Purpose: To explore children's experiences of mealtimes when living with a gastrostomy tube.Design and methods: The study used a qualitative descriptive design framed within ecocultural theory. Seven children, three girls and four boys, aged 6–12 years with long-term health conditions and a gastrostomy tube participated in individual interviews. The interviews were qualitatively analysed by means of systematic text condensation.

Results: Four main categories comprised the findings of the children's mealtimes experiences: “Stable in form, open to variation,” “An individual, and a shared activity,” “An object that needs to be dealt with” and “A part of me.” A complex picture emerged, where the children experienced nutrition, whether through the gastrostomy tube or orally, as necessary for a healthy body, although this did not suffice to make the mealtime experience positive.

Conclusions: Regardless of the children's amount of oral intake, everyday mealtimes were valued as opportunities for social interaction and experienced as a predictable, routine activity no different from the mealtimes of other families. The accounts illustrated that in many situations the children knew precisely what they needed and did not need, what they liked and disliked and why.

Practice implications: Healthcare professionals should take children's knowledge into consideration to a greater extent when planning follow-up and intervention. The study illuminates that children can take an active part in their healthcare when offered flexible and carefully designed communication material, even in the presence of communicative and/or intellectual disability. © 2020 The Author(s).