“I hate it, it makes me cry every time. Because it just takes me back to when she was little when the first time we went into hospital and we were in there for 3 weeks. And it felt like we were never going to get out.” (mother 11)
Most couples had to adjust work commitments once they started caring for a child with PCD. One of the partners usually stopped employment, started working from home, became self-employed, minimalized work hours, and/or took a less demanding vocational role. The other parent was no longer able to make overtime and needed to take holidays or unpaid leave to accompany the child to medical appointments. Losing this additional income financially affected most families living with a young child diagnosed with PCD. The couple felt that one of them needed to have the flexibility to attend to the child’s daily and emergency health needs. The following mother explained why she started working part-time: