‘I lose all these hours…’– exploring gender and consequences of dilemmas experienced in everyday life with coeliac disease

Annette Sverker, Gunnel Östlund, Claes Hallert, Gunnel Hensing

Few studies have focused on gendered consequences of coeliac disease (CD), despite the fact that women with coeliac disease report lower health-related quality of life than men do. The aim of this study was to explore consequences of dilemmas in everyday lives for women and men, as personally affected by CD or as close relatives to someone affected by the disease and to put these experiences into context regarding household activities. This QUAL-quan study included 28 men and 38 women. A mix method design was used. The critical incident technique that captures, in a structured way, the qualities of experiences was used in interviews to identify dilemmas and their consequences. To describe the social context of these dilemmas, a quantitative questionnaire was developed on food preparations and purchase, as well as on cooking and meal behaviours. The study was approved by the Research Ethics Committee of the Faculty of Health Sciences. The consequences were found in cognitive, social, emotional and physical aspects of human life. The overall pattern of these consequences was similar in women and men irrespective of being personally affected or a close relative. The main consequences identified were: daily concerns about gluten, constant preparation, being different, emotional pressure and body sensations because of CD. Descriptive data extracted from the questionnaire showed that women and men reported having a different social situation in relation to preparing food, making decisions about purchases, buying food products and preparing meals. The clinical implications of these findings are that healthcare professionals need to develop family-oriented information in relation to CD. It is necessary to inform the close relatives irrespective of sex of the possible consequences of the disease and to take in to account the different social context that women and men report in relation to food preparations.