Creative methods to explore children’s experiences of gastrostomy and nasogastric tube feeding during allogeneic bone marrow transplant

Abstract

Purpose Children undergoing bone marrow transplant experience severe gastrointestinal toxicity. Most become unable to eat, drink and take medications orally putting them at risk of malnutrition and clinical complications. To meet these demands most children require a feeding tube. This study explored children’s experiences of having a nasogastric or gastrostomy tube. Methods During this qualitative component in a mixed methods study, children completed scrapbooks as a creative method which acted as stimuli during two interviews: on admission for transplant and 1-2 months post-discharge. Parents helped their child during interviews where needed. Interviews were thematically analyzed. Results Six children (aged 5-11) who had a nasogastric tube, three a gastrostomy were interviewed. Five themes are presented. Either tube was uncomfortable at first and required adjustments to daily living, but children adapted quickly. Children wanted choice of tubes and liked being involved in decision-making. They felt both tubes were an asset, particularly to administer medications. Conclusions Multidisciplinary team support was crucial to the acceptance of either feeding tube. Even though tube feeding can seem a burden, children were appreciative of its importance to receive medicines and nutrition and recommended either tube to other children going through transplant. Having a choice of tubes was important as they appreciated one option might not suit all. Ensuring the child’s voice is heard through research is paramount to providing optimal healthcare but can be challenging in practice. Building rapport with families and support from a multidisciplinary team were essential in enabling children to share their experiences.