“….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: