Sharing life with a gluten-intolerant person--the perspective of close relatives.

BACKGROUND: Several studies indicate the importance of social support in the case of chronic disease. AIM: 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. METHODS: Twenty-three informants were interviewed. A systematic inductive qualitative method, the critical incident technique was used. RESULTS: 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. CONCLUSIONS: 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.

'Controlled by food'- lived experiences of coeliac disease.

AIM: The aim of this study was to explore the dilemmas experienced by women and men in their everyday lives in relation to their coeliac disease, and to explore the qualities of these dilemmas in relation to specific situations and living conditions. METHODS: We interviewed 43 informants, aged 20-40 years, using 'The Critical Incident Technique'. Interviews focused on situations that gave rise to confusion or discomfort in relation to disease. The interviews were transcribed verbatim and analysed qualitatively. RESULTS: We found 195 dilemmas, experienced in five arenas: food situation at work, during purchases, when travelling, in relation to meals at home and meals outside the home. Emotions, relationships and the management of daily life were the three main categories of dilemmas that emerged through the analysis. Specific emotions were experienced in relation to the disease, such as isolation, shame, fear of becoming contaminated by gluten and worries about being a bother. In the relationship with other persons the informants experienced a number of complicating dilemmas such as unwanted visibility, neglect, being forgotten, disclosure avoidance and risk taking. Dilemmas related to the management of daily life were restricted product choice, double work and constantly being on call. CONCLUSIONS: The lived experiences of coeliac disease were more varied and profound than expected. It is important to take psychological and social aspects into account in the treatment of patients with coeliac disease.