Development of a model for self-care support of diet and the gut in the routine care of children with cystic fibrosis

Background: Key UK health policy advocates provision of self-care support (SCS) for children with long-term conditions such as cystic fibrosis (CF). However, there is insufficient evidence regarding what SCS should consist of and how it can be delivered as part of routine care. This gap between policy and practice has resulted in a lack of support for children with CF, in gradually learning how to look after their diet and gut, both key components of their CF care. Aim: To develop a model (conceptual framework) that encapsulates how SCS of diet and the gut as a complex intervention, could theoretically work in the routine care of pre-adolescent children with CF. Methods: A three-phase multi-method pragmatic study was conducted, guided by the development phase of the Medical Research Council framework and complemented by the Behaviour Change Wheel. Phase one was an evidence synthesis of 27 studies using an integrative review methodology. In phase two, a qualitative descriptive study, the perspectives of 58 key stakeholders (preadolescent children with CF, parents and children’s CF dietitians) were explored in semi-structured interviews, and analysed using Framework. In phase three, findings from phases one and two were integrated and further developed through modelling, and a draft model evaluated. Findings: A model for a theory- and evidence-based digital behavioural intervention is presented, that accounts for implementation of the intervention in the context of routine care and is based on achieving stakeholder-valued outcomes. The intervention would aim to gradually build children’s knowledge, understanding, skills and confidence, maintain their motivation, and provide access to peer support and peer-to-peer learning. Conclusions: The findings inform recommendations for practice and the model informs future co-production and testing of a prototype of the SCS intervention.