“….it has to be timed very well and done in a specific
order….we can’t just do things spontaneously, you know like a
family with children with, who don’t have the condition, you know if
they want to change it up at the last minute, they can do that, whereas
we couldn’t, if we went out for a certain period time for example, I
couldn’t just say, yeah let’s just stay it’s fine we’ll just stay later,
because it might be that I don’t have a certain medication on me”
(mother 3)
Parents generally prioritised treatment over any other activity. At this
young age the child needed parental supervision to adhere to the daily
treatment. The child didn’t always sit still for treatment and adherence
could be challenging for parents. Some parents used a role model (older
sibling, parent) to convince their children to do daily treatment. Some
parents explained to their child that the treatment will keep the germs
out and will make them feel better. For most parents repeated reminders,
chasing, struggles, and restraining were commonplace. Other parents did
not make a big fuss but handled it matter of fact as this father
explains.