There is policy impetus for provision of self-care support (SCS) for children with long-term conditions (LTCs). However, it is not clear what SCS should consist of and how it can be delivered in routine care. This review aimed to synthesise the literature, specifically on SCS of diet and the gut as these components are essential for optimal growth and development and enhanced quality of life. Using an integrative review methodology, studies conducted between January 1990 and July 2020 were systematically identified and methodological quality assessed using the Mixed Methods Appraisal Tool. Twenty-five studies were included. SCS of diet and the gut consisted of support in developing and applying specific knowledge and skills and practical help with incorporating the demands of self-care into everyday life. Key requisites for models of SCS in the context of delivery and uptake in routine care were starting early, keeping it going, being flexible and choosing appropriate outcomes. This review contributes new understanding on the provision of SCS of diet and the gut for school-age children with LTCs, including identification of gaps in the literature and further research needs.
Background
Little is known about adults’ experience of living with cystic fibrosis (CF) specifically in relation to the gut. However, their unique perspectives may be meaningful to children with CF and inform the understanding and practice of dietitians. The present study aimed to explore adults’ lived experience of the CF gut and how they learnt to manage the gut as they were growing up.
Methods
Semi‐structured interviews were conducted with adult inpatients (n = 10). Interviews were audio‐recorded, transcribed verbatim and accounts analysed using interpretative phenomenological analysis.
Results
Three super‐ordinate themes were identified: taking Creon, the learning process and this much I (now) know. Participants accounts of how CF affects the gut predominantly focused on taking Creon (pancreatin, Mylan). Various strategies were employed for coping with peer responses to taking Creon at school. Several participants reached adulthood before they understood and/or accepted that taking Creon consistently needed to be normal for them. Knowledge and understanding developed over time, with ‘CF experience’ and was shaped by family, CF care teams and other children with CF. All had unmet information needs when growing up. Having key explanations earlier, to make connections between eating, taking Creon, gaining weight and growth, did or would have helped most participants. Participants urged children to be assertive, ask questions and not only be involved in managing their diet and gut, but also begin to take control of this aspect of their CF.
Conclusions
Supporting development of knowledge, skills and confidence to manage diet and the gut needs to be integral to care throughout childhood.
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