Living with cystic fibrosis: an exploration of the impact of beliefs on emotional coping and mtivation to adhere to treatment regimes among parents of children with cystic fibrosis

Objective: To explore the impact of beliefs on emotional coping and motivation to implement treatment regimes among parents of children with cystic fibrosis in Scotland, with a view to enabling health professionals support parents to cope emotionally and practically manage (with their children) arduous treatment regimes.Methods: The study used a qualitative design. Thirty-two children were purposively sampled from a cohort of over 100 children attending CF clinics in 2 regions of Scotland. The children and their parents/guardians were interviewed in-depth. The interview transcripts were analysed using Framework analysis facilitated by Nvivo software.Results: The results showed a complex relationship between beliefs, emotional coping and motivation to implement regimes. Beliefs about maintaining family values and identity, promoting 'normalness', 'acceptance', and having social support influenced emotional well-being and motivated parents to implement regimes. Beliefs about 'healthiness' promoted emotional well-being of parents and children but often undermined the child's motivation to fully implement the regime. Beliefs about illness, hospitalization, and responsibility challenged emotional coping, but strengthened parental resolve to carry out the regime. Beliefs about value conflicts and non-acceptance undermined both emotional coping and adherence.Conclusions: Health professionals may be able to increase parents' motivation to implement treatment regimes by: illustrating how the treatment regime can support their efforts to maintain family values, promote 'normalness' and be concordant with their sense of self-identity; exploring with parents ways of developing a social support network; assisting parents in 'accepting' CF