Sharing life with a gluten‐intolerant person – the perspective of close relatives

Abstract

Several studies indicate the importance of social support in the case of chronic disease. The aim was to explore dilemmas experienced by close relatives living with a person suffering from coeliac disease, and to describe the strategies they used to deal with these dilemmas. Twenty-three informants were interviewed. A systematic inductive qualitative method, the critical incident technique was used. Disease-related worries included having bad conscience about not being affected by the disease, experiencing anxiety and witnessing the vulnerability of the affected relative in social situations. Dilemmas related to manage daily life were connected with increased domestic work, restricted freedom of action and the diseased person's preferential right of interpretation of health risks associated with the coeliac disease and deviations from the diet restrictions. Dilemmas related to disturbances in social life, concerned lack of information, knowledge and understanding. Different strategies were described to manage daily life. Close relatives experienced a variety of dilemmas that affected the situation of the whole family. The role of relatives in handling the coeliac disease with the diseased person in the everyday life might be underestimated, and to provide relatives with better knowledge regarding the disease might improve the situation also for patients.