C Olsson1, A Hörnell, A Ivarsson, Y M Sydner. 1. Department of Food and Nutrition, Epidemiology and Public Health Sciences, Umeå University, Umeå, Sweden. cecilia.olsson@kost.umu.se
Abstract
BACKGROUND: Noncompliance with the gluten-free diet is often reported among adolescents with coeliac disease. However, knowledge is limited regarding their own perspectives and experiences of managing the disease and the prescription of a gluten-free diet. The aim of this study was to explore how adolescents with coeliac disease perceive and manage their everyday lives in relation to a gluten-free diet. METHODS: In total, 47 adolescents with coeliac disease, divided into 10 focus groups, were interviewed. In the qualitative analysis, themes emerged to illustrate and explain the adolescents' own perspectives on life with a gluten-free diet. RESULTS: The probability of compliance with the gluten-free diet was comprised by insufficient knowledge of significant others, problems with the availability and sensory acceptance of gluten-free food, insufficient social support and their perceived dietary deviance. Three different approaches to the gluten-free diet emerged: compliers, occasional noncompliers, and noncompliers. Each approach, as a coping strategy, was rational in the sense that it represented the adolescents' differing views of everyday life with coeliac disease and a prescription of a gluten-free diet. CONCLUSIONS: dolescents with coeliac disease experience various dilemmas related to the gluten-free diet. The study demonstrated unmet needs and implies empowerment strategies for optimum clinical outcomes.
BACKGROUND: Noncompliance with the gluten-free diet is often reported among adolescents with coeliac disease. However, knowledge is limited regarding their own perspectives and experiences of managing the disease and the prescription of a gluten-free diet. The aim of this study was to explore how adolescents with coeliac disease perceive and manage their everyday lives in relation to a gluten-free diet. METHODS: In total, 47 adolescents with coeliac disease, divided into 10 focus groups, were interviewed. In the qualitative analysis, themes emerged to illustrate and explain the adolescents' own perspectives on life with a gluten-free diet. RESULTS: The probability of compliance with the gluten-free diet was comprised by insufficient knowledge of significant others, problems with the availability and sensory acceptance of gluten-free food, insufficient social support and their perceived dietary deviance. Three different approaches to the gluten-free diet emerged: compliers, occasional noncompliers, and noncompliers. Each approach, as a coping strategy, was rational in the sense that it represented the adolescents' differing views of everyday life with coeliac disease and a prescription of a gluten-free diet. CONCLUSIONS: dolescents with coeliac disease experience various dilemmas related to the gluten-free diet. The study demonstrated unmet needs and implies empowerment strategies for optimum clinical outcomes.