Children with chronic continence problems: the challenges for families

For families who are raising children with myelomeningocele, bowel and bladder incontinence presents unique challenges for everyday life. The Parenting and Childhood Chronicity model is used to describe the work of raising a child with a chronic condition in 6 areas, including medical care, adapted parenting, dealing with the systems, caring for siblings, maintaining relationships, and personal coping (keeping yourself going). This article provides an overview of the physiologic and developmental challenges inherent in this neural tube defect and illustrates the work that is involved in the child's care and the challenges of maintaining a balance in family life. Clinical implications are discussed, including the setting of appropriate expectations, providing parents with accurate information, ensuring that a focus on continence is not at the expense of other important aspects of the child's functioning, and supporting parents in their interaction with the school system. The medical team, consisting of nursing, urology, nephrology, and psychology working together, can be a strong support for families.