Abstract
Celiac Disease (CD) is a chronic autoimmune disease triggered by dietary gluten. Gluten avoidance, which is the only available treatment for CD, could impact on quality of life of children with CD. We present the results of a qualitative study on the emotional impact of gluten free diet (GFD) on the everyday life of children affected with CD. We investigated 76 celiac patients aged 2–18 years (average age: 9.5 years). By using the Critical Incident Technique (CIT), we defined emotions related to difficulties and awkward situations experienced by the patients. Written answers to open-ended questions from either children (older than 8 years) and parents (children younger than 8 years) were analyzed qualitatively. We found 80 dilemmas experienced in three different arenas (food situations at school, meals at home, meals outside) and characterized lived experiences of children with CD in everyday life (specific emotions, difficulties in relationships and in management of daily life). Children with CD experience strong emotions related to the GFD, permeating several aspects of everyday life. These dilemmas may be missed by a conventional, questionnaire-based approach to the psycho-social consequences of CD treatment.
Highlights
Celiac Disease (CD) is a permanent autoimmune disorder triggered by dietary gluten in genetically predisposed individuals
Given the interesting results reported in adults with CD by using the Critical Incident Technique (CIT) approach, in the present study we aimed to investigate the impact of CD and the gluten free diet (GFD) on the Health-Related QOL (HRQOL) and the social and emotional world of children with CD, using this qualitative method of research
Participants were leaved alone during the test and the interviewer came back at the end of the test; at this time answers were read aloud and sometimes the interviewer asked follow-up questions, to help the youngest patients if their answers were not precise, not tying themselves to a specific incident, or to better understand the single situation or experience, or to know other experiences or dilemmas perceived by the patients, all related to CD and the GFD
Summary
Celiac Disease (CD) is a permanent autoimmune disorder triggered by dietary gluten in genetically predisposed individuals. The only treatment that is currently available for CD is the lifelong avoidance of gluten from the diet (so called gluten-free diet = GFD) This treatment is effective but limits the patients’ food choice and influences the patient’s lifestyle and quality of life (QOL) [1]. A study on the long-term health and QOL after mass-screening for childhood disease reported a similar QOL after 10 years follow-up between children on GFD and controls [5]. Given the interesting results reported in adults with CD by using the CIT approach, in the present study we aimed to investigate the impact of CD and the GFD on the HRQOL and the social and emotional world of children with CD, using this qualitative method of research
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