Parent’s stories of the lived experience of parenting a child with Cystic Fibrosis

Background: Cystic Fibrosis (CF) is a life-limiting chronic condition affecting over 9,000 people within the UK. Its treatment and life course has been found to render a significant burden on the individual, as well as the parents. To support parents of children with CF we need to talk to them and listen to their needs to better support them and improve their QOL; yet current studies infrequently explore parent’s experiences. Aims: to explore the experiences of parents of children with Cystic Fibrosis. Methods: A narrative approach was utilised using unstructured interviewing to allow a parent lead, in-depth interview to take place. Participants were recruited from the East of England and the Midlands to take part in the study. Findings: Two mothers were interviewed in their homes. The parents demonstrated the significant impact of CF, and highlighted a long adaption process that professionals play and large role within; and demonstrate that adaption does occur. Parents highlight the benefits of family-centred care and the importance of achieving normality for the parent and child; findings suggest however that this may not be fully achieved. Conclusions: Service providers must ensure that expert support for parents is provided. They must value the expertise of the parent and fully practice family-centred care. What is clear is that parents have a great ability to adapt and cope with demands and implications of CF