Areas of Responsibility in the Health Care of Multiply Handicapped Children

Abstract

To clarify the roles of primary and consultant physicians in the health care of children with chronic disabilities, 44 mothers of children with spina bifida were interviewed to determine whether a primary physician, a specialist or another source had taken the responsibility for providing the following areas of health care: evaluation and treatment of the chronic disease, advice, future planning, genetic counseling, coordination, emotional support, education, acute illness care, and well-child care. Specialists provided evaluation and treatment of the chronic disease for all children, while about three fourths of the children received acute illness and well-child care from their primary physicians. The patterns of responsibility for the other areas of health care were less clearly defined. Primary physicians were perceived as contributing little to the rehabilitative and coordinative care for these children; most mothers felt there was no physician responsible for providing overall direction to their children's care. To provide complete and effective health care to children with chronic disabilities, parents and physicians must clearly understand who is to be responsible for both the specific health services as well as the overall direction of care. A primary physician, a specialty clinic or a "coordinating pediatrician" might effectively play this role.