Abstract
BackgroundChildren undergoing bone marrow transplant (BMT) often become unable to eat and drink putting them at risk of malnutrition. Additionally, they must take many medicines for months post-BMT. Tube feeding becomes required by almost all children to meet these demands, with parents in charge of using them and administering the prescribed medications and enteral feeds. Two tubes are typically used: nasogastric or gastrostomy. At the UK centre where this study took place, parents are offered choice of these tubes. This qualitative study explored why parents chose the tube they did and compared their experiences of tube feeding.MethodsRecruitment occurred during pre-admission consultations with the BMT team. Parents took part in semi-structured interviews at two time points; on admission, to explore why they chose a nasogastric or gastrostomy tube, at 1-2 months post-discharge to explore their experience of using the tube. Interviews took place over 18 months, were recorded, transcribed and thematically analysed.ResultsSixteen parents whose child had a nasogastric tube, 17 a gastrostomy, were interviewed. Choice was experienced very differently with spectrums of difficulty and freedom. Some parents had complete freedom to choose whereas others were told which to have by clinicians. Many parents deferred to the expertise of clinicians whilst others felt they were the experts in their child. Parents valued being given the choice with an appreciation that one size does not fit all when it comes to tube feeding. Influential factors in decision making included length of time in use, the child’s age, activity, cosmetic differences, weighing up the risk of gastrostomy surgery, lay advice and prior experiences.ConclusionClinical teams can help parents navigate this complex decision-making process, weigh up their options and make a truly informed choice through collaborative discussions and provision of more detailed and balanced information.