Decision-Making Around Gastrostomy-Feeding in Children With Neurologic Disabilities

OBJECTIVE: The objective of this study was to understand the decision-making experiences, perspectives, and beliefs of parents of children with a neurologic disability around gastrostomy tube-feeding.

DESIGN AND METHODS: We conducted a systematic review of qualitative studies to explore the experiences of parents of children with a neurologic disability around gastrostomy-feeding. We searched 5 electronic databases from inception to July 2010. Two authors independently selected articles and extracted data. Concepts and themes relevant to decision-making were constructed by using thematic analysis.

RESULTS: Eleven studies were selected in which experiences relevant to decision-making were reported. The decision-making process was characterized by decisional conflict. Concepts important to understanding conflict were categorized under 3 themes: values; context; and process. The value and meaning of feeding by mouth and, in contrast, with a gastrostomy tube was the dominant theme that led to internal distress for parents in decision. Feeding by mouth was seen as an enjoyable activity, an important social process, but also a struggle. Gastrostomy-feeding represented a loss of normality, a sign of disability, and a disruption of maternal nurturing and bonding. Context (child and family characteristics) and process (information sharing and support) modified the decision-making experience.

CONCLUSIONS: Values associated with gastrostomy-feeding and feeding by mouth, the context of child and family, and the process of decision-making facilitated by the health care system shape parental experiences and decisional conflict. This framework will help guide interventions, such as patient decision aids, that are aimed at improving parental decision-making.