TRANSITIONAL AND ADULT ISSUES FOR PERSONS WITH NTDS

描述（根据研究者摘要改编）：70% - 80%

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.