Abstract
PurposeTo explore children's experiences of mealtimes when living with a gastrostomy tube. Design and methodsThe 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. ResultsFour 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. ConclusionsRegardless 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 implicationsHealthcare 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.
Highlights
Gastrostomy tube (G-tube) feeding is an alternative mode of nutrition used for children with long-term health conditions who are unable to cover their nutritional requirements orally
Children's perspective representing their own experiences of living with a G-tube is lacking in previous research, which instead focuses on a “child perspective” developed by adults (Nilsson et al, 2015)
The findings reveal a complex picture where the children experienced nutrition, whether through the G-tube or orally, as necessary for a healthy body but not sufficient for a positive mealtime experience
Summary
Gastrostomy tube (G-tube) feeding is an alternative mode of nutrition used for children with long-term health conditions who are unable to cover their nutritional requirements orally. Research examining paediatric G-tube feeding has typically studied complications (Goldberg et al, 2010; Pars and Çavuşoğlu, 2019) and growth (Duncan et al, 2018; Ricciuto et al, 2015), suggesting it to be a safe procedure associated with improved nutrition and growth outcomes, despite known complications. In a study exploring how G-tube feeding in adult patients affects daily life, the participants primarily reported undesirable effects, including leakage, disturbed sleep and negative attitudes of others (Brotherton et al, 2006). Children's perspective representing their own experiences of living with a G-tube is lacking in previous research, which instead focuses on a “child perspective” developed by adults (Nilsson et al, 2015)
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