Learning Objective #1: Discuss areas of uncertainty experienced by adults with neural tube defects

Learning Objective #2: Identify anticipatory guidance for children with neural tube defects and their parents in planning for their adult years

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Much is known about neural tube defects (NTD) and the health care that is given to children with this condition. Less is known about this condition in adulthood. Through a descriptive, qualitative study of 16 Caucasian, 11 African-American, and 15 Mexican-American adults with NTDs, aged 20 to 75, information was learned that could be of use to parents and children with this condition as they age into adulthood. The purpose of this paper will be to explore developmental and health concerns for adults as described by this sample and the advice that younger individuals with NTDs and their families can take for their future life as an adult. A semi-structured interview guide in English and Spanish was used to obtain information on health status and secondary conditions, health care management, current level of functioning, sexuality, degree of independence, self-care, mobility, social activities and relationships, and cultural and religious influences. Three themes emerged from the data and included: uncertainty regarding the future, access to health care and information, and advocacy concerns. From these results, anticipatory guidance in each of these three areas will be discussed for children with NTDs and their families. It is important that nurses and other health care professionals begin to discuss and research the lifespan trajectory of chronic childhood conditions in order for persons with these conditions to live optimal lives.