Social aspects of adherence to gluten-free diet for children and adolescents with celiac disease

Abstract

The purpose of the study: analysis of medical and social problems and factors affecting the availability and compliance of a gluten-free diet, based on a survey of parents of children with celiac disease living in southern Russia. Purpose of the Study: Analysis of the medical and social problems and factors affecting the availability and adherence to the gluten-free diet based on the results of the questioning survey of the parents of children with celiac disease that are residents of the south of Russia. Children Characteristics and Study Methods. The study include 200 families that bring up the children with the celiac disease at the ages from 10 months to 18 years. The patients included 116 (58%) girls and 84 (42%) boys. The medical and social issues were studied using the developed questionnaire consisting of the open questions and intended as self-administered by the patient parents. Results. 87% of the families noted the significant difficulties in adhering to the diet, 75% were forced to refuse to travel with children, 56% of the surveyed were unable to visit the public spaces, restaurants, and 90% indicated the impossibility and difficulties in purchase of the gluten-free products. The strict adherence to the diet at school age is much worse. The main reasons for the deliberate non- adherence to the gluten-free diet are the high cost of food, lack of funds to purchase it. The patient families spend RUB 8,000- 9,000 per month in average to purchase the gluten-free products. There is a great demand of patients for the imported products with the relevant quality marks. The psychological symptoms were noted in the patients with celiac disease in response to the introduction of the gluten-free diet, manifested by the depression, aggression, irritability, high level of the anxiety. Conclusion. The main difficulties faced by the families that bring up the children and adolescents with the celiac disease include the social and psychological maladjustment of the patients, reduced finances, search and purchase of the high-quality gluten-free products and the necessity to adapt the child and family members to the dietary habits.