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The everyday life of adolescent coeliacs: issues of importance for compliance with the gluten-free diet

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Abstract:

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 

Adolescents 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.

Keywords: adolescent; celiac disease; focus groups; gluten-free diet; patient compliance

Document Type: Research Article

DOI: http://dx.doi.org/10.1111/j.1365-277X.2008.00867.x

Affiliations: 1: Department of Food and Nutrition 2: Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences, Umeå University, Umeå, Sweden

Publication date: August 1, 2008

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