Table 5

Feedback delivered in diaries (both paper and web-app)

Probiotic/placeboFeedback
Probiotic‘X found it difficult to drink the sample as the smell is quite off-putting, we did get it down but I’m sure if it had a better smell the task would be easier’
‘From an adults’ point of view, all the chemo and extra meds the kids have to then take another product that has such a bad smell and taste is hard for them’
Probiotic‘Y stopped eating-not sure if its due to feeling sick or not eating because of mucositis’
‘I don’t think she had the trial medicine today as she had to stop any oral intake (bowels slowing down)’
‘Trial med not given as no oral/NG tube allowed’
Placebo‘Dose taken an hour later as Z had yoghurt with food at the time dose was due’
‘Being a baby, it is difficult to say how sickly Z feels so it’s all a best guess’
‘Would be helpful to have reminders’
Placebo‘20 mL is too much to put down an nasgastric tube in a small child’
‘Not eaten for a while’
‘Again 20 mL is too much volume, it makes him retch as you put it down’
  • NG, nasogastric.