“when we started treatment yes, it was like a big whole day, I
was either preparing or giving a treatment, so there was nothing I could
do, no cleaning, no dinner, nothing. And it was like how, can I do this
like for ever and this was really hard. But later, I was little faster
and now it is like everything is getting better.” (mother 8)
Parents of children diagnosed with PCD changed their daily schedule to
accommodate the child’s daily PCD treatment regimen. Most parents
provided the child with 1 to 3 daily airway clearance (physiotherapy
treatment) sessions totalling 20 to 360 minutes each day. For most
parents it took 1 to 2 years to settle into a lifestyle that
accommodated the medical needs of their child. While some parents shared
the daily treatment burden, for most couples it was the mother who took
responsibility. Parents scheduled or planned each day to accommodate the
daily treatment or they developed a new daily routine. One mother
described:
“living with PCD it’s a lifestyle really, it’s something that we
fit it all into the daily routine.” (mother 1)
Parents described having to wake up earlier in the morning and return
from work or family excursions earlier in the evening to support their
child with the PCD treatment.