The role of the patient organization in socio-psychological adaptation of patients with celiac disease

Abstract

Celiac disease is a lifelong disease, associated with lifestyle changes. After the diagnosis was made, patients are faced with a number of tasks: organizing a food system for the patient and his family members at home, in kindergartens, schools, health camps, sanatoriums, hospitals, in the army, while traveling; selection of gluten-free medicines; organization of psychological assistance. Support in the social and psychological sphere of life is provided by patient organizations, that create systems for the comfort life of celiac patients. This review focuses on the role of such organizations in the socio- psychological adaptation of patients with celiac disease. The tasks, methods and projects of systemic educational work, information resources, methods of psychological support for patients are presented; product expertise capabilities, legislative aspects in the field of social and legal protection of the interests of persons with celiac disease and a violation of gluten tolerance, the possibilities of material support for patients in various regions of Russia are highlighted. The article drew attention to the success of patient organizations in improving the quality of life, and those who have difficulties both: the problems of labeling of gluten-free products, the complexity of catering in public restaurants and institutions. The system of activities and projects, developed by the St. Petersburg Society of Celiac Diseases “Emilia” and the National Association “Gluten Free Life” allows to overcome the difficulties, associated with adhering to a strict lifelong diet, improves gluten free food at home.