“….maybe they try to understand our position, but do they
really get it? No, absolutely not! I don’t think, that’s a slight on
anybody else, that’s just unless you’re living it, I guess you can’t
really understand it. No more that I could understand somebody else’s
position with perhaps a different condition.” (mother 3)
Parent’s coping strategies
There was wide variation in the way parents coped with the challenges of
caring for a child with PCD. We have classified the different styles of
coping into support seeking, problem-focused, emotional-focused, and
cognitive-adaptive coping strategies. Some parents discussed how support
from partner, family, healthcare providers, online PCD support groups
had enabled them to cope when child was hospitalized or unwell. Some
parents sought medical information to explain why their child was unwell
while other parents needed to talk to somebody who was willing to just
listen.
Several parents dealt with the challenges of raising a child with PCD
pragmatically, by taking things day-by-day, and focusing on the problems
at hand. They became knowledgeable about PCD and sometimes learnt new
skills to take control, as highlighted by the following mother: