DECISION MAKING AROUND GASTROSTOMY TUBE INSERTION IN CHILDREN WITH NEUROLOGIC DISABILITY: A SYSTEMATIC REVIEW

Purpose: Gastrostomy tube insertion is recommended for nutritional rehabilitation in children with neurologic disability who are undernourished or who cannot safely feed by mouth.  Little work has been done to improve the decision making process around this intervention for parents.  It is first necessary to understand the experiences, beliefs, and preferences of parents around this intervention.

Method: We conducted a systematic review of qualitative studies that explored the experiences of parents with children who have neurologic disability and who are gastrostomy tube fed.  We searched 5 electronic databases from inception to June 2008. Two authors independently selected articles, extracted data, and then met to construct concepts and themes relevant to decision making. 

Result: Of 125 citations identified, eleven studies that reported experiences relevant to decision making were selected.  The decision making process was characterized by decisional conflict.  Factors important to the construct of decisional conflict were categorized under three major themes: values, context, and process. The meaning and value of feeding by mouth and, in contrast, with a gastrostomy tube was the dominant theme that led to internal distress for parents in decision making. Feeding by mouth was seen as an enjoyable activity, an important social process, but also a struggle. Gastrostomy represented a loss of normalcy, a sign of disability, and a disruption of maternal nurturing and bonding.  Context (child, parent, and family characteristics) and process (information, support, and health care providers) modified and shaped the internal struggle over values and decisional conflict. Tensions on values that emerged were also due to competing perspectives: the biomedical vs. social perspective and the child health vs. parental care giving perspective.  

Conclusion: Decision making for parents around gastrostomy tube insertion in children with neurologic disability is often difficult and filled with conflict.  We identified several sources of decisional conflict that will help inform structured process improvement and the development of a decision aid.