Mothers’ experiences of nasogastric tube feeding for young children with Down syndrome

Objectives: Evidence suggests that nasogastric (NG) feeding tubes are frequently used for infants with Down syndrome. Despite caregivers being an essential resource, relatively little is known regarding their perspectives of NG tube feeding and its impact for children with Down syndrome. Therefore, this study aimed to expand on the research to understand perspectives of mothers of young children with Down syndrome to inform how best to support them. Methods: Fourteen mothers of children with Down syndrome (mean age = 39.43 years, SD = 5.96 years) took part in virtual semi-structured interviews to explore how NG feeding tubes are being used for young children with Down syndrome, including exploring decision-making processes, exit-planning, and the impact on oral feeding, eating, and drinking. Results: Reflexive thematic analysis resulted in three core themes. Mothers had clear feeding goals which were often required to be put aside during periods of acute illness. Where mothers were not able to meet their breastfeeding goals, they experienced feelings of grief. Once NG tubes were in place, mothers struggled with a lack of support and exit-planning, meaning that their child was dependent on the NG tube far longer than initially anticipated, with mothers reporting significant psychosocial and emotional challenges. Conclusions: Specialist practical support for breast feeding (including for infants that are fed via NG tube), that is targeted to children with Down syndrome is crucial to parents. Structured NG tube exit planning is essential in reducing parental anxieties and preventing feeding tube dependency.