58 What do children think of tube feeding during bone marrow transplant?. (23rd February 2023)

• Record Type: Journal Article
• Authors: Evans, James; Green, Dan; O'Connor, Graeme; Lanigan, Julie; Gibson, Faith
• Is Part Of: Archives of disease in childhood. Volume 108(2023)Supplement 1
• Page Start: A22
• Page End: A22
• Publication Date: 2023-02-23
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2023-gosh.58
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Background: Children undergoing bone marrow transplant (BMT) experience severe gastrointestinal toxicity. Most are unable to eat and drink putting them at risk of malnutrition. Additionally, they must take Herculean amounts of medication. To meet these demands, almost all children require a feeding tube. Two are typically used: nasogastric or gastrostomy. This qualitative study sought to gather children's perspectives on having either of these tubes. Methods: This study took place at a single UK centre over 18 months. Children able to talk about their tube were interviewed twice using creative methods. On admission, children were asked to draw a picture of themselves with their tube and say what they thought about it. Throughout admission children were offered a scrapbook to note anything they were feeling about their tube. This was used during their second interview once home. The lead researcher conducted all interviews and met families weekly throughout admission to build rapport. Interviews were transcribed and thematically analysed. Results: Six children (all boys) who had a nasogastric, and three (two boys, one girl), a gastrostomy, were interviewed. Parents were present during interviews and helped their child express their thoughts, where needed. Both feeding tubes emerged as an asset, particularly to administer medications, which all the children disliked taking orally. Comfort was important and a primary preference for wanting a gastrostomy over nasogastric tube. Nasogastric tubes were initially uncomfortable, but children quickly got used to them. Conclusion: Ensuring the child's voice is heard through research is paramount to providing optimal healthcare but is often difficult in practice. Children in this study had good and bad days where they were, or were not, willing to talk about their tube. Building rapport was key to making the interviews work, as well as the help of nurses and play specialists through a multidisciplinary approach.