Transitional and Health Issues of Adults With Neural Tube Defects

Authors

  • Wendy M. Nehring,

    1. Wendy M. Nehring, RN, PhD, FAAN, Alpha Tau, Associate Dean for Academic Affairs, Director of the Graduate Program, and Associate Professor, Rutgers, The State University of New Jersey, Newark, NJ; Sandra A. Faux, RN, PhD, Gamma Phi, Associate Professor, Rush University, College of Nursing, Chicago, IL. This study was funded by the National Institute of Nursing Research, 1 R15 NR05214-01 and a Summer Research Fellowship from Southern Illinois University Edwardsville. Special thanks are extended to Joy Ito, RN, BS; Patricia A. Braun, RN, MS, CPNP; Nilda Peragallo, PhD, RN, FAAN; and Anne Cohen, MA, who served as consultants on this project. Correspondence to Dr. Nehring, College of Nursing, Rutgers, The State University of New Jersey, 180 University Ave., Ackerson Hall, Rm. 102A, Newark, NJ 07102. E-mail: nehring@rutgers.edu
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  • Sandra A. Faux

    1. Wendy M. Nehring, RN, PhD, FAAN, Alpha Tau, Associate Dean for Academic Affairs, Director of the Graduate Program, and Associate Professor, Rutgers, The State University of New Jersey, Newark, NJ; Sandra A. Faux, RN, PhD, Gamma Phi, Associate Professor, Rush University, College of Nursing, Chicago, IL. This study was funded by the National Institute of Nursing Research, 1 R15 NR05214-01 and a Summer Research Fellowship from Southern Illinois University Edwardsville. Special thanks are extended to Joy Ito, RN, BS; Patricia A. Braun, RN, MS, CPNP; Nilda Peragallo, PhD, RN, FAAN; and Anne Cohen, MA, who served as consultants on this project. Correspondence to Dr. Nehring, College of Nursing, Rutgers, The State University of New Jersey, 180 University Ave., Ackerson Hall, Rm. 102A, Newark, NJ 07102. E-mail: nehring@rutgers.edu
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Abstract

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.

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