Edinburgh Napier University

  Although chest physiotherapy is central to the management of cystic fibrosis many report problems with adherence. Research in other long-term conditions suggests that non-adherence may be exacerbated as the child grows older and self-care responsibilities are transferred to the young person. We explored the nature and variation in roles of family members, how responsibility was transferred from the parent/family to the child, and what factors aided or hindered this process.

We conducted in-depth interviews with 32 children with a diagnosis of cystic fibrosis aged 7–17 years, and with 31 parents attending cystic fibrosis clinics in two Scottish regions. Family responsibilities were primarily focused on mothers. The level and nature of involvement varied along a continuum that separated into six parental and five child roles and changed over time. However, this movement was frequently reversed during periods of illness or mistrust. The day to day experience of such a transfer was not straightforward, linear or unproblematic for any of the family members. Three factors were identified as assisting the transfer of responsibility: parents’ perceptions of the benefits of transferring responsibility, children's perceptions of the benefits, and the available physical, social and psychological resources to support such a transfer.

The principles and lessons from “concordance” (a therapeutic alliance based on a negotiation between equals and which may lead to agreement on management or agreement to differ) may provide a foundation for newly developing relationships between parents and their children emerging into adulthood. Further research is required to develop more specifically the content and structure of required support, its effectiveness in achieving more concordant relationships, and the resulting impact on adherence, perceived health and well-being from the perspective of the young person and parent.