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Keywords:

  • adults with neural tube defects;
  • uncertainty;
  • access to health care;
  • access to information;
  • advocacy

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.