Supporting children with CF in self-care of their diet and gut
Research type
Research Study
Full title
An exploratory study to advance self-care support by dietitians in the routine care of children with Cystic Fibrosis (CF)
IRAS ID
276804
Contact name
Laurie Cave
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 11 months, 16 days
Research summary
Title: An exploratory study to advance self-care support (SCS) by dietitians in the routine care of children with Cystic Fibrosis (CF).
This study will explore how dietitians could support primary school children with CF to develop their knowledge, skills and confidence in looking after their diet and gut (digestive system). They may then be better prepared to self-care and stay in control of this part of their CF during adolescence. This is important as it may contribute to them living better, and for longer, as adults.
The research as a whole is in three phases. This application refers to phase two.
The study design is qualitative. It will explore in detail what SCS could consist of and how it could be provided as part of routine care. Key people will be interviewed: children with CF, their parents/carers and children’s CF dietitians. This is to gain an understanding of SCS based on the perspectives of those who would be receiving and providing SCS.
Who can take part?
• Children with CF aged 6-11 years, who use pancreatic enzyme replacement therapy and attend one of three specialist CF centres: Alder Hey, Birmingham or Royal Brompton, and
• Their parent/carer
• A dietitian at each of the children’s specialist CF centres in England.What will taking part involve?
A single interview with researcher Laurie Cave. Interviews will be face-to-face (in person or via video call) for children and parents/carers, or by telephone for parents/carers and dietitians. For children, there will be a range of games and activities to play/do if they wish whilst talking. Interviews will last approx. 30-40 minutes and will be audio-recorded, then written out, with all personal information removed, and looked at in detail. Those interviewed will be able to receive a summary of the study findings.The study will run from approx. September 2020 to August 2021.
Lay summary of study results: This study had three phases. In phase one, the findings of 29 studies were brought together to understand what self-care support (SCS) of diet and the gut for children with long-term conditions could consist of, and how it could be delivered in routine care. In phase two, 20 children with cystic fibrosis (CF) aged 7-11 years, 20 parents and 18 children's CF dietitians were interviewed to understand what currently happens in routine dietetic care, what SCS needs to be, and what could help or hinder its delivery. In phase three, findings from phases one and two were brought together to make a model of how SCS could work and the model checked with key people. The model suggests SCS of diet and the gut could be:
- an online programme for children aged 6-11 years used in clinics and at home
- through play, children gradually build their knowledge and skills, and by practicing what they learn, build their confidence e.g., in choosing foods that are right for them and in taking charge of their enzymes
- lots of different activities to try, that include learning together with, and from, other children with CF
- provides prompts to help develop habits early on that will help children as they grow.
The results of the study can be used in practice and the model taken forward to develop a programme for testing in routine care.REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
20/YH/0170
Date of REC Opinion
29 Jun 2020
REC opinion
Favourable Opinion