Protective Care: Mothering a Child Dependent on Parenteral Nutrition
Home care of technology-dependent infants and children has become an accepted and expected consequence of higher survival rates among critically ill newborns and children who develop chronic illnesses. One of the high-tech modalities which foster dependence of these infants and children is parenteral nutrition. Parenteral nutrition, also called total parenteral nutrition (TPN), supplies life-sustaining nutrients through a central venous catheter and requires the use of machinery to pump this fluid directly into the bloodstream. Due to the tremendous cost of prolonged hospitalization for these children, and the deleterious effects to the child, home care is considered an obvious and viable alternative. It is the mother who feels the impact of care. The purpose of this study was to examine the role of mothering a child dependent on parenteral nutrition. Nineteen mothers ranging in age from 19 to 54 years were asked to respond to open-ended questions. The resulting transcriptions were analyzed using constant comparative methodology to formulate a grounded theory. Protective Care emerged as the basic social process, which characterizes the ways these mothers safeguard the lives of the children in their care. Six categories explaining the antecedents, strategies and consequences of Protective Care were found. These are: (a) gaining control, (b) watching over, (c) challenging the system, (d) promoting normalcy, (e) putting life in perspective and (f) celebrating the positive. These mothers sought to gain control of the situation, by learning and organizing the child's care. Their lives became consumed with the care of the child. They fought for reimbursement and issues related to home health care and schooling. Despite the challenges presented in the technological role they must assume in their mothering role, these mothers sought to promote normalcy in the child. Putting life in perspective allowed these mothers to maintain this intense role. Finally, they celebrated the positive aspects this child had brought to their lives. Further research is needed in this population to refine the theory and to examine cultural differences in the role. Instrument construction using reliable indicators could be developed to facilitate intervention studies.
children & youth, Chronic illnesses, home care, motherhood, newborn, nursing, parenteral nutrition, technology-dependent infants and children, women
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