“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.