Abstract
Background
Complex feeding difficulties requiring enteral (tube) feeding affect everyone around the child. Parents experience additional stress and are at risk of social isolation. This study investigated the strategies families develop and use to adjust and adapt to enteral feeding so they were not just surviving, but thriving as a family.
Methods
Twenty parents whose children had been or continued to be enterally fed were interviewed, four of them twice as their experience of enteral feeding progressed. Learning theory was used to conceptualise findings in terms of changing use of tools that mediated parents’ response to feeding‐related challenges.
Results
Parents encountered dilemmas relating to enteral feeding and: maintaining participation in everyday activities; managing responses to the use of tubes for feeding; and doing what feels right for their child. They used four kinds of mediating tools to overcome these: memory aids and readiness tools; metaphors and narratives; repurposed everyday objects; and personalised routines and materialities.
Conclusions
This novel account of tool use to resolve dilemmas provides an empirically and theoretically grounded basis for supporting parents to thrive despite the challenges of enteral feeding. Specifically, it can guide information given to help parents anticipate and cope with dilemmas arising from enteral feeding.