Exploring information sharing with families making decisions about gastrostomy feeding for children with neurodisabilities

Abstract

Feeding difficulties are common in children with neurodisabilities. If children have problems safely swallowing adequate food or fluid, gastrostomy (GT) feeding via a tube through the abdominal wall may be offered to augment or replace oral feeding. Systematic reviews have indicated that the risks and benefits of the procedure in this patient group are unclear. Prior retrospective research has highlighted how for mothers, uncertainty about this procedure can result in decisional stress and conflict, leading to delays in GT placement. By contrast, high levels of maternal satisfaction with the GT tube have been identified once it has been placed. The perceptions and experiences of other stakeholders taking part in the decision-making process, most notably fathers, has not yet been explored. This study aimed to investigate GT decision-making experiences for families with children with neurodisabilities. The first arm of the study is retrospective and uses an Interpretative Description to explore the perspectives of 26 family members and seven healthcare professionals involved in making decisions about GT placement. This is reinforced by two short interviews with children with neurodisabilities who had the decision made about them. In the second arm of the project, a longitudinal study was completed with one family, including analysis of the clinical encounters where the family actively discuss GT placement with their clinical team. Four key themes have been identified: maternal embodiment, the pleasure and commensality of food and drink, feeding as care, and normalisation and stigma. Key differences in the views of mothers, fathers and other stakeholders emerged around these themes. This research also demonstrates how GT decision-making needs to be understood as a distributed process across time and place. Clinical encounters require delicate interactional work. They should provide the interactional space to allow stakeholders the opportunity to participate in the processes of information sharing, evaluation of risks and benefits, and decision-making around feeding method.