about the future, access to health care and information, and advocacy.Conclusions: Documenting the adult trajectories of chronic childhood conditions, such as NTDs, is important. Although much is known about such conditions in childhood, additional knowledge about health and developmental concerns across the lifespan enhances provision of appropriate anticipatory guidance and health care.