Maddison, J, Taylor, J, O’Neill, M et al. (6 more authors) (2021) Outcomes for gastrostomy-fed children and their parents: qualitative findings from the ‘Your Tube’ study. Developmental Medicine & Child Neurology, 63 (9). pp. 1099-1106. ISSN 0012-1622
Abstract
Aim
To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food).
Method
Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2–18y) represented included those on formula (n=11), blended-food (n=7), and mixed (n=2) diets. All had been tube-fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented.
Results
Participants identified a range of children’s outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube-fed. Time, sleep, and emotional health were regarded as most salient to understanding parents’ gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health.
Interpretation
Findings indicate a number of refinements to, and allow further specification of, the current ‘initial’ core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed.
Metadata
Item Type: | Article |
---|---|
Authors/Creators: |
|
Copyright, Publisher and Additional Information: | © 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
Dates: |
|
Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Environment (Leeds) > School of Food Science and Nutrition (Leeds) > FSN Nutrition and Public Health (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 18 Aug 2021 08:17 |
Last Modified: | 25 Jun 2023 22:44 |
Status: | Published |
Publisher: | Wiley |
Identification Number: | 10.1111/dmcn.14868 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:177198 |