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Evaluation of a paediatric gluten-free food guide by children and youth with coeliac disease, their parents and health care professionals

Published online by Cambridge University Press:  23 July 2021

Diana R. Mager*
Affiliation:
Department of Agricultural, Food and Nutritional Science, University of Alberta, Edmonton, Alberta, Canada Department of Paediatrics, University of Alberta, Edmonton, Alberta, Canada
Samantha Cyrkot
Affiliation:
Department of Agricultural, Food and Nutritional Science, University of Alberta, Edmonton, Alberta, Canada
Christine Lirette
Affiliation:
Department of Agricultural, Food and Nutritional Science, University of Alberta, Edmonton, Alberta, Canada
Herbert Brill
Affiliation:
Division of Gastroenterology and Nutrition, McMaster Children’s Hospital, Hamilton, Ontario, Canada
Jenna Dowhaniuk
Affiliation:
Division of Gastroenterology and Nutrition, McMaster Children’s Hospital, Hamilton, Ontario, Canada
Heather Mileski
Affiliation:
Division of Gastroenterology and Nutrition, McMaster Children’s Hospital, Hamilton, Ontario, Canada
Carlota Basualdo-Hammond
Affiliation:
Department of Nutrition Services, Alberta Health Services, Edmonton, Alberta, Canada
Roseann Nasser
Affiliation:
Department of Nutrition and Food Services, Pasqua Hospital, Saskatchewan Health Authority, Regina, Saskatchewan, Canada
Esther Assor
Affiliation:
Department of Paediatrics, Division of Endocrinology, Hospital for Sick Children, Toronto, Ontario, Canada
Margaret Marcon
Affiliation:
Division of Gastroenterology, Hepatology and Nutrition, Hospital for Sick Children, Toronto, Ontario, Canada
Justine M. Turner
Affiliation:
Department of Paediatrics, University of Alberta, Edmonton, Alberta, Canada Division of Paediatric Gastroenterology and Nutrition, Stollery Children’s Hospital, Edmonton, Alberta, Canada
*
*Corresponding author: Diana R. Mager, email mager@ualberta.ca

Abstract

There are currently no universal evidence-based nutrition guidelines that address the gluten-free (GF) diet for children/youth (4–18 years). A GF food guide was created to help children/youth with coeliac disease (CD) and their families navigate the complexities of following a GF diet. Guide formation was based on pre-guide stakeholder consultations and an evaluation of nutrient intake and dietary patterns. The study objective was to conduct an evaluation on guide content, layout, feasibility and dissemination strategies from end-stakeholder users (children/youth with CD, parents/caregivers and health care professionals). This is a cross-sectional study using a multi-method approach of virtual focus groups and an online survey to conduct stakeholder evaluations. Stakeholders included children/youth (4–18 years), their parents/caregivers in the coeliac community (n 273) and health care professionals (n 80) with both paediatric and CD experience from across Canada. Thematic analysis was performed on focus group responses and open-ended survey questions until thematic saturation was achieved. χ2 and Fisher’s exact statistical analyses were performed on demographic and close-ended survey questions. Stakeholders positively perceived the guide for content, layout, feasibility, ethnicity and usability. Stakeholders found the material visually appealing and engaging with belief that it could effectively be used in multi-ethnic community and clinical-based settings. Guide revisions were made in response to stakeholder consultations to improve food selection (e.g. child-friendly foods), language (e.g. clarity) and layout (e.g. organisation). The evaluation by end-stakeholders provided practical and patient-focused feedback on the guide to enable successful uptake in community and clinical-based settings.

Type
Research Article
Copyright
© The Author(s), 2021. Published by Cambridge University Press on behalf of The Nutrition Society

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