TRANSITIONAL AND ADULT ISSUES FOR PERSONS WITH NTDS

描述（改编自研究者摘要）：70%至80%的 所有患有神经管缺陷的人都将活到成年。一直 关于NTD对这些人的影响的研究很少，因为他们 从青春期到成年期的过渡期和成年期。有 没有对患有NTD的墨西哥裔美国成年人的研究，尽管这一人群 NTD的风险更高。Cohen（1993）的诊断闭合理论和 不确定性的扩散将被用作概念框架。的目的 这项描述性、定性的研究将回顾性地检查 过渡到成年，并进一步审查目前的发展和 医疗保健管理问题和未来的计划和关注的15个高加索和 15名患有NTD的墨西哥裔美国成年人，年龄在20至40岁之间，及其母亲（a 共60人）。NTD的成年人将完成一个半结构化的 访谈，生活质量指数和贝克抑郁量表。的 患有NTD的墨西哥裔美国成年人及其母亲也将完成 西班牙裔二维文化适应量表。母亲们将完成一个 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。如果数据显示 本身，科恩的不确定性类别将用于编码结构， 但由于这项研究奠定了新的基础， 从数据中。还将审查文化方面的具体问题和关切。 从这项研究的知识将有助于护士在住院和社区 倡导，教育和干预NTD成年人及其 家庭，以及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.