Diana R Mager ^1 2, Samantha Cyrkot ¹, Christine Lirette ¹, Herbert Brill ³, Jenna Dowhaniuk ³, Heather Mileski ³, Carlota Basualdo-Hammond ⁴, Roseann Nasser ⁵, Esther Assor ⁶, Margaret Marcon ⁷, Justine M Turner ^2 8

Author information

• ¹Department of Agricultural, Food and Nutritional Science, University of Alberta, Edmonton, Alberta, Canada.
• ²Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
• ³Division of Gastroenterology and Nutrition, McMaster Children's Hospital, Hamilton, Ontario, Canada.
• ⁴Department of Nutrition Services, Alberta Health Services, Edmonton, Alberta, Canada.
• ⁵Department of Nutrition and Food Services, Pasqua Hospital, Saskatchewan Health Authority, Regina, Saskatchewan, Canada.
• ⁶Department of Pediatrics, Division of Endocrinology, Hospital for Sick Children, Toronto, Ontario, Canada.
• ⁷Division of Gastroenterology, Hepatology and Nutrition, Hospital for Sick Children, Toronto, Ontario, Canada.
• ⁸Division of Pediatric Gastroenterology and Nutrition, Stollery Children's Hospital, Edmonton, Alberta, Canada.

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 celiac 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, 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 celiac community (n=273) and health care professionals (n=80) with both pediatric and CD experience from across Canada. Thematic analysis was performed on focus group responses and open-ended survey questions until thematic saturation was achieved. Chi-square 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. organization). The evaluation by end-stakeholders provided practical and patient-focused feedback on the guide to ensure that uptake is successful in community and clinical-based settings.