Acceptability Analysis, Cultural Aspects and PersonalImpact of Diagnosis

• Autores: Eduardo Cueto Rúa, Luciana Guzmán, Cecilia Zubiri, Gabriela Inés Nanfito, Inés Urrutia, Leopoldo Mancinelli
• Localización: Celiac Disease and Non-Celiac Gluten Sensitvity / coord. por Amado Salvador Peña; Luis Rodrigo (ed. lit.), 2014, ISBN 978-84-942118-2-9, págs. 407-434
• Idioma: inglés
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• Resumen

  • The authors have performed 1500 surveys on the subject of acceptability of the celiac conditon,based on a questonnaire on the frequency of various claims by the celiac community. Thequestonnaire design resulted from previous meetngs in which the authors partcipated as guestexperts. The authors intended to characterize the subjectve reactons of the atendants to saidmeetngs. With that in mind, an investgaton was made on the age, gender, educatonal level,number of celiac relatves, tme and degree of adherence to the gluten-free diet, clinical featuresat the beginning of treatment, what issues patents fnd to be troublesome in every-day life, theirwishes when confronted with this peculiar conditon, their fantasies and their realistcexpectatons. It was found that most of the partcipants were female and that educatonal level has a positveimpact regarding a complete adherence to the diet. The number of persons with CD in the samefamily conspires against diet adherence and the most important social issue was not havingrestaurants with a gluten-free menu. It was also discovered that the atendants’ hoped-for soluton was a cure and that their realistcexpectaton was to have safe, palatable and afordable food throughout the whole country aswell as a law that took notce of their conditon. When the 1306 surveys on the Impact ofDiagnosis were analyzed, it was found that the exact words used by the physician and thepatent's level of educaton do not play a key role in the tme it takes to accept the celiacconditon. In additon, it became clear that the words used by the physician have diferent efectswhen frst heard by an adult with celiac disease and when frst heard by a mother of childrenwith celiac disease. These words, according to the authors' analyses, contribute to heightenemotons in patent support groups but defnitely hinder the acceptance process