Needs of Parents of Children With Spina Bifida

Abstract

Spina bifida (SB) is a birth defect involving the neural tube of the spine. The severity of the condition depends on the extent of the defect. The most severe cases of SB are debilitating and can significantly affect the quality of life of babies born with the defect.

Complications of SB can include mobility issues, orthopedic abnormalities, elimination impairments, infections, cognitive delays, and frequent hospitalizations, and these can span the lifetime of the child. The complications and needs associated with SB become very specific as the child reaches adulthood. According to the Centers for Disease Control and Prevention, approximately one in every 2,758 babies born annually in the United States are diagnosed with SB. Learning that a child will be born with a birth defect can be devastating for parents. Several decisions need to be made at birth and as the child grows. Many parents facing such news are overwhelmed and experience a range of emotions. The needs of parents caring for children with SB will vary based on their understanding of the disease process, ability to access resources, availability of a support system, and the capacity to cope with the challenges that arise when caring for a child born with this condition. Nurses must be diligent in exploring the needs of this parent population. This article is intended to raise awareness among nurses regarding parental needs so that they can support and assist parents in developing more effective ways to navigate through their journey.