TRANSITIONAL AND ADULT ISSUES FOR PERSONS WITH NTDS

描述(改编自调查人员摘要)：70%至80% 所有患有神经管缺陷(NTD)的人都将活到成年。那里有 对非专利药品对这些个体的影响进行了极少的研究，因为他们 从青春期到成年期的过渡以及在他们成年期间。的确有 没有关于患有NTDS的墨西哥裔美国成年人的研究，尽管这一人群 患NTDS的风险更高。科恩(1993)的诊断性闭合理论 不确定性的传播将被用作概念框架。目的 这项描述性的定性研究研究将回顾检查 向成人期的过渡，并进一步审查目前的发育和 卫生保健管理问题和未来计划以及15名高加索人和 15名患有NTDS的墨西哥裔美国成年人，年龄在20至40岁之间，他们的母亲(a 共60名受试者)。患有NTDS的成年人将完成一份半结构的 访谈、生活质量指数和贝克抑郁量表。这个 患有NTDS的墨西哥裔美国成年人和他们的母亲也将完成 西班牙裔二维文化适应量表。母亲们将完成一项 半结构化面试。对定性信息的分析将 遵循自然主义探究方法的指导方针。如果数据出借给 本身，科恩的不确定性类别将被用于编码结构， 但由于这项研究奠定了新的基础，编码类别将会出现 从数据来看。还将审查特定于文化的问题和关切。 这项研究的知识将有助于住院病人和社区的护士 倡导、教育和干预患有NTDS的成年人及其 为家庭提供帮助，并协助预防继发性并发症。

DESCRIPTION (As Adapted from the Investigator's Abstract): Seventy to 80% of all persons with neural tube defects (NTD) will live into adulthood. There has been minimal research on the effects of NTDs on these individuals as they transition from adolescence to adulthood and during their adult years. There is no research on Mexican-American adults with NTDs, although this population is at higher risk for NTDs. Cohen's (1993) theory of diagnostic closure and the spread of uncertainty will be used as the conceptual framework. The purpose of this descriptive, qualitative research study will be to retrospectively examine the transition to adulthood and further examine the current developmental and health care management issues and future plans and concerns of 15 Caucasian and 15 Mexican-American adults with NTDs, aged 20 to 40 years, and their mothers (a total of 60 subjects). The adults with NTDs will complete a semi-structured interview, the Quality of Life Index, and the Beck Depression Inventory. The Mexican-American adults with NTDs and their mothers will also complete the Bidimensional Acculturation Scale for Hispanics. The mothers will complete a semi-structured interview. The analysis of the qualitative information will follow the guidelines of the naturalistic inquiry approach. If the data lends itself, Cohen's uncertainty categories will be used in the coding structure, but since this study lays new groundwork, the coding categories will emerge from the data. Cultural-specific issues and concerns will also be examined. Knowledge from this study will assist nurses in inpatient and community settings to advocate, educate, and intervene with adults with NTDs and their families, as well as to assist in the prevention of secondary complications.