“I’m actually qualified now, so I trained to do home IVs, so I
can actually administer once they have a PICC line fitted and the
consultant decides they’re ok to be in my care at home. I actually bring
them home and I do the IV myself because again it’s given us the ability
to back together as a family and I think that’s the biggest care –
sometimes not being able to be together as a family. “ (mother 3)
Some parents tried to forget their worries and supressed negative
emotions that surfaced due to the challenges of raising a child with
PCD, for example by crying, exercising, keeping busy, thinking positive
thoughts, having fun and laughing a lot. Some found themselves taking
prescribed mental health medication, whereas other parents positively
re-assessed the situation so it no longer induced negative emotional
responses through techniques such as praying, not thinking about PCD,
wishing for the miracle of a cure, or knowing that today is a bad day
but hoping that tomorrow might be a good day. The most popular form of
adaptive cognitive coping was the parent comparing their situation with
somebody who was worse off. As this father described: